PAGENO="0001"
HOUSING NEEDS OF PERSONS WITH ACQUIRED
IMMUNE DEFICIENCY SYNDROME (AIDS)
HEARING
BEFORE THE
SUBCOMMITTEE ON
HOUSING AND COMMUNITY DEVELOPMENT
OF THE
COMMITTEE ON BANKING, FINANCE AND
TIRBAN AFFAIRS
HOUSE OF REPRESENTATIVES
ONE HUNDRED FIRST CONGRESS
SECOND SESSION
MARCH 21, 1990
Printed for the use of the Committee on Banking, Finance and Urban Affairs
Serial No. 101-99
U.S GOVERNMENT PRINTING OFFICE
27-986 WASHINGTON : 1990
For sale by the Superintendent of Documents, Congressional Sales Office
U.S. Government Printing Office, Washington, DC 20402
PAGENO="0002"
HOUSE COMMITI'EE ON BANKING, FINANCE AND URBAN AFFAIRS
FRANK ANNUNZIO, Illinois
WALTER E. FAUNTROY, District of
Columbia
STEPHEN L. NEAL, North Carolina
CARROLL HUBBARD, Jr., Kentucky
JOHN J. LAFALCE, New York
MARY ROSE OAKAR, Ohio
BRUCE F. VENTO, Minnesota
DOUG BARNARD, JR., Georgia
CHARLES E. SCHUMER, New York
BARNEY FRANK, Massachusetts
RICHARD H. LEHMAN, California
BRUCE A. MORRISON, Connecticut
MARCY KAPTUR, Ohio
BEN ERDREICH, Alabama
THOMAS R. CARPER, Delaware
ESTEBAN EDWARD TORRES, California
GERALD D. KLECZKA Wisconsin
BILL NELSON, Florida
PAUL E. KANJORSKI Pennsylvania
ELIZABETH J. PATTERSON, South Carolina
JOSEPH P. KENNEDY II, Massachusetts
FLOYD H. FLAKE, New York
KWEISI MFUME, Maryland
DAVID E. PRICE, North Carolina
NANCY PELOSI, California
JIM McDERMOTT, Washington
PETER HOAGLAND, Nebraska
RICHARD E. NEAL, Massachusetts
WALTER E. FAUNTROY, District of
Columbia
MARY ROSE OAKAR, Ohio
BRUCE F. VENTO, Minnesota
CHARLES E. SCHUMER, New York
BARNEY FRANK, Massachusetts
RICHARD H. LEHMAN, California
BRUCE A. MORRISON, Connecticut
MARCY KAPTUR, Ohio
BEN ERDREICH, Alabama
THOMAS R. CARPER, Delaware
ESTEBAN EDWARD TORRES, California
GERALD D. KLECZKA, Wisconsin
PAUL E. KANJORSKI, Pennsylvania
STEPHEN L. NEAL, North Carolina
CARROLL HUBBARD, JR., Kentucky
JOSEPH P. KENNEDY II, Massachusetts
FLOYD H. FLAKE, New York
KWEISI MFUME, Maryland
NANCY PELOSI, California
JOHN J. LAFALCE, New York
ELIZABETH J. PATTERSON, South Carolina
DAVID E. PRICE, North Carolina
JIM McDERMOTT, Washington
PETER HOAGLAND, Nebraska
RICHARD E. NEAL, Massachusetts
CHALMERS P. WYLIE, Ohio
JIM LEACH, Iowa
NORMAN D. SHUMWAY, California
STAN PARRIS, Virginia
BILL McCOLLUM, Florida
MARGE ROUKEMA, New Jersey
DOUG BEREUTER, Nebraska
DAVID DREIER, California
JOHN HILER, Indiana
THOMAS J. RIDGE, Pennsylvania
STEVE BARTLETT, Texas
TOBY ROTH, Wisconsin
ALFRED A. (AL) McCANDLESS, California
JIM SAXTON, New Jersey
PATRICIA F. SAJKJ, Hawaii
JIM BUNNING, Kentucky
RICHARD H. BAKER, Louisiana
CLIFF STEARNS, Florida
PAUL E. GILLMOR, Ohio
BILL PAXON, New York
MARGE ROUKEMA, New Jersey
CHALMERS P. WYLIE, Ohio
BILL McCOLLUM, Florida
DOUG BEREUTER, Nebraska
DAVID DREIER, California
JOHN HILER, Indiana
THOMAS J. RIDGE, Pennsylvania
STEVE BARTLETT, Texas
TOBY ROTH, Wisconsin
JIM SAXTON, New Jersey
PATRICIA F. SAIKI, Hawaii
JIM BUNNING, Kentucky
STAN PARRIS, Virginia
ALFRED A. (AL) McCANDLESS, California
RICHARD H. BAKER, Louisiana
BILL PAXON, New York
CLIFF STEARNS, Florida
PAUL E. GILLMOR, Ohio
HENRY B. GONZALEZ, Texas, Chairman
SUBCOMMITTEE ON HOUSING AND COMMUNITy DEVELOPMENT
HENRY B. GONZALEZ, Texas, Chairman
(II)
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CONTENTS
Page
Hearing held on:
March 21, 1990 . 1
Appendix:
March 21, 1990 80
WITNESSES
WEDNESDAY, MARCH 21, 1990
Anderson, Pam, program manager, Residential Services, AIDS Project of Los
Angeles
Bianchi, Barry, president, Board of Directors, Northwest Aids Foundation 40
Dannemeyer, Hon. William E., a Representative in Congress from the State of
California 6
Davis, Jim, representative, Housing Committee of AIDS Coalition to Unleash
Power, New York 72
Graham, Jim, administrator, Whitman-Walker Clinic, Washington, DC 37
Greenwald, Robet, manager, Public Policy-Legal and Housing Programs,
AIDS Action Committee, Boston 46
Jarrels, April, Birmingham, AL 10
McGuire, Jean, executive director, AIDS Action Council 77
Overrocker, John P., Washington, DC 9
Porter, Irving, New York City 12
Shubert, Virginia, AIDS Project Director, National Coalotion for the Home-
less 23
Sullivan, Patricia, director, Peter Claver Community, AIDS/ARC Services
Division, Catholic Charities, San Francisco, CA 30
Thomas, Harry, executive director, Seattle Housing Authority 50
Virgil, Reverend Richard, on behalf of Peter P. Smith, president, The Part-
nership for the Homeless, Inc., New York 67
Watkins, Barbara L., vice presient, Parkiand Memorial Hospital, Dallas, TX,
on behalf of the American, Hospital Association 70
Westerlund, Roland B., Housing Coordinator, Minnesota AIDS Project 56
Prepared statements:
Anderson, Pam 216
Bianchi, Barry, with enclosure 164
Dannemeyer, Hon. William E 126
Davis, Jim 313
Gonzalez, Hon. Henry B 81
Graham, Jim 158
Greenwald, Robert 195
Jarrels, April 134
McDermott, Hon. Jim 124
Overrocker, John P 129
Shubert, Virginia G 140
Sullivan, Patricia 148
Thomas, Harry 207
Virgil, Reverend Richard, on behalf of Peter P. Smith 294
Watkins, Barbara L 302
Westerlund, Roland B 227
Wylie, Hon. Chalmers P 465
(III)
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Iv
ADDITIONAL MATERIAL SUBMITTED FOR THE RECORD Page
American Hospital Association, statement 301
Deppe, Andrew D., director of public affairs, AIDS Foundation of Chicago,
letter dated April 4, 1990, to Hon. Henry B. Gonzalez 462
Greenwald, Robert, Federal Resources for AIDS and Project-Based Assistance. 511
Keating, Frank, memorandum for C. Austin Fitts, Assistant Secretary for
Housing-Federal Housing Commissioner and Gordon H. Mansfield, Assist-
ant Secretary-Designate for Fair Housing and Equal Opportunity, SX 322
Johnson, James A., executive director, Beyond Rejection Ministries, Inc.,
statement 459
McDermott, Hon. Jim, letter from David N. Dinkins dated March 20, 1990 326
National Coalition for the Homeless, report entitled "Fighting to Live: Home-
less People With AIDS, dated March 1990 329
Smith, Peter P., president of the Partnership for the Homeless, statement 294
Summary of H.R. 3423 123
Text of H.R. 3423 83
Watkins, Barbara L., 1989 Annual Report of Parkiand Hospital 466
Westerlund, Roland B.:
Article entitled "Renovation Soon Underway at ASD 262
Article "Minnesota Aids Project, Transitional Housing for Homeless
People with AIDS 235
Comparison sheet "Continuum of Housing for the Homeless" 233
Federal Home Loan Mortgage Corporation memorandum to Dennis D.
Downey from Christie L. Montgomery, regarding Revlon Apartments
Commentary, dated February 6, 1990 259
Magazine article from "Continuing Care," dated December 1989, entitled
"The Long Journey Called AIDS 255
Newspaper article from the St. Paul Pioneer Press Dispatch, dated
Sunday, June 21, 1987, entitled "AIDS in the Heartland" 265
Summary of Southwest Affordable Housing Projects 263
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HOUSING NEEDS OF PERSONS WITH ACQUIRED
IMMUNE DEFICIENCY SYNDROME (AIDS)
WEDNESDAY, MARCH 21, 1990
HOUSE OF REPRESENTATIVES,
SUBCOMMITTEE ON HOUSING AND COMMUNITY
DEVELOPMENT,
COMMITTEE ON BANKING, FINANCE AND URBAN AFFAIRS,
Washington, DC.
The subcommittee met, pursuant to notice, at 9:32 a.m., in room
2128, Rayburn House Office Building, Hon. Henry B. Gonzalez
[chairman] presiding.
Present: Chairman Gonzalez, Representatives Vento, Schumer,
Frank, Torres, Hubbard, Kennedy, Flake, Pelosi, McDermott,
Hoagland, Neal of Massachusetts, Wylie, McCandless, and Paxon.
Chairman GONZALEZ. The subcommittee* will please come to
order.
The hearing today will focus on the housing needs of persons
with Acquired Immune Deficiency Syndrome. This hearing marks
the first time a congressional subcommittee has specifically focused
on the housing needs of persons with AIDS. This effort is similar to
the first major congressional hearing we held in this subcommittee
on the plight of the homeless, in December 1982, which first
brought national attention to the issue of homelessness.
The purpose of this hearing is to focus on any legislative propos-
als to address the housing needs of persons with AIDS. I believe
that the testimony received by the subcommittee today will help us
to deal with the issue in our Comprehensive Housing and Commu-
nity Development Reauthorization bill.
Like our December 1982 hearing, the issue of the housing needs
of persons with AIDS should receive major national attention,
given the severity of the problem and the increasing number of
homeless persons with AIDS.
For instance, a recent survey conducted by the National Coali-
tion for the Homeless of 26 communities indicated that there are
identifiable populations of homeless persons with AIDS in all com-
munities surveyed. In New York City, approximately 20 to 30 per-
cent of the homeless are persons with AIDS. Additionally, of the ½
million infected with the HIV virus, which causes AIDS, the
number of persons with AIDS is estimated at over 120,000, and it is
expected this figure will increase.
Several members of the Housing Subcommittee have introduced
the AIDS Housing Opportunity Act, known as H.R. 3423, which au-
thorizes $290 million to provide housing options for persons living
(1)
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2
with AIDS and to prevent homelessness. The bill would provide
residential alternatives to costly hospital care and would enhance
the quality of life for persons living with AIDS.
Today, we have assembled a large number of witnesses from
around the country which represents a variety of views. The cen-
tral point that I believe each of our witnesses will make, however,
is that there is a substantial need for housing for persons with
AIDS.
It is clear that something must be done to deal with the housing
needs of persons with AIDS. H.R. 1180 contains provisions to define
persons with AIDS as eligible under the definition of handicapped
for the section 202 elderly and handicapped housing program. How-
ever, much more needs to be done.
We look forward to this testimony. I would like to recognize Mr.
McDermott and Ms. Pelosi who have been in the forefront of this
issue and are the authors of this legislation. So, unless there is
some objection, I'd like to recognize Mr. McDermott for any state-
ment he may wish to make at this point.
[The prepared statement of Mr. McDermott can be found in the
appendix.]
Mr. MCDERMOTT. Thank you, Mr. Chairman.
I am very pleased that you are willing to hold this hearing today
on the housing needs of people with AIDS. The tragedy of AIDS
has touched us all in one way or another, and it has presented a
special challenge for the people on our hometowns caring for those
suffering from this tragic epidemic.
All over the country, communities are confronting the lack of af-
fordable housing for people with AIDS and stretching their pre-
cious resources to being to address this problem. Seattle has been
in the forefront of this effort. In Seattle, we are slowly raising the
money to construct at 35-bed facility for those most in need of care.
There are currently over 1,200 people living with AIDS in the Se-
attle/King County area, and by 1992, this number will more than
double. This dramatic increase will strain the existing services.
More than 114,000 cases of AIDS have been diagnosed in the last
10 years. Today, 44,000 Americans are living and coping with this
very costly disease, which soon leaves many impoverished. Some of
these people have family and friends to take them in, but many do
not.
These people are faced with essential two choices-to live in a
hospital bed or to live on the streets. We are here today to discuss
these choices and, hopefully, to expand the choices of options which
will be available to homeless people with AIDS.
Providing housing assistance is not only more humane, it is more
cost effective. It does not make any sense whatsoever to me to
spend $650 in Seattle per day to keep a person with AIDS confined
to a hospital bed, when we could be spending as little as $50 a day
to provide them with housing and let them live independently.
These, at the moment, are our only two options.
Last fall, my colleagues, Ms. Pelosi, Mr. Schumer, and I intro-
duced legislation to expand housing options for people with AIDS.
Our proposal provides short-term assistance to prevent homeless-
ness and earmarks new section 8 certificates to help persons with
AIDS stay in their own homes. It also expands the McKinney SRO
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3
program and helps localities build community residences like the
one in Seattle.
I specifically want to commend you, Mr~Chairman, for bringing
in people from all over the country who. confront this issue every
single day-people with AIDS who understand what it means to
fear life on the streets, representatives of the medical community
who are forced to keep homeless people with AIDS in hospital beds
when they are strong enough to live on their own, and service pro-
viders who see~ this problem~escalating, forcing them all to try and
find shelter for at least 30,000 homeless people with AIDS and
their dependents.
This estimate of 30,000 homeless people is bound to grow, be-
cause the disease is. gaining rapidly. Up until 1987, 50,000 total
AIDS cases were reported, but in the last 18 months, another
50,000 people have come down with the active disease, and we are
expecting another 50,000 to be reported this year alone. Our hospi-
tals cannot support that *burden; our homeless shelters cannot,
either.
Conservative estimates put the amount of people infected with
HIV at more than 1 million. The CDC in Atlanta tells us that at
least another 179,000 of these people will develop full-blown AIDS
before the end of 1992, and the number of new cases will continue
to rise annually after that.
All of these statistics mean one thing. This problem is big, and it
is going to get much, much bigger.
Mr. Chairman, the issue of providing housing for people with
AIDS is a new one for the Congress, but let me emphasize that
urgent action is needed. Persons living with AIDS cannot wait for
new housing to be built or subsidized housing to become available.
The need the help now.
I look forward to hearing from the witnesses today.
Thank you.
Chairman GONZALEZ. Thank you, Mr. McDermott.
We will recognize the coauthor of the legislation, Ms. Pelosi, if
you have any statement to make.
Ms. PELOSI. Thank you very much, Mr. Chairman, for the oppor-
tunity to make an opening statement but, most of all, for calling
the attention of Congress to this ever-growing important issue
facing our country. I commend you for doing that, and I commend
our colleague doctor, Representative McDermott, for taking the
leadership on this legislation and working with me and with our
colleague, Chuck Schumer of New York, and allowing us to partici-
pate in introducing it into Congress.
Our colleague, Mr. McDermott, mentioned some of the signifi-
cant points that need to be recognized, to point out the need for
this legislation. So, I will just mention and emphasize that he used
a figure of 30,000 people with AIDS and their dependents-a stag-
gering number, I believe. He mentioned the witnesses who are here
today, and for this, I am very grateful to you, Mr. Chairman, for
allowing us to have their statements be placed on the record and
have the benefit of their wisdom on this subject.
This is an important issue for all the reasons that you mentioned
in your statement and Mr. McDermott mentioned in his.
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4
There is another point I would like to make, in addition to associ-
ating myself with your remarks, and that is that the nature of
AIDS, I believe, is changing. Hopefully, with research and with
new drugs that may be available, people with AIDS or those infect-
ed with HIV will continue to live longer, and this is the good news.
When we first started on the AIDS issue in Congress, it was a
death sentence. It was a very gloomy predicament. It still is that,
but there is that ray of hope, that if early intervention can prevent
people with the HIV infection to stave off what my colleague calls
a "full-blown" case of AIDS, it is our hope, of course, and prayer
that a cure will come along in time to save many of these lives.
So, what we are doing is preparing for life and preparing for the
most productive kind of lives for these people, and in doing that,
we must meet the most fundamental need of shelter and adequate
medical care for them and a situation that has a casework ap-
proach.
I am very proud that in San Francisco-and we will be hearing
more about it later-we have a couple of projects which do this-
the Peter Claver House, providing housing for $40 a day, versus the
staggering $850 and on up in a hospital, and the Shanty Project,
which provides housing at $30 a day for people with HIV or AIDS.
So, we know that it can be done better, we know it can be done
more cheaply, but most of all, we know it can be done more sensi-
tively to the needs of people with AIDS, so they can continue a pro-
ductive life, so that we can remove from their lives, hopefully,
some menace of being sick and being concerned and scared about
where they will live as they fight this fight.
So, therefore, I thank you again, Mr. Chairman, for holding this
hearing, commend our colleague, Mr. McDermott, for his leader-
ship, and Mr. Schumer and I are proud to join you in this initia-
tive.
Thank you.
Chairman GONZALEZ. Thank you, Ms. Pelosi.
Mr. Paxon, do you have a statement?
Mr. PAXON. No. Thank you, Mr. Chairman.
Chairman GONZALEZ. Thank you.
Mr. McCandless.
Mr. MCCANDLESS. No. Thank you, Mr. Chairman.
Chairman GONZALEZ. Certainly. Without objection, so ordered.
[The prepared statement of Mr. Green can be found in the ap-
pendix.]
Chairman GONZALEZ. Thank you, Mr. McCandless.
Mr. Schumer, a preeminent member of this committee and sub-
committee from the beginning, is here, and we recognize you, Mr.
Schumer.
Mr. SCHUMER. Thank you, Mr. Chairman, and first, let me thank
you for having this hearing. It is really a first, and under your
leadership, the committee is having it, because this is really the
first hearing in the Congress, as best I know, on AIDS housing.
Your continuing leadership in the housing area, as we go through
these extensive hearings, leading to the markup of H.R. 1180,
which, hopefully, will set new directions in housing policy. These
are directions that probably have not been thought about before
and directions that are definitely needed.
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5
Today's issue, of course, Mr. Chairman, is an unfortunate combi-
nation of two of the greatest tragedies in modern life-AIDS and
homelessness. People with AIDS face enormous daily challenges
that require vast amounts of energy, time, and above all, courage.
We all know that estimates of numbers of PWAs or those inflict-
ed with the HIV virus have skyrocketed into the millions. The as-
tronomical costs of medical care means severe financial hardship
for PWAs, and one of the most horrible results is that PWAs often
find it hard or impossible to find or keep affordable housing. The
spectre of someone being forced to live on the streets because they
must battle AIDS with every penny they have is simply unaccept-
able, unjust, and inhumane in 20th century America, and yet, that
is what is happening across this country.
Peter Smith of the Partnership for the Homeless, from my home-
town of New York City, will testify later in this hearing that home-
less PWAs are the fastest-growing segment of the homeless popula-
tion in New York City and possibly in the country. In New York
City, we estimate that there are between 8,000 and 11,000 homeless
PWAs. This number is expected to grow to 30,000 by 1993. Smith
also estimates that there are 28,000 to 32,000 homeless PWAs na-
tionally, with an additional 10,000 to 11,000 children and other de-
pendents who are also homeless. It just a terribly sad picture, and
now is the time for Federal action if there ever has been.
H.R. 3423, the AIDS Housing Opportunity Act, was introduced by
Jim McDermott of Seattle, Washington, and I want to thank him
for his leadership and courage on this issue; by Nancy Pelosi, one
of the most dynamic newer Members of the Congress; and by
myself. I feel it is an excellent step. In short, H.R. 3423 provides
$290 million a year for AIDS housing.
I think that both my colleagues have gone over the substance of
the bill but I would also just say that it is cost effective, as well,
aside from being humane, which is its main goal. This is one of the
rare instances where you can be humane and save money. Current-
ly, a homeless person with AIDS has only two choices: life on the
street or in a hospital bed, and neither is really conducive to their
incapacitated condition. It costs $750 to $800 a day to care for
PWAs in the hospital; only $350 in a nursing-care facility. Yet, it
costs only $60 a day for the section 8 certificate and an additional
$130 a day for care in community residences funded by the bill. So,
the savings are enormous.
I would just hope that my colleagues understand the great need
out there and the solution that is presented in this bill, and once
again, I want to thank you, Mr. Chairman, for this opportunity.
Chairman GONZALEZ. Thank you, Mr. Schumer.
The hour is running a little late. However, Mr. Kennedy, a
member of the subcommittee is here, and we will ask if he has a
statement, maybe 1 or 2 minutes' worth.
Mr. Kennedy.
Mr. KENNEDY. Do not worry, Mr. Chairman. I will not get too
cranked up this morning.
I would just like to congratulate Mr. Schumer, Mr. McDermott,
and Ms. Pelosi on what I think is an important step forward here
for the Congress of the United States to deal with the problem of
housing for victims of AIDS. The fact is that this Congress has
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6
been extremely slow in recognizing the tremendous importance of
taking care of AIDS victims in this country, and I think that this
effort is not only important because of the sensitivity involved, but
it is also important for budgetary purposes, in terms of saving the
country a tremendous amount of money versus alternative care.
The fact is that right now, I suppose, the argument can be made
that we are not saving money because we are not taking care of
AIDS patients, which is the reality that so many people are all too
well aware of, but I do want to say how proud I am to support the
bill that we are here today to hear our witnesses testify on, how
important I think that it is that we continue to carry the enthusi-
asm for this bill forward onto the House floor.
Obviously, whenever we talk about AIDS, we also make many
enemies in this country, and we have got to have a sensitive Con-
gress and a Congress that knows and understands how to deal with
these problems.
So, I am delighted to support the bill, Mr. Chairman. I thank you
for the time, and I think that this will be an important hearing to
have this morning.
Thank you.
Chairman GONZALEZ. Thank you, Mr. Kennedy.
Our colleague from California, Mr. Dannemeyer-we call him
Bill Dannemeyer, about 2 days inquired as to the possibility of tes-
tifying. Of course, as far as this committee goes, we give precedent
to a Member, and so, we recognize you at this point, Mr. Danne-
meyer and thank you for your interest, and you may proceed as
you deem best.
We want to thank you for the statement you submitted in writ-
ing, and we recognize you at this point.
STATEMENT OF HON. WILLIAM E. DANNEMEYER,
REPRESENTATIVE FROM THE 39TH DISTRICT OF CALIFORNIA
Mr. DANNEMEYER. Thank you, Mr. Chairman and Members. My
statement has been submitted and will be placed in the record. I
have some comments I'd like to share with you. I'm a member of
the Health and Environment Subcommittee here in the House.
This subcommittee has dealt with the issue of what response the
Federal Government should muster in dealing with the AIDS epi-
demic. Tragically, in my opinion, we have a long ways to go in
treating the issue as a public health issue.
Currently, the Federal Government and most of the States in the
Union with the largest number of cases are continuing to treat it
as a civil rights issue and not a public health issue. What do I
mean by that statement?
The cornerstone of our society's ability to deal with any commu-
nicable disease, particularly venereal disease, curable or noncura-
ble is the concept of reportability for the carriers in confidence to
public health and contact tracing. The American Medical Associa-
tion, to its credit, last December in Hawaii finally came around to
recognizing this important step that needs to be taken in dealing
with the AIDS epidemic. It endorsed a resolution at its convention
in Hawaii that every State in the Union should have in place a law
for mandatory reportability for HIV carriers in confidence to
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7
public health in order to facilitate programs to notify the sexua-
land needle sharing partners of infected persons that they may
have been exposed to a fatal virus.
Sadly today, as we face this epidemic, 11 States in this Union
with 78 percent of the cases, do not have that law in place-New
York, withthe largest number of cases, about 23 percent, my State
of California with about 20 percent of the cases, just to name a few.
So, I'm suggesting that if this committee in its wisdom decides to
produce some legislation dealing with this need, one of the condi-
tions should be that any State or any private organization in a
State that applies for and receives any money should have as a re-
quirement, in its public health system, mandatory reportability for
HIV carriers and contact tracing.
I have long supported the idea of hospice care to deal with AIDS
patients. I support that, and I hope that in your consideration, you
will give thought to a gentleman that I've met in this field, Jim
Johnson of Long Beach CA, who has been a pioneer in hospice care
for AIDS patients. Rejection Ministries is the name of his organiza-
tion.
He has done, I thifik, an excellent job of providing and operating
a hospice. He has certain rules in the operation of a hospice and I
would submit them for this committee for its consideration. The
rules are very simple: no illicit drugs, no sex, whether homosexual
or heterosexual on the part of the patients in the hospice. It's very
simple, but effective for people in the midst of this tragedy.
I think also, the idea of-the quantity of money that's men-
tioned, how do you deal with that? The fact is that currently this
Nation is expending about $1.2 billion in dealing with the epidem-
ic. About $800 million of that is hopefully to find a cure for this
tragedy and about $400 million for education. Indeed, the quantity
of money that the Federal Government is expending to deal with
the AIDS epidemic has reached a level that some voices in Con-
gress are beginning to say, hey, wait a minute.
We lose far more people from heart disease and cancer, but the
quantity of money we're spending at the Federal level to deal with
those problems is far less than we're spending on AIDS. Serious
concerns have been raised around here as to whether or not we
have our priorities in order.
I've read the legislation. There's an uncertainty in my mind as to
what happens to local zoning laws when we establish hospices. I
would hope that any legislation that is produced by the committee
would make clear that the establishment of a hospice must be con-
sistent with and respectful of local zoning laws.
I don't think we want Federal legislation~ that's going to result in
a claim that because the Federal Government has entered this pro-
gram of housing that it supercedes the function of local zoning laws
with respect to the establishing of hospices. Then I think also-con-
sidering the fact that this Nation is adding this fiscal year, some
$240 billion to its national debt, it is my feeling that any of us in
this business today who come forward with a new program on top
of the existing spending stream must of necessity identify a part of
the budget that, in their judgment, is of less importance. In this
instance, if this new spending program is going to expend a quarter
of a billion dollars for a need that I admit is there, then I think the
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8
proponents have the duty to identify offsetting spending cuts, so
that the overall impact on the budget is neutral.
The era where we can just add to the existing spending stream is
over. We just can't continue to add money to programs without rec-
ognizing this necessity.
Finally, let me observe that I have a friend of mine, Jim John-
son, who I said operates the Rejection Ministry, and Mr. Chairman,
I'd like to ask permission-I was hopeful that he could be here to
share with you his thoughts on running this hospice ministry in
Long Beach. With the short notice that my office received of this
hearing, that was not possible, but he's going to produce a state-
ment and I'd like to ask permission to put that statement in the
record so it will be a part of the record.
Chairman GONZALEZ. Certainly, without objection, it's so ordered.
[Statement of Jim Johnson can be found in the appendix.]
Mr. DANNEMEYER. I thank you very much~for this chance to visit.
[The prepared statement of the Honorable William E. Danne-
meyer can be found in the appendix.]
Chairman GONZALEZ. Thank you, Congressman. I don't have any
particular questions to ask you at this point. I think the recommen-
dations you're making are those that we're confronting through re-
lated legislation. Particularly since Gramm-Rudman, however, we
first have to work on what we have before us.
Mr. McCandless, do you have any questions of the Congressman?
Mr. MCCANDLESS. No, Mr. Chairman.
Chairman GONZALEZ. Mr. McDermott.
Mr. MCDERMOTT. No, thank you, Mr. Chairman.
Chairman GONZALEZ. Ms. Pelosi.
Ms. PEL0sI. No, Mr. Chairman.
Chairman GONZALEZ. Mr. Schumer.
Mr. SCHUMER. Mr. Chairman, my only thought which I'd share
with my colleague-and I appreciate his understanding of the des-
perate circumstances people are in-is in terms of funding. As the
gentleman well knows, many of the people with AIDS now who are
in these situations are in hospitals where the average cost is $750
to $800 a day. Now, if those people are Medicaid recipients, the cost
is split between the Federal and half that cost State Governments.
This proposal not only provides a more humane and appropriate
setting, but also ends up reducing the costs to the Federal Govern-
ment as opposed to increasing it.
Now, admittedly, in the crazy ways we work here, it would
reduce the health budget and increase the housing budget, but
nonetheless, it does speak for itself in terms of where the money
would come from for this kind of situation.
Mr. DANNEMEYER. Well, I thank the gentleman for his observa-
tion, but I think we've each been here long enough to know that
for some reason, when the proponents of a new Federal program
claim that it will result in an overall savings to the Government,
we find, when we go back a year or two or three later, that the
reduction didn't take place, but an increase did.
Experience has taught me that and I think if we look at the Fed-
eral budget process, it teaches us all that. I'm just saying that as a
matter of principle. This is something that I've urged-I'm not
privileged to serve on your committee, but in my work on the
PAGENO="0013"
9
Energy and Commerce Committee, any time a proponent of a new
program comes along, I share with them the necessity that I've
shared with you now.
We're in an era where we have to find ways to reduce existing
programs if we want to establish new programs. Thank you.
Chairman GONZALEZ. Thank you very much. We appreciate your
interest and the time you've taken, Congressman.
The first panel we have this morning consists of Mr. John Over-
rocker from Washington, DC, Ms. April Jarrels from Birmingham,
AL, and Mr. Irving Porter from New York City. If it's OK with the
panel, why don't we recognize you in the order that I introduced
you and we'll start with Mr. Overrocker.
STATEMENT OF JOHN P. OVERROCKER, WASHINGTON, DC.
Mr. OVERROCKER. Mr. Chairman and members of the committee,
my name is John Page Overrocker and I'm here to tell you what it
was like to be homeless and to be suffering with HIV infection. We
always believe that the worst can never happen to you. Back in De-
cember 1987, I found myself in the very worst possible of situa-
tions.
I was homeless, without friends, in a city that I did not know. I
had been brought here through legal matters which have been
since resolved. I was suffering from HIV infection. I went to Trav-
elers Aid and I went to churches for help and no one would help
me.
Finally, out of desperation, I begged money for a phone call to
the gay hotline to find out what kind of help I could get. They in-
formed there was ~a place in Washington called the Whitman
Walker Clinic that helped people in .my condition. I begged money
for another phone call, only to find out that the clinic was closed
until the holidays were over. This was in December.
Somehow I waited that week and called them again. Things
began to get better immediately. They helped me with my legal
problems and they found me a place to stay for a time in a shelter.
Even in the shelter, I had to be out by 6:00 in the morning, and
you were not allowed back in until 6:00 at night, so for 12 hours, I
was on the streets with noting.
It took almost 2 months to get everything straightened around
and before I could be put into a house. Finally, that happened.
Through the housing services of the Whitman Walker Clinic, I
have benefited a great deal. Food banks were made available to
me. Dental service was made available to me. Medical services
were made available to me. Counselling on HIV infection and
AIDS were - made available to me, all of which cost was borne by
the Whitman Walker Clinic.
I :would have to say right now. that I am one of the lucky ones,
because I'm no longer on the street. Had it not been for the Whit-
man Walker Clinic, I think it's very safe to say that I would not be
sitting here right now. I would be probably dead.
The Schwartz Housing Program at the Whitman Walker Clinic
can handle up to 45 people. At times, there are waiting lists of over
100. As soon as a room is vacated in one of the houses, it's immedi-
PAGENO="0014"
10
ately filled up again. I've been through this process five times with
different roommates who all since passed away.
Thanks to the Clinic and their housing services, I enjoy reason-
ably good health, although I have had my setbacks. The Clinic
treats well over a thousand people with AIDS. The food bank han-
dles over 300. The dental services handle over 150. All of these
people at one point have been in the same situation or could be in
the same situation that I am in.
You think it can never happen to you, but it can. I was a citizen
in a Midwestern town. I was working; I was employed; I had a job.
I had my own apartment and I had everything I needed until this
happened. Without warning, it just happened.
I never had been on the streets before and didn't know the first
thing about it. I lived in a bus station here in Washington, D.C. for
a week and a half because it was the only place in Washington
that was open 24 hours a day. However, you're not allowed to sleep
in that bus station because the police will ask you to leave.
I have since made a lot of friends at the clinic. I have a buddy
who is there for me when I need him to give me moral support and
to help me through difficult times. He doesn't get paid for that. He
just doesn't want to see this happen to anyone else.
Recently, about a year ago, a book was released and it's entitled
Epitaphs for the Living, a Photographic Essay of People with AIDS.
I would like to include in my closing remarks, a quote from the
book. Simply it says, "You've got to let go of the past, hold on
dearly to the present and never be afraid to dream of a future."
That young man is me. Thank you, Mr. Chairman.
[The prepared statement of John Overrocker can be found in the.
appendix.]
Chairman GONZALEZ. Thank you very much, Mr. Overrocker. Ms.
Jarrels?
STATEMENT OF APRIL JARRELS, BIRMINGHAM, AL.
Ms. JARRELS. Good morning, Mr. Chairman and committee. I live
in Birmingham. I am currently homeless and I am infected with
HIV. I don't know how I got this virus. I never shot drugs; my
mind is too rich for that. I am here today because even. though I
am homeless, I don't want to be treated like a dog on the street.
I am 27 years old and until a month ago, I lived with my family
and I made my living as a cook in a convenience store. I also at-
tended Southern Junior College where I was studying to be a nurs-
ing assistant. Today, I have no job. I had to drop out of school and
for the next week or so, I have a bed at the Pickens Respite Center,
a temporary care facility for homeless peopl~e with AIDS.
Actually, I grew up in New Jersey. Four years ago, I got a call
from my daddy who told me my grandmother was very sick. He
asked me to come down South to take care of her. I packed my
bags and moved to Birmingham. I took care of my grandmother
about 6 months.
After my grandmother passed, I decided to stay in Birmingham,
so I got a job as a cook and settled in with my family. In July 1988,
I noticed my oldest brother Willie had started getting sick. I no-
ticed his eyes were yellow and he started losing weight for no
PAGENO="0015"
11
reason until his eyes looked like they were shrunk in back of his
head.
We. thought he must have had hepatitis or yellow jaundice. He
started going to the clinic, but when he came home, he would
never tell us what was wrong. Instead, he would just say things
like, the doctor ain't telling me nothing.
Finally, one ~day last June, me and my daddy decided to go with
my brother to the clinic; When we got there, I started being nosey
and went to the ~examining room where his medical chart was
hanging on the door. I read it, and it read that he had AIDS. When
I told my father, he started crying. When the doctor came, think-
ing we already knew about Willie's condition, he told us Willie
would have to go into the hospital because he had a seizure and he
also had tuberculosis and pneumonia.
Willie stayed in the hospital for about 2½ months. My uncle
went and brought him home. In the hospital he had a stroke and
his right side was paralyzed all the way down. I asked him why he
never told us he had AIDS.
He said he was afraid we would turn our backs on him and have
nothing to do with him. I told him, no, we wouldn't turn our backs
on him. We're here for you and we'll always be here for you. Willie
couldn't take his medicine anymore by himself. He had a catheter
in his chest. The nurse showed us how to insert a needle in the
catheter, but everybody was too nervous to do it right. So I used to
give him his injections and take care of him. Later, the fluid on his
brain got worse and he turned mean. I used to fuss back at him,
but he didn't mean any harm, he was just in so much pain.
A visiting nurse told a family of another man who had AIDS
how good I was taking care of my brother, so they hired me to sit
with their son. He was a famous musician from New York. We
used to sit and talk and sometimes he would sit up and play the
piano. One night I was passing by his house and I saw an ambu-
lance outside. I called his parents and his mother told me he had
passed on.
After that, I decided I would go into nursing assistant's training,
so I enrolled in college. My brother was doing fine for a while, but
then he got worse. He didn't want to take his medicine anymore
because he said the medicine was making him sicker. His head was
always hurting and he lost his appetite.
I got tired to the point where I couldn't take any more. I gave
him his medication when it was needed, but I gave up fussing with
him. Finally, on March 6th of this year, he passed.
On February 19, 1 was admitted to the hospital with pains in my
left side. The doctor told me that my kidneys and bladder were in-
fected. They asked me to sign a paper for a spinal tap. Later they
told me that I had also signed to take an AIDS test. On March 6th,
I got a spinal tap. That afternoon, three men and a woman came
into my room. They told me my kidneys were doing fine, but that
my other test results had come back positive.
I thought they were going to tell me I was pregnant, but then
the doctor told me that being positive means that I had AIDS.
Later that same afternoon, I called my daddy to tell him to come to
the hospital so I could tell him to his face.
PAGENO="0016"
12
When I got him on the phone, he was crying. I asked him what
was wrong. He told me Willie had passed. Imagine how I felt in
getting both sets of bad news in 1 day? The day of my brother's
funeral, my aunt told me, you're always welcome here. She didn't
have to say what she meant. I'm always welcome to visit, but be-
cause I had the virus, I wasn't welcome to live there anymore.
It isn't that she doesn't love me. She just couldn't take it any-
more. Besides, if I went home, I'd have to eat off a paper plate or
drink out of a styrofoam cup like my brother did, and they would
worry about the kids. There are three little children. I understand
it.
I know I can't give my cousins the virus by eating with them or
playing with them, but my family doesn't trust what someone else
says. Not about the word AIDS. I couldn't go to my brother's funer-
al, so I never got a chance to tell him goodbye. I never shed a tear
for him, but sometimes when I'm by myself, I cry, because I don't
want to be treated like trash by my family.
I don't want them to have to stand 20 feet away from me to talk
to me. I told the hospital social worker that I couldn't go home. She
told me she would find me a place to go.
On March 9, I was taken to Pickens Respite Care Center. It has
six beds and is the only place in Birmingham for homeless people
with HIV infection. You can only stay there until you get on your
feet, and then you have to get a job and find your own place.
There is no permanent housing that I know of in Alabama for
people with AIDS or HIV infection, except maybe a Salvation
Army where they turn ~people out at 6:00 in the morning. Tell me
how I'm supposed to get a job when people find out I have the
virus?
I applied for disability, but I don't know if it will pay for an
apartment. I just want a place where I can stay on my own without
having to worry about what other people are thinking. One of my
cousins pays for my medicine right now, and if I had a place to
live, my boyfriend would take care of me. I don't know how I'm
going to make it happen, but I have the faith that it will.
I'm hoping and praying that someone will make the same thing
happen for other homeless people with HIV infection.
[The prepared statement of April Jarrels can be found in the ap-
pendix.]
Chairman GONZALEZ. Thank you, Ms. Jarrels. Mr. Porter.
STATEMENT OF IRVING PORTER, NEW YORK CITY, NY
Mr. PORTER. Good morning, Mr. Chairman, Members. I have a lot
written down here, but coming in this room, my mind went back.
Monday was my birthday. I was 40 years old. I came through the
1950s and the 1960s as a child, and one of my role models were the
Kennedys. I always wanted to meet one. It's a shame it took AIDS
for me to sit across from Mr. Kennedy. But I remember how I used
to hear a minister say that you have to make the best out of every
situation. No matter what it is, there is good in it.
Also, I could have come to live in Washington. I have a niece in
Howard University. She wants to be a doctor. I have a brother and
sister in Richmond, Virginia. My sister is a teacher, and my broth-
PAGENO="0017"
13
er has his own business. Somehow, in my life, I became homeless,
and that's what I'm here to talk about: homelessness and AIDS.
I will start out by saying I was born in New Jersey. I have been
a resident of New York City since 1968. I am homeless and I have
AIDS. I am giving this testimony in hope that telling my personal
story will help release some of the anger that continues to grow
inside of me as my eyes are opened to the system that the Govern-
ment uses to renege on its obligation to provide services to persons
who are homeless, and, even more, to homeless persons who are
living with AIDS or HIV.
Approximately 12 years ago, my life began to fall out of control. I
found myself addicted to cocaine and alcohol. My girlfriend took
my newborn daughter and moved to Detroit. I was devastated. Be-
cause we were not married, there was nothing I could do. I didn't
even have visitation rights. So I went many years without seeing
my daughter.
Finally, in 1985, I decided to do something about my drug prob-
lem. I knew I needed residential treatment if I was going to kick
my addiction. But all of the drug treatment slots were full.
In October of that year, I learned that a few designated treat-
ment slots were available for people who were homeless. I know it
sounds crazy, but the only way I could get into treatment to get the
treatment that I needed was to become homeless myself.
So, I gave up my job as a bookkeeper, I gave up my apartment as
well, and I entered the New York City shelter system. Little did I
know I was only compounding my problems. I was entering a
system that was easy to get into, but almost impossible to get out
of.
I remember clearly the first time I entered the Third Street Shel-
ter in New York City. My insides turned. Even though I desperate-
ly wanted to help myself to get off drugs, something inside of me
was telling me I was making a mistake.
The shelter had an odor of its own that was unbearable. Home-
less men were walking around smelling as if they had not
showered or changed their clothes in months. There were only a
few seats, and there was a line for everything, including a line to
take a shit. At the time, I could not figure out for the life of me
how a man could accept this way of life. Little did I know that my
time was coming around. All I wanted at the time was to be inter-
viewed and placed in a drug program. The sooner I got the hell out
of the shelter, the happier I would be.
After a few days, I was sent to Day Top Village. Day Top is one
of the oldest drug treatment programs in the country and consid-
ered one of the best. The mansion we lived in and the grounds at
Swan Lake, New York, were absolutely gorgeous. They were so
clean, you could eat off the ground. But this did not change the
fact that you were around men and women from every walk of life
possible. There were four men to a room, and at least once a
month, we had room changes. As a result, roommates changed con-
stantly.
While I was in drug treatment, I revealed that I was bisexual.
They then tested me for HIV without my knowledge. I was told by
the nurse that my immune system was shot, but I never was told
that 1 was HIV positive.
PAGENO="0018"
14
I started picking up various infections, including shingles, fungal
feet. I also had a mild stroke. Increasingly, I found myself too fa-
tigued to keep up with the pace of the program. After 21 months, I
found out I had another year and a half before I would graduate. I
decided to leave the program.
When I returned after about 10 days on the street to pick up my
belongings, I was informed that my personal possessions were gone.
I did not even have a change of clothing.
At this time, apartment rents were skyrocketing. Day Top was
receiving my welfare benefit. It took 2 months for Human Re-
sourdes Administration to turn my benefits over to me. During that
period, I wound up in Green Points Men's Shelter in Brooklyn, NY.
As time moved on, I started losing weight. I became very weak. I
would lose my breath from just walking. I went to Beth Israel Hos-
pital and was diagnosed as having pneumonia. I was given antibiot-
ics, but I continued to have high fevers over 100 degrees.
After a few days, I guess when the stipulated time for my Medic-
aid was running out, I was informed by the doctor that I was going
to be released from the hospital. I asked him how could they re-
lease me when I was still having these high fevers. He told me my
temperatures were normal. I always asked the nurse when she fin-
ished taking my temperature what it was. At this point, I knew the
hospital was trying to give me the shaft.
I signed myself out of. that hospital and immediately went to
downtown Beekman Hospital, where I was diagnosed as having
active tuberculosis. I was advised by my doctor to be tested for
AIDS. I was tested, and the results were positive. That was during
November, 1988. When I was given the news, I just wanted to die. I
was put into isolation, and I was treated for TB.
When the hospital decided to discharge me, they informed me
that a special TB unit was being opened at Bellevue Men's Shelter.
After the usual bureaucratic runaround, I was accepted into this
so-called special unit. I was the second resident. Thank God, I ma-
nipulated my worker into giving me a private room. I was part of
the unit's grand opening.
The director, Mr. Lucas, told us this was going to be a shelter
haven, and that people would be purposefully trying to become in-
fected by TB in order to get a bed there.
The good treatment lasted long enough to impress certain offi-
cials and to obtain positive coverage from the news media. Then,
day by day, the standard of services declined, and it just became
just like any other shelter.
They could not keep a doctor for a 2-month period. Medications
were not being monitored properly. Clients were either dying, de-
veloping HIV illnesses, or their TB was becoming reactivated.
In order to boost the success rate, the shelter began to find rea-
sons to discharge older clients like me. Once again, I found myself
living in the street. Thank God for the Coalition of the Homeless. I
have been diagnosed for 6 months, but until I went there, I knew
nothing about my rights as a person who had HIV.
During the month of March, I became ill once again. This time,
it was pneumococci pneumonia. I collapsed while standing in line
for a meal. I was taken to New York Hospital. I immediately told
PAGENO="0019"
15
them I was HIV positive, and they asked me to become a part of
their special studies clinic for people with AIDS.
The social worker, Susan Miller, and the doctors and nurses
there finally treated me as if I was a human being. They directed
me to the Medical Assistance Program, a special division of New
York City's Human Resource Administration, and demanded that
they give me immediate housing. The City put me in a welfare
hotel.
My hotel room is certainly better than a shelter or being on the
street, but it's still not proper living situation for a person with
AIDS. I have been in the same room for almost a year. I am still
waiting for proper housing.
I presently have to share my bathroom with about 20 people. I
have to be very careful not to pick up any infections. Also, there
are drugs throughout the hotel, so I have to deal with a lot of
temptation.
Today, I want to live, not die. Being HIV positive, to use drugs
would be quick suicide. So many in the AIDS community have
become victims of crack because they have no other way to ease
the pain or to change circumstances they are forced to live with.
Crack can break down a healthy man in 6 months. I have seen it
kill persons with AIDS in two. Why house a person with AIDS who
has problems with drugs in an environment where drugs are plen-
tiful? Why house a person with AIDS around all kinds of illnesses
are in unsanitary conditions? I'll tell you why. Because if the envi-
ronment kills one homeless person with AIDS a day, that's one less
person that the system has to deal with.
Why doesn't the Government do something ta help homeless
people before they contact HIV? I tell you why. Because every
homeless person that becomes HIV positive, that's one less home-
less person the system will have to deal with in 2 years' time.
If you just take a look at the statistics on homeless people who
are now HIV infected, you will see my experience as a homeless
black male has been and will be the now trend of AIDS.
In New York City alone, there are more than 10,000 homeless
persons with AIDS or HIV illnesses. Thousands more are infected;
they've never been tested. Over 70 percent of us are black; 20 per-
cent are Latino. These numbers didn't happen overnight, and if the
Government didn't know what was going on, it's only because they
did not want to know. Even now, the city, State, and Federal Gov-
ernments would like to pretend we don't exist.
When I first gave up my home to enter the shelter system, I
didn't realize I had gotten on a merry-go-round that I couldn't stop.
The people I saw trying to get into drug treatments back then are
the same ones I later saw in the shelter system. The ones I saw
who finally got drug treatment are the same people I see today in
the hospitals and infectious disease clinics.
When I die, my death certificate will probably say I died from
AIDS. But I want the world to know the real cause: A Government
that saw AIDS, left it unchecked as a solution for dealing with
people like me.
You think AIDS will stop with us, but HIV doesn't see skin color;
it can't tell a person's sexual orientation. Because you didn't care,
AIDS will continue to spread. It might even touch you. If it does, I
PAGENO="0020"
16
hope you are treated with less contempt than I was shown for
homeless people like me.
Mr. GONZALEZ. Thank you, Mr. Porter. I believe that your state-
ments don't need any kind of questions. I mean, they're elegant,
they're beyond any power of ordinary words or ordinary individ-
uals who haven't faced any kind of situation such as what you
have described. The reason we are here today is because there are
quite a number of officials in the Congress, out of the Congress, in
the private sector, and on the State level and on the municipal
level that uphold what I recall as indifference to the needs of a citi-
zen. When I was in school and Franklin Roosevelt was the Presi-
dent when he made his very very dramatic statement that presi-
dents could err, they could make mistakes, and often did, but that
a government frozen in indifference to the needs of a citizen was
something that he would not tolerate. I think you'll find that
among quite a number of my colleagues.
In fact, the author of this legislation is Dr. McDermott. He is one
of the principal authors, he comes from the cutting edge, he's
worked not only in the United States but in many parts of the
world and so we recognize this. I am particularly aware and I have
for many many years been trying to say pretty much the same
thing in trying to alert those who are comfortable, well-fed,
healthy, with safe places to sleep and live in, that we can't tolerate
even one American who would be deprived and so many systemati-
cally deprived as you have described. So, your testimony here is of
extreme value to those of us trying to bring this issue to the level
of consciousness and awareness of our colleagues who are beset
with numeral issues. I mean, a host of issues that are all clamoring
for their attention. Your testimony will never be able to be a
match by anybody.
The only question I have is just as to your present status. I be-
lieve Mr. Porter has explained. I am not too sure that I understand
your present status, Mr. Overrocker, where you are and what
means you have of actual surviving.
Mr. OVERROCKER. My present status, I am currently a resident of
the Schwartz Housing Program at Whitman-Walker Clinic and I
receive social security, a minimum social security payment a
month.
Mr. GONZALEZ. And that's about all?
Mr. OVERROCKER. And that's it, yes sir.
Mr. GONZALEZ. And Ms. Jarrels, are you living in Birmingham
still? I believe you said you were.
Ms. JARREL5. Yes.
Mr. GONZALEZ. But you have no place?
Mr. JARREL5. It's just for a short stay.
Mr. JARRELs. It's just over-as I understand it, it's an overnight
stay?
Mr. JARREL5. Temporary.
Mr. JARREL5. Temporary? -
Mr. JARRELS. Yes.
Mr. GONZALEZ. Well, we will instruct the Staff to follow through
after the hearing and be in contact with you and those who are ac-
tually actively assisting you and see what's. suggestions and what
avenues of help and resources might be available.
PAGENO="0021"
17
Ms. JARRELS. Thank you.
Mr. GONZALEZ. At this point I'll recognize Dr. McDermott.
Mr. MCDERMOTT. Mr. Chairman, I simply want to say anybody
who comes before a congressional committee is scared and worried.
You people are real peoples.
Ms. JARRELS. Thank you.
Mr. MCDERMOTT. Anybody who can come and say what you did
has got lots of guts. We're with you. Thank you.
Mr. GONZALEZ. Ms. Pelosi.
Ms. PEL05I. Thank you, Mr. Chairman. I, too, want to thank the
witnesses for their very, very poignant testimony.
Mr. Porter, I would say that your premise at the close of your
remarks that-I don't think you need to be that gloomy. As I men-
tioned in my opening remarks, I believe that the attitude in Con-
gress is one that people with AIDS or people with HIV-infection
will have a long life and we have to prepare for life.
All of our witnesses bear testimony to the fact that the saddest
irony of all to me is that if Stewart McKinney, our former col-
league, who was the author of the bill for homeless which was sub-
sequently named for him, if he were alive today he would have a
difficult time finding housing, and that is, I think, an irony that
will not be lost on the Congress.
Thank you, Mr. Chairman.
Mr. GONZALEZ. Very true.
Mr. FRANK. Mr. Chairman.
Mr. GONZALEZ. Well, if Mr. Schumer yields, we'll recognize Mr.
Frank.
Mr. FRANK. Thank you. I just had a question regarding housing.
I understand there was a problem for people obviously who are eco-
nomically distressed as to affordability and I apologize for being
late so I may have missed this, but did any of you try to get private
housing because one of the things we did do in the Fair Housing
Law was to outlaw discrimination in either the ownership or rental
of housing based on someone's status either with AIDS or with
HIV, but passing a law and getting it enforced are not always the
same thing. Did any of you have any experience of that sort? Of
trying to get housing and being denied it because of your health
status? Yes, Mr. Porter?
Mr. PORTER. Well, the way the system is in New York, OK, you
can go out and look for private housing on your own. You're guar-
anteed a certain amount of money per month, but usually what
happens is that most of the landlords today do not want to be both-
ered with people who are on welfare because they don't feel as
though their money is guaranteed. What happens also is that by
the time you get the money that's needed to obtain the apartment
it's always rented because you have to go, you know, through the
bureaucracy.
Mr. FRANK. I understand, but that was the economic problem.
None of you specifically encountered a refusal for housing based on
your AIDS status or HIV status.
Mr. PORTER. Well, actually when you go-you have to fill out ap-
plications now for apartments, OK, they want to know your
income. If you tell them that you're not working but that you're on
SSI they want to know why. So, if you tell them that you're AIDS
PAGENO="0022"
18
HIV positive they're not going to say we refuse you because you're
HIV positive, they probably will give you some other excuse, but
it's very very difficult.
Mr. FRANK. Well, I appreciate that, and that's what I'm trying to
find out, how well this law is being enforced. Did you encounter
any particular example of that? Were you turned down after put-
ting in an application or was it the economic?
Mr. PORTER. Well, that's the point I'm bringing, you never will
know. The way it's set up--
Mr. FRANK. My question was whether you had ~applied and been
turned down.
Mr. PORTER. I have applied, but I cannot say if I was--
Mr. FRANK. Mr. Porter, I appreciate that, and what I'm trying to
do then is to find out what the next step would be and whether or
not-you want to know why, it may be, and I'm not sure whether
under the law they may not-ordinarily under the law if you can't
discriminate based on a certain fact, you can't require that fact be
put down on an application, and we might ask that that be checked
into by the welfare authorities in the city of New York, namely to
tell people that they may not ask that question or they may not
require that kind of answer.
Have either of the other of you, did you try to get private hous-
ing?
Mr. OVERROCKER. No, I did not, I didn't have any resources avail-
able.
Mr. FRANK. I realize that, the economic problem is a major prob-
lem. It's primarily obviously under the jurisdiction of the Judiciary
Committee, but I think that's one of the things that we want to
also look into and that does have the oversight, the enforcement
responsibility here, and we ought to be asking about that, and it
may be based on what Mr. Porter said is that we want to make
sure that people are required to give that answer because the usual
principal is that if people can't discriminate on a certain basis,
they haven't got the right legally to get that information out of
you. So, that's one that I would ask the staff to follow up on to see
whether we're doing any protection of people in that regard.
Thank you, Mr. Chairman.
Mr. GONZALEZ. Thank you very much.
If you'll yield to me a little here. Mr. Frank, unfortunately, we're
still a very much divided nation. With or without AIDS, with or
without anything else, even on a racial basis, we still have out and
out rank discrimination. Fair housing laws are not being enforced.
They haven't been enforced, and it looks like they won't. I don't
care where you go, Texas, New York, California. The problem is
that, and I think Mr. Porter said it all, that is where a society
doesn't make room for every member or component of the society,
you're going to have dislocations. What I'm worried about is, and
I've expressed it for years, is that there is a social price every socie-
ty has to pay for this, and as it compounds, the price will be great-
er in social disarray. I don't care how we do economically. We can
come out of all this ruckus we're hearing about the trading with
East Europe and all that kind of stuff, much of which may be illu-
sory, but we will still have to face the other factor in our communi-
ties, crime, drugs. Mr. Porter jg right, the most e~pendab1e-ili
PAGENO="0023"
19
fact, it's an endangered species in our citizenry-is a young male
black between 20 and 25. They're dying from violence in inordinate
numbers, and the other consequential and concomitance of social
disorder.
Housing always from the beginning of mankind is one of the
three fundamentals necessary for human existence-shelter, cloth-
ing, and food. I heard President Roosevelt say that back in the dim
and dreary days of the Depression when he talked about a Nation
which was one-third ill-housed, ill-fed, and ill-clothed. I'll tell you
that we have those segments present in our society in substantial
numbers. It's way more than one-third now. I must agree with Mr.
Porter, this segment of our society tragically and unpardonably is
facing a tremendous crisis and there appears to be no matter how
much we talk about it. This is what I keep telling all the witnesses
we've had on our housing bills for 8 years. You know, everybody
talks beautifully and we get administration spokesmen, we get pri-
vate sector, we get colleagues and envision beautiful programs, but
we don't seem to have the capacity to work corporately, collective-
ly, effectively in remedial situation. Target it and overcome the
problem.
I don't know what it is. I hope we haven't reached the point in
our development where it just isn't forthcoming any more, because
I know that as sure as there is an all-mighty power, we will ines-
capably have to answer for this social injustice. I just can't help
but point out that as far as the laws we've passed, either through
lack of enforcement or lack of funding, they are just simply not
being carried out.
I can imagine, Mr. Porter's case particularly, being black. In
some areas of our urban areas in Texas, why, and if you even men-
tion AIDS, well, my gosh, you're done-in. I've been fortunate, Mr.
Porter, the Lord has been kind to me. I have lived almost 74 years,
and I've seen a lot of things. I can recall in the depression the
amorphous, shapeless, gruesome fear about tuberculosis. San Anto-
nio was the tuberculosis capitol of the country, and I can't evoke to
you-well, you know better than I do, the atmosphere. Everybody
was sure that you could contact tuberculosis by breathing the air.
Then, finally, the war came and during the war a drug was devel-
oped and you had pretty effective control.
Tuberculosis was a direct result of overcrowding, substandard
conditions, malnutrition and the like. We've had a reoccurrence
and an increase in the incidence of tuberculosis in the dense urban
areas of our country. I've been in contact with the Atlanta Center
of Disease Control and there's no question about it. These are inci-
dence that are tied in.
The other fact was that after that scare we had the venereal dis-
ease. Well, my goodness, you'd think that if you sat on a toilet seat
you were going to get a venereal disease. Then after that came the
polio scare, and of course there's been one or two in between, not
as severe, but now you have AIDS. When you have fear because
you don't know, fear is the biggest enemy, because you can't fear
anything too long before you begin to hate it, or detest it, or just
absolutely turn against it. I just think that we ought to look at the
facts. I think Mr. McDermott brought it out. I know what we were
hearing here on the House floor just 2, 3 years ago as compared to
PAGENO="0024"
20
what we now face, and that is that a lot of things that were as-
sumed and feared are not so.
I join Mr. McDermott in saying that you had to have had a lot of
courage, but I can't also just estimate how helpful it'll be for us to
effectively confront this issue, particularly from the housing stand-
point.
Mr. Schumer.
Mr. SCHUMER. Yes.
Mr. GONZALEZ. Pardon the sermon.
Mr. SCHUMER. No no no. Good sermons like that are always
worthwhile, Mr. Chairman. Some of the other's I've heard I've
stayed less awake for.
Anyway, I'd just like to make two quick points to the witnesses.
One, to underscore your importance in being here. You know, we
hear -lots of When you're here in Washington you hear all sorts of
abstract arguments. Although they're important, you lose touch
with what is really Ehappening, and the fact that the three of you
have come here to tell- your personal stories I think has a much
greater:irnpact than allthe~abstractions and rational and deductive
reasoning. --So, --as the chairman said, your testimony means some-
thing.
The second thing I would say is I'm a little more optimistic, I
guess, than -you might --be, -:Mr. Porter, or the chairman was. What
we're -learning in the 1990s is that we need every one of our citi-
zens. You know, America is a very individualistic country and it's
sink or swim on your own. The New Deal was a big success and got
70 or 80 percent of the people living in a decent way, so there
wasn't so much impetus for change for the last 10 or 15 years. I
think what we're now learning is with all the changes in the Soviet
Union and Eastern Europe that we have a new challenge ahead of
us, which is an economic challenge. The challenge is how are we
going to keep the pie growing in this country.
Well, you say how does that relate to you I believe that every
time a young man or a young woman lies wasted of AIDS or of
drugs or -of poor health or poor education or whatever, that it's not
only their loss and~ their family's loss, but it's really the country's
loss, because you're-::three bright young articulate people and this
country needs-you. We- can't afford any more to lose you and that's
-not just for your good! --What I've said is not simply a humanitari-
an impulse, but it's - a national imperative and we're sort of begin-
ning to see the faint glimmers of that enter into the political
debate. When we see it a little more deeply and a little more
strongly I think maybe the -political tides will change some. So,
hopefully your testimony helps move those barriers back a little bit
and I thank you for coming.
Mr. GONZALEZ. Mr. Flake.
Mr. FLAKE. Thank you very much, Mr. Chairman.
First, my apologies for being late because of my flight this morn-
ing. I did come in on Mr. Porter's testimony and I want to com-
mend those who have to testify here. Unlike many of my col-
leagues, I pastor a church in New York, and I am faced with this
scourge of drugs and the problems that are manifested by people
who have AIDS. I am burying people who have died because of it,
and I am counselling families who are involved in trying to deal
PAGENO="0025"
21
with not only their own feelings of guilt, but why these things
happen. So, I'm here this morning a bit appalled at the testimony
because I realize that it is very real to the lives of so many people.
I am moved by it, and hopefully this Congress will also be moved to
a point of sensitivity and compassion because I don't think that it
is the role of government to exacerbate the problems of people who
suffer, but rather to bring them some type of relief. Therefore, your
coming ought not to have been in vain. I would pray that is not the
case, but that as the members of this subcommittee hear you that
we will be able to share the information with others. More impor-
tantly, I hope that members of this subcommittee will be joined by
other Members of the Congress to go into communities like the one
I serve and see the problems that you face and understand that
they are matters of life and death. Hopefully 1 day, though we
cannot legislate sensitivity and compassion, we can bring people to
a better understanding of the kinds of problems that you face.
So, thank you for coming. Thank you Mr. Chairman for holding
the hearing, and I yield back the balance of my time.
Mr. GONZALEZ. Well, thank you, Mr. Flake. We've held this panel
pretty long. We have three more panels. However, the Chair
always recognizes the Members that give a commitment to the sub-
committee and give it priority. We have approximately some 8 min-
utes and may be able to release the witnesses by 11. Is there any
objection to that? We'll recognize Mr. Torres.
Mr. TORRES. Well, thank you, Mr. Chairman. I just want to asso-
ciate myself with all my other colleagues and their very eloquent
statements this morning as well as the witnesses. Certainly again I
want to echo the Chairman's commitment and the chairman's
lauding of our colleague, Mr. McDermott, in H.R. 3423. I think that
H.R. 3423 "AIDS Opportunity Housing Act," speaks to the issue of
providing safe, decent, and affordable housing for people with AIDS
and I'm glad to be a part of this subcommittee that is moving forth
on this question.
Thank you, Mr. Chairman, I yield back the balance of my time.
Mr. GONZALEZ. Thank you, Mr. Torres.
Mr. Neal.
Mr. NEAL. Thank you, Mr. Chairman. I'd like to associate myself
with the comments that have been offered earlier. I think that the
term that strikes me as the most important in this period is the
simple term that was offered by Reverend Flake and that was that
the key here is compassion and understanding. I recall the first
call that I took in the Springfield Public School system when it was
discovered that a child had AIDS and I think that the manner in
which we treated it allowed that child to be put into the main-
stream of the school system with minimal controversy. I would
hope that the evidence that's been offered here this morning is in-
dicative of the kind of treatment that young people and those that
are not so young in America are going to receive over the course of
the next few years as we try to fight this dreaded disease.
Mr. GONZALEZ. Mr. Hoagland.
Mr. HOAGLAND. Thank you, Mr. Chairman, for recognizing me.
Let me indicate only that there is little left to be said, but I do ap-
preciate greatly the courage these witnesses have shown in coming
PAGENO="0026"
22
before us and telling us of their experiences. I think we all feel
very deeply for them.
Mr. GONZALEZ. Thank you, Mr. Hoagland.
I want to' remind the subcommittee that there have been some
gross injustices because of this inordinate fear running rampant. I
read, or I saw on TV, the case of a white female who in -a small
mid-west community, and who up to then had been a very integral
part of that society, went to church every -Sunday. I believe she was
a teacher, I don't recall" correctly, and one day her medics reported
that she had reacted positively -to the virus. So, in her description
she was trying to "express what a calamitous mental state that put
her- in, but' then she was resolved to do the best she could. Sudden-
`ly she found- herself being excluded, even from church, as soon as
--she communicated to `her- family, and some of the neighbors found
out. ~Even the -minister told her, -well, we think it's best that you
don't show up for church. service. It turns out that one month and
a half or so after that the report came out it surfaced that they
had misdiagnosed her and she did not register positive for the HIV
virus. I believe she hired herself an attorney, and I'm glad she did,
and received some compensation for her ordeal. But regardless of
that, I don't care how much compensation she ever got, I think it
reveals a state of mind of near hysteria that we have been experi-
encing in our country. Therefore, I really don't have words with
which to praise my colleagues that have looked at it from the shel-
ter needs that I think are prime. I think the witnesses here today
indicate that, and we want to thank you very much.
Have I missed anybody else? Mr. Frank, did you have any addi-
tional questions? Well, thank you very much. I for one will pray
that you will overcome this and God willing soon. I think that
you'll be able to see the day where you can live through it all and
find that human ingenuity will discover a antidote or a cure. But I
can't tell you in words how grateful we are to you, Ms. Jarrels, Mr.
Porter, Mr. Overrocker. As I said earlier we will have members of
the Staff in communication wih you and your advisors and those
that are at present related to you in an attempt to help you.
Mr. OVERROCKER. Mr. Chairman.
Mr. GONZALEZ. Yes, sir.
Mr. OVERROCKER. I would like to submit my speech as a written
testimony also.
Mr. GONZALEZ. Certainly.
Mr. OVERROCKER. If that's all right.
Mr. GONZALEZ. We will without objection place your written pre-
pared statement following your oral testimony which has been
taken down by the reporter.
Mr. OVERROCKER. OK, a copy of mine has not been turned in, so I
don't know how to go about that.
Mr. GONZALEZ. We'll pick it up, one of the staff will get it, and
we'll give it to the reporter. You will also get a transcript or a copy
of today's proceedings for your review and correction or modifica-
tion. Also, there may be some Members who may wish to submit
some questions in writing to you. If so, they would have to do it by
the time you receive the transcript.
Mr. MCDERMOTT. Mr. Chairman.
Mr. GONZALEZ. Yes.
PAGENO="0027"
23
Mr. MCDERMOTT. I, as a part of this, I would like-Ms. Pelosi and
I just received a letter from the mayor of New York, Mr. Dinkins,
and I would like to ask unanimous consent to enter his whole
letter into the record. He has both some comments on it and some
recommendations and I would like that also to become a part of
the record.
Mr. GONZALEZ. Without objection it is so ordered. We thank you
very much.
[The letter referred to from the mayor of New York can be found
in the appendix.]
Chairman GONZALEZ. Our next panel, No. II, consists of Ms. Vir-
ginia Shubert, the AIDS project director of the National Coalition
for the Homeless, that, from its inception, has been absolutely in-
dispensible; Ms. Patricia Sullivan, director of the Peter Claver
Community, AIDS/ARC Services Division, Catholic Charities of
San Francisco, CA. Ms. Pelosi is here, and I'll ask her to introduce
you at the time that we get to her.
We have Mr. Jim Graham, administrator of the Whitman-
Walker Clinic that we just heard about from Mr. Overrocker; and
Mr. Barry Bianchi, president of the board of directors of the North-
west AIDS Foundation.
Thank you very much for answering our summons, and if there's
no objection, we'll call you in the order that I introduced you and
begin with Ms. Shubert.
STATEMENT OF VIRGINIA SHUBERT, AIDS PROJECT DIRECTOR,
NATIONAL COALITION FOR THE HOMELESS
Ms. SHUBERT. Thank you. Good morning. My name is Virginia
Shubert. I'm the director of the AIDS Project of the National Coali-
tion for the Homeless.
The National Coalition testified before you, Chairman Gonzalez,
in 1982. You've always been concerned about the needs of homeless
people. I think we all regret that we are coming back here today to
talk about the fact that there is still not adequate housing for
homeless people in. this country, including homeless people with
HIV.
This morning, you heard some eloquent testimony from homeless
men and women living with AIDS. Each story is unique, but their
voice is legion.
In New York City alone, there are some 8,000 to 10,000 homeless
people living with AIDS. This number will soon double and even
triple as AIDS spreads among persons who are already homeless
and forces homelessness on those who are only marginally housed.
Yet, a special New York City unit intended to provide housing
assistance and comprehensive social services for low-income people
living with AIDS is already on the verge of collapse under the
burden of just over 3,000 client cases.
Crisis management forces the presumption of ineligibility on des-
perately ill people, as we heard Mr. Porter describe. Hospitals in
need of beds discharge people into the streets or refer them to
clearly dangerous public shelters, where they are left until they
can no longer bathe or toilet themselves. People struggle for surviv-
PAGENO="0028"
24
al while the Government turns its head, hoping that they will all
just go away.
A recent report suggests that 6.5 percent of homeless youth age
16 to 20 in New York City are HIV seropositive. The seropositivity
rate reaches 17 percent among youth who are 20 years old. Yet the
city offers no housing or support services for these young people.
Meanwhile, the only shelter in New York for homeless youth, a
private religious institution, prohibits the distribution of condoms,
knowing that a majority of homeless youth are forced at some
point to engage in sex for money, food, shelter, or drugs.
Its' clear that our. housing and social service system is failing.
Even more clear is our lack of political will to change that situa-
tion.
That's New York, you say. "Thank God we don't have those
problems." But if you say that, you lie to yourself, and for the sake
of that lie, people will die, for AIDS and homeless are indeed pan-
demic cofactors.
The National Coalition for the Homeless recently completed a
study of homelessness and AIDS in 26 communities and rural
areas. I have provided a full copy of this report for your consider-
ation, but I'd like to share some of its findings with you.
We found that in every community we surveyed, homeless people
with HIV are fighting to live without medical care, without food,
and without housing. In Richmond, Virginia, certainly not the
AIDS epicenter, while all persons tested for HIV have a seropositi-
vity rate of 3 percent, at a clinic for homeless people in Richmond,
the seropositivity rate was 12 percent. Yet, there are only three
beds available in the entire State of Virginia for homeless people
living with AIDS.
In Delaware, some 30 percent of the 5,000 people known to be
HIV seropositive are in need of housing assistance. After a 2-year
struggle against community opposition, one private organization
has created an eight-bed transitional group home, the only current-
ly planned housing for people with AIDS in that State.
Chicago has no housing for homeless people with AIDS, yet one-
third of the drug users who are HIV seropositive in that city are
also homeless. One agency in that city reports receiving 15 to 20
new referrals every month to `assist homeless people with AIDS.
In Los Angeles, people with AIDS discharged from hospitals to
~shelters are warned not to reveal their medical conditions because
only five out of 42 `shelters in that city will accept someone who
they know ~to be HIV seropositive. LA has no supportive housing
for homeless people with AIDS.
In Seattle, Washington, an estimated 5 to 15 percent of the
homeless population is HIV seropositive.
The State of New Jersey has a homeless drug user population
~second only to New York. The only supportive housing in the State
for' homeless people with AIDS is a single nursing home. Three
months ago in Newark, New Jersey, a homeless man with AIDS
was found dead in a building foyer three blocks from the hospital
from which he had been discharged into the street only 2 weeks
before. Newark officials have consistently opposed the development
of any supportive housing for people with AIDS in their city.
PAGENO="0029"
25
No one really knows the actual number of homeless people with
AIDS, although identified populations exist in each of the 26 com-
munities and rural areas we surveyed. That included North Dakota
and the State of Maine.
What we do know is that the numbers will continue grow as HIV
infection spreads and chronic illness depletes the ability of persons
who are currently housed to meet the rent. We also know that
little if anything is being done in most of these places to get these
persons housed.
Why have AIDS and homelessness become such power cofactors?
The answer isn't too difficult. Ours is a society in which neither
housing nor health care is considered a basic right, where homeless
had become endemic long before AIDS came on the scene. It's inev-
itable that the weak will lose in the competition for scarce re-
sources, whether they are homeless people in need of preventive
health care, or people with AIDS in need of housing.
Despite our much touted AIDS education and prevention pro-
grams, we have done almost nothing to ensure that homeless per-
sons can avoid HIV transmission. Most homeless people, like most
of us, engage in sexual activity, but very few shelters or other
homeless providers provide their clients with adequate safe-sex in-
formation. Even fewer have gone to the trouble to provide the re-
sources by which to practice safer sex. Given a choice between
buying condoms or food, which would you take?
Many homeless people are drug users, yet, across the country,
drug treatment capacity falls woefully short of need and demand.
Efforts to prevent transmission among those who cannot or will not
obtain drug treatment have been equally inadequate.
For people living with chronic illness, including AIDS, disability
entitlements across the board are inadequate. For example, the es-
timated monthly living expense for a single person in Seattle,
Washington is $1500, yet the SSI monthly payment is only $400.
In addition to this general problem, people living with AIDS face
special hurdles. For example, HUD, assuming that AIDS is inevita-
bly and quickly fatal, has made a policy decision that people with
AIDS are not handicapped under section 202 of the Federal Hous-
ing Act since their impairment is not expected to be of a long, con-
tinued, and indefinite duration. Thus, people with AIDS are cut off
from even the meager existing housing funds for people with dis-
abilities, including, ironically, McKinney Act funds, named to
honor a man who died of AIDS.
The only Federal funding stream available for the creation of
residential facilities for people with AIDS a this time is Medicaid.
In New York, for example, these funds are being used to develop
HRFs, health-related facilities, and SNFs, still nursing facilities, as
part of a so-called continuum of care.
But let's be clear about two points in this regard. First, so long
as what is offered is a place to die and not a place tO live, the con-
tinuum of care is nothing more than propaganda. Second, while
some people with AIDS are in need of skilled nursing care, HRFs
and SNFs are not an alternative to adequate housing, and they
never will be. They are medical facilities, and as such, they rarely
respect the privacy of the individual, nor do they facilitate inde-
PAGENO="0030"
26
pendence that people with AIDS need in order to live their lives as
whole persons.
Beyond that, HRFs and SNFs are not the answer to the need for
appropriate housing because building and staffing requirements
make them too expensive to be a sOlution for more than a compara-
tively small number of people.
Due to their great expense, they are usually large, with beds for
200 to 250 people. Such large warehousing facilities make personal-
ized care and relief from day-to-day stress impossible. Also, by their
size, they invite NIMBY, the not-in-my-backyard syndrome.
Finally, these facilities are wrong because they are of no future
use. I, for one, believe that the AIDS crisis will be brought to an
end. We must act in that belief. The housing needs of people with
AIDS must be met with affordable units that can become part of
the permanent housing stock once this crisis has passed.
I have to mention that people with AIDS who are also drug users
face even greater barriers to housing. In every community we sur-
veyed, drug treatment was virtually impossible to obtain. In addi-
tion, recent Federal legislation excludes drug users from participa-
tion in any federally funded housing program.
Even without this Federal prohibition, almost all housing pro-
grams for people with AIDS require that the applicant be drug-free
as a condition for housing. Clearly, without drug treatment people
cannot obtain housing, nor can they obtain proper medical care or
the other basic services they need to survive.
The problems of homelessness and AIDS are not without solu-
tions. To begin with, an across-the-board increase in funding for
people with disabilities is essential. Beyond that, we must develop a
Federal funding stream that encourages immediate development of
nonmedical housing for people with AIDS.
The AIDS Housing Opportunities Act is one small step in the
right direction, but I must emphasize, it's only a small step in com-
parison to the desperate need. The entire sum allocated over 2
years by this legislation would barely cover the existing capital
cost needs for supportive housing New York City alone.
Further, this legislation doesn't guarantee that the money that's
allocated will create medically and psycho-socially appropriate
housing rather than inappropriate forms of institutional care. I
urge you to consider protections that would ensure that funds are
used appropriately.
State and local governments must also begin strategically to
target their resources. To be sure, areas hardest hit by the epidem-
ic are already overburdened and do not have the resources to devel-
op this housing on their own, but they could do much more than
they have done so far. We can't excuse the failure of State and
local governments to assume their share of the burden, but we
must compel every available resource until the needs of homeless
people with AIDS have been met.
Of course, we won't achieve any of these solutions unless we
force recognition of the need and generate the political well to do
something about it. So let me conclude by suggesting several steps
in that direction.
First, we must educate ourselves. By that, I mean we must allow
the people who are experiencing the pain to teach us. Homeless
PAGENO="0031"
27
and near-homeless people living with AIDS are the experts, and
they must participate both in identifying the problems and in cre-
ating the solutions. They cannot do this so long as we insist on
treating homeless people with AIDS as persons only to be pitied or
avoided, cared for or scorned, rather than affording them the digni-
ty of their own voice and forums from which to speak out of their
own knowledge and experience.
Second, we must recognize that housing and basic social services
are an intrinsic part of health maintenance. The AIDS world is a-
buzz right now with talk of AZT, DDI, aerosol pentamidine and the
like. But all the wonder drugs that the FDA could produce won't
do a damn bit of good so long as people are denied access to the
shelter and the nutrition that they need to preserve their health.
Health care is a human right, so is decent housing.
Thank you.
[The prepared statement of Virginia Shubert can be found in the
appendix.]
Chairman GONZALEZ. Thank you, Ms. Shubert.
Mr. FRANK. I would like to beg the indulgence of my colleagues. I
have a meeting shortly. Could I ask one question at this point, but
I'm going to have to leave before we get into questioning.
Chairman GONZALEZ. There is no objection. Certainly.
Mr. FRANK. Ms. Shubert, one area I have been trying to follow-I
have been asked to intervene in a 202 case for someone with AIDS.
I thought we had resolved it successfully in the individual case, but
I guess we were able to do that in the individual case, but the in-
terpretation is still, as you say--
Ms. SHUBERT. I think the most disturbing thing is that in the
President's proposed budget, he would explicitly exclude people
with AIDS from the 202 program.
Mr. FRANK. Oh, he asked for that to be made--
Ms. SHUBERT. That's my understanding, yes.
Mr. FRANK. OK. Because we did have a couple of cases where we
were able to get some people in.
Ms. SHUBERT. There is also the remaining issue, which is that it's
important that 202 funding be available to fund programs that are
dedicated to housing for--
Mr. FRANK. I understand that, but I like to do one question at a
time. What you're telling me now is that the current interpretation
by HUD is that people with AIDS are not eligible for 202 housing?
Ms. SHUBERT. That's my understanding, yes, sir.
Mr. FRANK. All right. Thank you, Mr. Chairman.
Chairman GONZALEZ. I was going to ask Ms. Pelosi to introduce
the witness, Ms. Sullivan, that is, since she's from San Francisco.
Ms. Pelosi, you're well acquainted with her, and she's acquainted
with the Catholic Charities activities in San Francisco.
Ms. Pelosi.
Mr. FRANK. I'm sorry, may I interrupt? Members of the staff, bi-
partisan staff coalition, just told me that apparently, there may be
some unclarity here, and I was just given a memo from the general
counsel to HUD in which they say people with AIDS are eligible in
202. We don't have the setaside, but I'm told that the ruling of
HUD now is-if there's some uncertainty here, we ought to clear
PAGENO="0032"
28
it-that people who are suffering from AIDS are eligible for 202
housing?
Chairman GONZALEZ. I think we had.
Mr. FRANK. I understand that.
Chairman GONZALEZ. In fact, the last hearing brought out the
fact that there is no set policy in writing. However, the question is
the mixture of the disabled, which AIDS victims are now defined as
disabled. But whether it has been carried far enough to effectively
interpret it as really realistically allowing them into 202 housing is
questionable.
Mr. FRANK. Mr. Chairman, let me just, if I could, submit this
memorandum because, as I understand it, what it says is-this is a
memorandum from Mr. Keating to Mr. Fitz; Mr. Keating, the gen-
eral counsel, and Mr. Fitz, the assistant secretary for housing-202
projects may be limited to only four classes of occupancy: elderly,
the developmentally disabled, the chronically mentally ill, and the
physically handicapped, which last category includes persons with
AIDS and other persons with conditions of a degenerating nature.
Now, there may be some dispute as to how badly off you have to
be, and I'd like to get that clarified, but I understand there was a
separate issue as to whether or not you* can have money set aside
and applied to people with AIDS,~ and.~that's one ~that we would like
to do. But there is this other question about whether, if you have
AIDS, you are eligible, and this ~memoraiidum would seem to say
you are.
Chairman GONZALEZ. Yes.
Mr. FRANK. If there's a dispute here, ~we ought to get that--
Chairman GONZALEZ. Once the definition of "disability" is ap-
plied to an AIDS victim, that, of course, is a moot matter as far as
a written policy is concerned. However, last week's hearings
brought out the fact that what HUD or some officials are contem-
plating is a ratio. In other words, what mix shall you have of elder-
ly with disabled.
Mr. FRANK. No, I understand that, but I did want to get that sep-
arate answer. Ms. Shubert, am I not following this correctly?
Ms~ SHUBERT. Well, two points. One is that I think that the issue
that remains is whether a person with HIV would be required to
have another disabling condition as well.
Mr. FRANK. OK.
Ms. SHUBERT. In other words, you couldn't discriminate against
people on the basis that they were HIV-infected, but it is not clear
whether HIV-illness itself is a disabling condition.
The more important point is that no programs have been ap-
proved today.
Mr. FRANK. No, please, Ms. Shubert, please don't compress two
~questions. I understand there is a separate question about pro-
grams for people with AIDS, but there is a separate question as to
whether or not people with AIDS are eligible for 202 housing, and
that was the one that I wanted to get answered, because I had
raised that issue and I thought we had resolved it favorably.
Maybe I misheard your testimony. I thought you were suggesting
it wasn't. I'm now told yes, it is, but I want to go back to that. That
is a separate question, and you really do have to answer questions
one at a time if we're going to understand things.
PAGENO="0033"
29
Ms. SHUBERT. Right. As I said, my understanding is that there
remained-and I don't know whether the second point has been re-
solved, which is whether HIV on its own was sufficient.
Mr. FRANK. If you have full-blown AIDS with no secondary infec-
tion, you're not eligible? Is that the-that may be the problem?
Ms. SHUBERT. I think it's a separate question whether HIV itself
is considered a handicapping condition, which is a separate ques-
tion from whether you could discriminate against a person on the
basis of HIV--
Mr. FRANK. Well, there are three. We're talking about whether
or not you have the virus, whether or not you have actually got
full-blown AIDS, and whether or not there is a secondary infection,
and which of the-obviously, if you've got some secondary infec-
tion, we're saying, apparently, it's OK, but what is it with the
other two? Do you know?
Ms. SHUBERT. Well, as I said, my understanding, at least at some
point, was that it was-the issue was whether AIDS itself was a
handicapping condition, or whether there needed to be another
handicapping condition;
Mr. FRANK. A secondary infection. OK.
Ms. SHUBERT. Right.
Mr. FRANK. I'd like to write to HUD, and let's get-let's write, if
*we could, a fairly specific letter with the various conditions and get
that answer in writing.
Ms. SHUBERT. I would invite your attention to the issue.
Mr.. FRANK. I would like to get that result. I think we have to
write to HUD and say, "What about someone with the virus? What
about someone with full-blown AIDS without a secondary..infection,
and then what secondary infection?" We ought to see how they're
interpreting it, and then if we don't like their interpretation, we
have to press them to change it.
Mr. MCDERMOTT. I think, if the gentleman will yield, the ques-
tion really gets down to Mr. Porter's question before, the things he
raised, is the question of the bureaucratic definition of getting des-
ignated as SSI. In other words, if you have AIDS, then you've got
to go through the process, and that's a long process, and if you
have AIDS, you need help now. The question is really will they
accept the doctor's diagnosis of AIDS and put somebody into a
housing program rather than force them to go through the whole
SSI program?
Mr. FRANK. Again, it may seem peculiar, but there are a lot of
questions. It is not the real question or this question, all the ques-
tions have to be answered.
The first question is, are they legally eligible? If they're not le-
gally eligible, it doesn't make a difference what the bureaucracy is.
If they are legally eligible, then the question is are they. enforcing
it right? But it really doesn't do to compress the questions because
then we don't know what to fight. And there is a separate question
as to what is the legal eligibility. Then, we have the follow-on ques-
tions as to what extent they are actually carrying it out. I think we
need the answers to all of them.
Thank you, Mr. Chairman. I hope we can get such a letter and
get the answer and share it with people.
27-986 0 - 90 - 2
PAGENO="0034"
30
Chairman GONZALEZ. We will certainly take that under very
strong advisement, and we'll follow through.
Ms. Pelosi.
Ms. PEL0sI. Thank you very much, Mr. Chairman. In the interest
of getting to our witness' testimony, I will be brief except to say
how proud I am that Patricia Sullivan is here representing Catho-
lic Charities in San Francisco as the executive director of Peter
Claver House in San Francisco.
I had the opportunity to bring a number of members of the Ap-
prçpriations Committee to visit Peter Claver House because I
thought it was such a model of resourcefulness, compassion, care,
and effectively meeting the needs of people with AIDS.
Catholic Charities has an additional Rita Dicatia House now
which addresses the needs of women with AIDS/ARC and their
children. I commend Catholic Charities for their leadership on this,
and Patricia for her leadership. But I want to say again to Mr.
Porter, because he obviously has put many questions before the
house, I just want to call to your attention, Mr. Porter, that St.
Peter Claver, for whom the Peter Claver House was founded-and,
I might say, one of its resourcefulness is that it received a HUD
allocation through the McKinney Homeless Act, which I think is a
lesson for others in the country who wish to meet the needs of
people with AIDS or HIV infection.
But about Peter Claver, Peter Claver's life and ministry was
founded on the principal that every individual is loved by God, and
is thus deserving of attention. He spent his time ministering to
slaves who were abducted from West Africa, and was later canon-
ized a saint, and it is in that spirit that I am pleased and honored
to welcome Patricia Sullivan to our committee.
STATEMENT OF PATRICIA SULLIVAN, DIRECTOR, PETER CLAVER
COMMUNITY
Ms. SULLIVAN. Thank you, Mr. Chairman and the members of
the committee.
My name is Patricia Sullivan and I am the director of Peter
Claver Community, a 32 room residential facility in San Francisco
created for homeless persons with AIDS or symptomatic HIV.
This program is part of the AIDS/ARC Services Division of
Catholic Charities, San Francisco, and is sponsored by Catholic
Charities on behalf of the Archdiocese of San Francisco.
My background is in the humanities and psychology. For the last
4 years specifically I have worked with people living with HIV/
AIDS. Those I see grapple with diverse and stark issues-AIDS,
mental health, neurological impairments, substance abuse prob-
lems and homelessness.
The housing needs for persons with AIDS presents an incredible
challenge requiring a continuum of care determined by the pro-
gression of HIV and the concomitant level of required, desired or
available care. Moreover, housing like everything else associated
with AIDS is enormously expensive.
Congresswoman Nancy Pelosi indicated in a November, 1980 ar-
ticle for the periodical "American Psychologist" that "the total cost
of treating AIDS patients in 1986 was approximately $1.1 billion.
PAGENO="0035"
31
The projected cost of care for AIDS patients in 1991 is estimated to
be $8.5 billion."
These figures are staggering. They do not even include the hous-
ing and related social service needs of those with AIDS or sympto-
matic HIV.
In the last decade housing for the homeless with HIV in San
Francisco has been provided through a collaborative effort. This in-
volves Federal, State and local government and nonprofit agencies
such as Catholic Charities. It was complimented by the impressive
financial and volunteer resources of private donorship, individuals,
corporations, and foundations. These not only enhanced the quality
of HIV services but indeed built and supported them as well. To
date, they reflect an approximate match of 50 cents on the dollar
for each one spent in public sector funds.
It was partnership between Government and the private sector
that brought us so very far.
Ironically and to measurable degrees this otherwise marvelous
community response has worked to the disadvantage of people
living with HIV and those who have worked with them. It has
masked the enormity of the problem and the critical need for feder-
ally supported housing and social services for the homeless with
HIV.
The greater and more bitter irony lies in this. The problem is not
confined to San Francisco. As AIDS continues to spread and per-
sons with AIDS continue to live longer cities across the Nation will
be called upon to respond to overwhelming needs for supportive
and affordable housing demanded by the HIV health crisis.
But just who are the homeless with AIDS/HIV?
When we speak of homelessness or its pending threat for the
newly HIV-diagnosed we speak not only of the newly made home-
less resulting from their loss of economic stability and caused by
their inability to work. As is more often the case we encounter per-
sons who are already disenfranchised, estranged or geographically
distant from their families or having families who are unable to
provide financial or emotional support. Some will also have histo-
ries of substance abuse, pre-existing psychological disorders, neur-
opsychiatric impairments and/or HIV-related dementia.
Exact statistics on the number and needs of the homeless with
AIDS/HIV are difficult to obtain. Much of what we know is anec-
dotal. The consensus among Government agencies and service pro-
viders in San Francisco however is this. In our relatively small city
of 750,000 citizens there are between 400 and 600 homeless persons
with AIDS/HIV at any given time. There are a total of 147 beds for
this population. San Francisco, with its closely surveyed and highly
esteemed national record of community response to the epidemic is
unable to meet the needs of the homeless with HIV at this present
time.
Candidly, we now face our most serious period in the history of
the AIDS epidemic. Figures from the San Francisco Department of
Public Health, AIDS incidence and mortality by month of diagnosis
or death, 1980 to 1989 report the projections which will have us
leap from over 7800 San Francisco AIDS cases since 1981 to well
over 17,000 cases in 1993-in other words, one in 44 San Francis-
cans would be affected.
PAGENO="0036"
32
Already our city is financially strained to the breaking point.
We're tackling complex social problems and costs related to home-
lessness, AIDS, drug abuse and the aftermath of the October, 1989
earthquake, which I might add damaged or destroyed 15,000 units
of housing, 250 of which were being primarily used by homeless or
low income individuals and families.
With this in mind I would like to describe the spectrum of hous-
ing options and needs. For the sake of clarity I will discuss the var-
ious housing categories as follows: transitional and emergency
housing, scattered site housing without 24 hour support; long-term
residential programs with 24 hour on-site social services; single
room occupancy with services provided by an outside agency or
agencies; family housing; subacute housing for persons with moder-
ate dementia; medical/psychiatric locked facilities for persons with
severe dementia; skilled nursing facilities; and lastly, hospices.
Though the mental health, psycho-social and medical client
needs may overlap in the different categories I will discuss them
individually in order to underscore the multiplicity and magnitude
of concerns.
Transitional and emergency housing-at some point nearly half
of those persons with AIDS or symptomatic HIV no longer able to
work must live on a fixed income of less than $700 per month. The
result is either that the individual becomes homeless or is at immi-
nent risk of becoming so. Shelters are a poor solution to housing
persons with compromised immune systems because medical condi-
tions can fluctuate daily.
Since waiting lists for existing residential programs are long,
emergency housing provides a much-needed service by keeping per-
sons with AIDS or symptomatic HIV off the streets and in a safe
environment but unfortunately, given the lack of emergency hous-
ing, few of the total in need are able to be accommodated. I have
worked with many clients who have spent nights sleeping in aban-
doned cars, under freeway underpasses and alleys or fields or on
and off in rodent-infested SRO's where the added risk of being
beaten and/or raped is commonplace.
The AIDS/ARC division of Catholic Charities and the San Fran-
cisco AIDS Foundation have both implemented emergency housing
programs. These provide housing vouchers for stays of up to 2
weeks at approved SRO's or for use within a system of designated
apartments and flats for 3 to 6 months. Since no more than 20 can
be housed in emergency flats, the vast majority exhaust their 2
week, allotment and end up caught within the cycle of homeless-
ness.
Patterns of chronic substance abuse and/or dementia can only
compound the problem for them.
Scattered site housing without 24 hour support-with the help
rent subsidies, persons who can manage independently can be ac-
commodated in a small group home setting or remain in their
apartments. Ideally there should be no significant medical or psy-
chiatric needs. Visiting nurses, social workers and other health
care and mental health care providers in this instance would be
available as needed on a consortium basis.
Outstanding barriers to the integrated delivery of consortia serv-
ices do exist however. The lack of adequate funds to establish a
PAGENO="0037"
33
single coordinating entity to plan, develop and implement a com-
prehensive system is one factor. Another is that funding for staff
and operations has not been available. Consortium partners have
usually found that their contribution cannot meet the complete
need.
A third barrier is that certain hard-to-reach clients cut off from
sources of help have unique requirements that cannot be adequate-
ly or efficiently, addressed by a single consortium.
A scenario close to reality follows this pattern. At first the indi-
vidual is able to function independently. When his or her health
declines resources for discharge to subacute level housing are un-
available. Health care providers are forced to respond to skilled
nursing needs they are not equipped to handle. What resources can
be tapped to provide medical and attendant care are usually over-
worked and overburdened already. The result is continuing clean-
ing up after someone who is incontinent but does not require acute
care. As such, a hospital will not admit this person. Throughout
the scenario there is the absence of effective and comprehensive
case management for health and social services.
Long-term residential programs with 24 hour on-site support
services-as the Director of Peter Claver Community I would like
to share with you a few examples of the numerous problems and
frustrations that I have encountered over the past 3 years.
We house 32 homeless men and women with AIDS or ARC.
Ninety-eight percent of them have histories of substance abuse,
pre-existing psychological disorders, neuropsychiatric impairment,
and mild to moderate dementia. Our client population is diverse-
10 percent are women; 22 percent are Latino; and 13 percent are
African-American.
Some have histories of IV/speed use. Some are alcoholics. Others
are former heroin addicts who are now on methadone. Some have
abused prescription medications such as Valium or Xanax. Others
have been cocaine and crack users. Almost all have come from
families in which there was substance abuse, physical abuse or
sexual abuse, sometimes all three. An AIDS or ARC diagnosis is
just one more blow, striking a life that has been chronically chaotic
or unstable.
Our goal is to provide a stable, mutually supportive and struc-
tured living environment to people who would otherwise be on the
street. A history of a marginal lifestyle often makes our residents
ineligible for other existing housing programs but they are no dif-
ferent than you or I might be when and if we grapple with issues
of sobriety, quality of life, death and dying and what meaning life
holds for us.
Services that we provide in addition to safe, affordable housing,
include on-site case management, client advocacy, counselling,
psycho-social assessment, psychiatric consultation and assessment,
coordination of substance abuse treatment, adult daycare, and emo-
tional support volunteers.
Money management is mandatory. Under the McKinney Home-
less Act we receive section 8 certification, so residents pay one-
third of their disability entitlement. This means that Catholic
Charities receives the clients' disability benefits and one-third is
PAGENO="0038"
34
automatically deducted to cover the housing costs. The balance is
given to the client.
In-home support services and attendant care are coordinated
with home health care agencies. Weekly on-site NA and AA meet-
ings also take place. Meals are furnished by Project Open Hand,
but many residents can and do prepare meals for themselves and
their friends or co-residents.
Though designed as an independent living program we make
every attempt to enable a resident to remain at Peter Claver
throughout the various progressions of HIV, providing this is in the
best medical and psychiatric interest of the client and the resident
adheres to the program policies.
Care management needs are consistently unpredictable. On a
given day we might respond to the grief of a woman who has just
relinquished parental rights, legally placing her 5-year-old daugh-
ter with an adoptive family; confront a host of disruptive and po-
tentially violent behaviors associated with substance abuse; at-
tempt to orient the client with significant HIV vision loss to his or
her surroundings; or try to cope with the dementia which leaves
the client increasingly confused and forgetful.
In terms of case management and housing needs, dementia is of
the utmost concern. The University of California AIDS Health
Project and the Neuro-Psychology Service of San Francisco General
Hospital with the San Francisco Department of Public Health re-
cently conducted a Survey on the topic of dementia. The results in-
dicated that of 318 persons assessed, 49 percent had at least a mod-
erate degree of cognitive impairment. One-third were described as
having residential placement problems.
Characteristically, management problems would include wander-
ing behavior, home safety problems, memory loss or confusion, and
the inability to take medications without monitoring. For persons
with severe dementia which poses an even higher degree of man-
agement problems this can mean all of the above plus chronic in-
continence and complete loss of short term memory.
At Peter Claver Community, one-third of our funding is to pro-
vide service to 6-8 persons with mild to moderate dementia or with
neuro-psychiatric impairments effectively rendering them ineligi-
ble for most housing.
One aspect of our services is an adult day care and recreation
program which includes art therapy, creative writing, organized
outings including entertainment or cultural events, and a thera-
peutic swim program. The intent is to engage in activities while
avoiding strenuous demands because over stimulation for person
with mild to moderate dementia can result in extreme confusion.
Our intake policy for those with dementia clearly states mild to
moderate. Lack of other supportive housing for persons with mod-
erate to severe dementia means that as our residents' dementia
progresses we are put in the position of dealing with residents who
require extraordinary amounts of care. This creates a great strain
on the staff.
For example, a resident entering the program with moderate de-
mentia progressed to severe dementia. He was ambulatory, mean-
ing no skilled nursing needs, incontinent and unable to take his
medications independently. He was a fire hazard because he would
PAGENO="0039"
35
forget he was smoking a cigarette. He was never at the residence
where his attendants' or nurses' attempted visits but meantime he
had enrolled at the local city college for courses in calculus, Man-
darin Chinese, physics and chemistry. Clearly he posed a manage-
ment problem beyond what we eould handle.
Since he was not in need of acute care, the hospital would not
admit him. I had no choice but to have him~involuntaril~ hospital-
ized at the Psychiatric Emergency Services of a local hospital. He
was released from there to an SRO. Five months later he showed
up on the doorstep of Peter Claver Community believing that he
still resided there. I called around and discovered that he ~had been
in a skilled nursing section of the hospital but since he had left the
hospital, quote, "against medical advice" they refused to readmit
him. With no suitable housing he ended up back at the SRO.
This is not an isolated case. Persons with `severe dementia des-
perately in' need of supervised housing are left to fend for them-
selves in SRO's or end up in the locked psychiatric units of hospi-
tals.
SRO's with services provided by outside agencies-some do not
wish to enter housing programs and choose to remain in SRO's.
This could be the result of chronic substance abuse or simply a
scarcity of housing options. For them it is vitally important to have
consistent adjunct services such as public health nurses, mental
health outreach workers and social workers in order to monitor
medical and psychiatric needs. Despite efforts many of these indi-
viduals slip through the crack. This simply can be caused by some-
one not having a phone, thus unable to connect with health care
providers in a timely and consistent fashion.
For such clients, follow-through with appointments is already
problematic. An unstable living situation in and out of SRO's only
serves to exacerbate this.
Family housing-relatively few housing programs supply housing
for families affected by HIV. The demographic incidence of total
AIDS cases varies from region to region. In some regions it is quite
high and we know that minority populations are without question
disproportionately affected.
With one or both parents sick it is impossible to stabilize a
family without health and social support services. Commonly a
family is comprised of a single mother with children. She may at-
tempt to keep the family intact by living in a studio apartment in
a run-down part of town. She tries to attend to the demands of her
children and her own medical needs while her health declines.
Imagine having to get out of bed and go to the hospital clinic on a
day when you feel so fatigued that you can barely move. Still, you
must take your children with you while you wait for hours for your
appointment. Through all this you are worrying who will take care
of the children if I get hospitalized.
At Catholic Charities we have a house for AIDS affected families
with an emphasis on single mothers with children. The residence of
Rita da Cascia House currently shelters three families.
One family is a woman with AIDS, her husband with ARC and
their two daughters, ages 8 and 12.
PAGENO="0040"
36
The second family is a woman who is seropositive and her hus-
band who is antibody negative, their 2-year-old son who is seroposi-
tive and their 2-month old daughter who is also seropositive.
We are also providing temporary housing for the next 6 months
to a Russian mother and her 5-year-old son who contracted the
AIDS virus through a transfusion. The child was born without a
lower intestinal track and is here in the United States for a series
of operations to help correct the situation.
Four families are on our waiting list at Rita da Cascia. All are
single mothers with one to two children.
Special needs that are poignantly serviced in working with fami-
lies include child care when a parent is ill or hospitalized, issues
around death and dying and loss when a child is watching his or
her parents health decline and placement of the children into
foster homes or adopted families once the parents have died.
Subacute housing for persons with moderate dementia and medi-
cal psychiatric locked facilities for persons with severe dementia,
skilled nursing facilities and hospice-I will just briefly summarize
some of those.
I have already mentioned the critical need for housing for people
with moderate plus dementia on up to severe dementia. San Fran-
cisco Department of Public Health is at this time starting a bidding
process for a facility that would be 24 hour care for people with
moderate to plus dementia. Medical and psychiatric locked facili-
ties do not formally exist but are specifically designated for those
with severe dementia. Skilled nursing facilities and hospice, these
are for people who require more care, maybe not ambulatory, have
more skilled needs in terms of attendant care, need monitoring of
medications and need more supervision than we would be able to
accommodate at Peter Claver Community or at the scattered site
housing program.
This overview of the various and diverse housing options and
needs for persons with AIDS or symptomatic HIV omits areas
which deserve special mention. I refer to programs specifically de-
signed for children and for adolescents with AIDS.
Though the usual means of transmission for children may be per-
inatal, adolescents with AIDS are usually homeless youths who
engage in many high risk behaviors including IV drug use and
prostitution.
A recent exhaustive survey on supportive housing for persons
with AIDS by the New York AIDS consortium indicated that out of
29 cities in the U.S. with supportive housing available, there was a
total of 543 beds available. This does not include skilled nursing
and hospice beds.
At the end of February, 1990, more than 47,000 persons were
living with AIDS in the United States. If even 10 percent of this
population are or become homeless, and if we allow for the fact
that many others with symptomatic HIV will become homeless as
well, we can expect not hundreds but thousands and thousands of
persons with HIV illnesses to be homeless throughout the nation.
They will present a particular crisis for those cities like San Fran-
cisco which are the most heavily impacted by this epidemic.
I cannot emphasize too strongly the critical need for increased af-
fordable housing for those with AIDS/HIV who are homeless and
PAGENO="0041"
37
perhaps with other health and behavioral issues. In the past this
issue has been dealt with mostly by community based organiza-
tions, private funders, city or State governments, but these re-
sources are nearing exhaustion. In my view, the Federal Govern-
ment must become a full partner in the response which can and
must be made on behalf of those with AIDS/HIV.
Thank you.
[The prepared statement of Patricia Sullivan can be found in the
appendix.]
Chairman GONZALEZ. Thank you.
May I say we are grateful for your prepared statement, and we
can offer the entire text of your prepared statement for the record.
You may wish to summarize and limit your oral testimony. We do
have two more panels following this one, and if it is possible, it
would be desirable.
Mr. Graham, before introducing you, I wanted to thank you for
what obviously has been a heroic job in this area. We had such dra-
matic and eloquent testimony testifying to your great help.
STATEMENT OF JIM GRAHAM, ADMINISTRATOR, WHITMAN-
WALKER CLINIC, WASHINGTON, DC.
Mr. GRAHAM. Thank you, Mr. Chairman. I very much appreciate
your compliment and the members of the committee. We commend
you for your consideration of the AIDS Housing Opportunity Act
today. We consider this to be a very important measure.
I will be brief. I very much appreciate your reference to John
Overrocker, who is a resident of our program who has spoken more
eloquently than I can about the impact of our program on the
people we are serving.
I do however just. want to spend the alloted time that I have to
underscore some key problems which we face as a local provider of
community based housing services.
I want to also note that today's testimony marks almost to the
day the fifth anniversary of the Whitman-Walker Clinic's housing
program. It was 5 years ago in late March, 1985, the first resident
moved into our first group home. It seems odd that we have been
around long enough to mark such a significant milestone. I must
say that in the early days of the epidemic we half-expected that
this all would be over in a few years and I think there is a continu-
ing hope generally held in America today that AIDS is going to be
a problem that we are somehow going to remedy very rapidly.
I think that those of us who are working in the field know that
that is just not the case.
This is at best a generational problem which will last through
my generation and undoubtedly will last through generations that
come after me.
The 5 year history of our housing services is one of which we are
very proud. It is a remarkable story yet it is not the story of a
grand vision, big budgets or larger-than-life heroes. It's really the
story of a community responding in crisis, at first with very little
help from the outside. It is the story of caring men and women
committed to ensuring that people with AIDS have the opportunity
to live out their lives with dignity.
PAGENO="0042"
38
Most importantly, it is the story of many small victories by
people themselves living with AIDS and what I finally wish to un-
derscore at this point is it is a story that has largely lacked or vir-
tually lacked any Federal funding whatsoever and I think the situ-
ation in the District of Columbia is replicated in virtually every
city in the United States with exceptions here and there where
Federal funds have been made available but generally speaking,
there has been very little Federal support for housing for people
with AIDS.
Some recent reports in the media have indicated, Mr. Chairman,
that the AIDS epidemic is somehow subsiding especially in the gay
and bisexual male population and while well-documented studies
evidencing just the opposite have also been published our fear is
that the public and our elected officials will somehow begin to be-
lieve that there is no longer a need for large efforts to battle AIDS.
In fact, there has never been a greater need than there is today.
Our figures show no decline. The populations increasingly affected
by HIV have few if any financial resources and as people with
AIDS live longer, their need for services multiplies.
Let me illustrate that. Of the over 700 people with AIDS man-
aged in our social work department last year, fully one-half had
monthly incomes of $500 or less at the time of our intake. Often
their economic situation deteriorates over the course of their ill-
ness. Many of the individuals who turn to our housing program
have no other alternative. These would be people otherwise who
would be homeless and in the streets. In some cases these people
have been deserted by families and lovers or they have virtually no
income. These are not individuals whose housing problems can be
solved with rent assistance programs.
For our residents these homes provide a great sense of security.
When they move in, they are guaranteed a home for life. These
residences relieve a great burden for individuals often struggling
for financial survival.
Now I have mentioned and others have discussed the group
home alternative. I want to also mention a second housing option
which we have in the District of Columbia, which is an interim
care facility which we opened in January, 1989, which for us was a
very significant local step in meeting the challenge of the needs of
people with AIDS. With a capacity of seven residents, this DC-li-
censed facility provides short-term interim care for individuals who
do not require hospitalization but are not well enough for inde-
pendent living.
Under our license we are able to provide IV therapy, administer
oxygen as well as a whole host of other drug therapies.
Unlike a nursing home or a hospice this residence is conceived as
a middle point in the illness. Too often we found the people with
AIDS were released from the hospital too early. They went home
unable to take adequate care of themselves and they were soon
back in the hospital.
In other cases people with AIDS were forced to remain in the
hospital far too long because there was nowhere else for them to
go.
With this new facility people with AIDS have an option, a place
to go to regain their strength with the home of returning to an in-
PAGENO="0043"
39
dependent living situation. This home partially filled a significant
gap in health care in the District of Columbia. As AIDS becomes a
long-term manageable illness people with AIDS tend to have a
series of ups and downs over the course of several years and this
residence helps them survive those low points.
One of the most noteworthy aspects of this project is the cost.
Unlike an average day in a typical hospital which can run $1,000
or more, the average cost per person per day in this facility is
$60-obviously a savings well in excess of $900 per day.
Our next, newest residence, which we will open in June with
money from the District of Columbia Commission of Public Health,
will be a house for women and their children with HIV, very simi-
lar I suspect to the house that we have had described that already
exists in San Francisco.
There will be, as already pointed out, a variety of complex issues
surrounding these families, not the least of which will be the prob-
lems relating to addictions.
I want to also mention our Tenants Assistance Program here in
the District of Columbia, Mr. Chairman, which I think in terms of
people with AIDS has for all practical purposes collapsed. There
are no new section 8 certificates available. There have been no sec-
tion 8 certificates available at least since late 1988. We note with
satisfaction that there are provisions of the bill which is before you
today which would provide dedicated section 8 certificates for
people with AIDS. We think this is a very important provision.
There certainly are a number of people with AIDS who we will be
able to keep in their own homes as a result of these certificates.
Let me mention just a word or two about the problems of sub-
stance abuse because another major issue facing us and every other
community based provider in the Nation is the problem of finding
a solution to the housing needs of individuals with active, active
substance abuse problems. Individuals with abuse problems are in-
eligible for our housing program at present because they are dis-
ruptive, obviously disruptive in a group home setting. Yet 15 per-
cent of all of our current social work intakes admit to active abuse
of illegal drugs. Of all the individuals currently on our social work
case load system we loosely estimate that 50 percent have active
alcohol or substance abuse problems, problems that HIV infection
greatly magnify and those previously in recovery often turn to al-
cohol and drugs when given an AIDS diagnosis yet that abusive be-
havior makes it infinitely more difficult to fight the virus and more
difficult for us as service providers to deliver effective support serv-
ices.
The solutions to housing these particular individuals are com-
plex. We have identified a two-tier solution that includes halfway
houses and turning point houses specifically for people with HIV
and AIDS. These halfway houses would provide homes for individ-
uals in recovery programs and the turning point houses for active
abusers trying to get motivated for recovery. While these homes do
exist in the community at large, they are crowded and most often
are unequipped and/or unwilling to deal with individuals with HIV
infection.
In conclusion, because of the very real needs we see every day in
trying to respond to the housing needs of people with HIV and
PAGENO="0044"
40
AIDS, we wholeheartedly support the AIDS Housing Opportunities
Act. This Act recognizes the importance of providing rent and utili-
ties assistance. As we have found over and over again, it proves
most cost efficient and helps maintain quality of life to keep indi-
viduals in their own homes for as long as possible. The bill also
wisely provides money to States and localities to fund permanent
new residences through nonprofits.
Throughout this epidemic, community-based organizations such
as the Whitman-Walker Clinic have proven their ability to provide
compassionate and empowering services at very reasonable costs.
The public-private partnership is a viable option and it is good to
see that it is recognized in this legislation.
Thank you, Mr. Chairman.
[The prepared statement of Jim Graham can be found in the ap-
pendix.]
Chairman GONZALEZ. Thank you, Mr. Graham for an excellent
statement, just chock full of good statistics that will be helpful to
us and your recommendations as well.
I am going to ask Mr. McDermott to introduce his constituent,
Mr. Bianchi.
Mr. MCDERMOTT. Mr. Chairman, it's a pleasure to introduce
Barry Bianchi, the President of the Board of Directors of the
Northwest AIDS Foundation. The Northwest AIDS Foundation is
an umbrella organization that has been very active and very effec-
tive in dealing with the AIDS crisis in the Seattle area.
They have also played a critical role in the construction of a
project called AIDS Housing of Washington, which is a 35-bed resi-
dence for people with AIDS. This is a model project and a first
class facility that really symbolizes the community's action neces-
sary to cope with this tragic epidemic.
Mr. Bianchi's commitment to the Northwest AIDS Foundation
goes back to 1985 when he became a member of the Board of Direc-
tors. He is employed by Branch Richard Anderson Company, where
he is the manager of the Energy Services Division and previously
worked for the city of Seattle and we welcome you to Washington,
D.C. Thank you for taking a 7 hour red-eye and coming to testify.
STATEMENT OF BARRY BIANCHI, PRESIDENT, BOARD OF
DIRECTORS, NORTHWEST AIDS FOUNDATION
Mr. BIANCHI. Thank you very much. Thank you, Mr. Chairman.
I, too, will be quite brief and summarize my written testimony,
which I would like to have as part of the record if possible.
Chairman GONZALEZ. Without objection, your written testimony
will be entered into the record.
Mr. BIANCHI. Thank you. The organization which I represent, the
Northwest AIDS Foundation, was founded in 1983 by a group of
doctors and leaders in the gay community to provide education,
money and services to people living with AIDS and those at in-
creased risk of HIV infection.
We have been involved with housing for persons with AIDS since
1985.
As a second wave city, one advantage Seattle has had over New
York, New Jersey and San Francisco is that we have been able to
PAGENO="0045"
41
learn from the first-wave cities and to have had some time to plan.
In Seattle housing for persons with AIDS is always combined with
health care and social service.
We use some basic guiding principles. First, we are committed to
providing housing which is flexible enough to meet the changing
needs of the clients. Next, we help persons with AIDS stay in their
own homes for as long as~ possible. Finally, we support clients in
the least restrictive setting for the maximum time possible.
The spectrum of facilities in Seattle is a well coordinated pro-
gram involving cooperative relationships with 15 different organi-
zations-churches, public, nonprofit, and private individuals and
corporations. Our model of housing service is unique in that it is
not only cost effective but it is humane. We are fortunate to have
been able to adopt a public health policy which not only looks at
costs but also addresses the best interest of the client.
During 1988 the Foundation was asked for housing assistance by
50 percent of the 540 persons living with AIDS in King County. In
1988 we were able to satisfy 85 percent of those requests but our
program is on the cusp. We have done well in providing services to
our constituency but we have many grave concerns about the
future.
Unless something changes soon we will only be able to help a
fraction of those in need.
By 1993 projections indicate there will be at least 2,552 persons
living with AIDS in Seattle/King County. By 1995 the numbers
will top 4,000. If only current resources are available, less than
one-quarter of those in need of housing will be served in 1995.
Without the partnership with the Federal Government which
this legislation proposes, more and more people with AIDS in Seat-
tle will be faced with the choice of expensive hospital beds or ho-
melessness.
Beyond the exponential growth in the number of persons with
AIDS, the changing face of the epidemic is also changing the need.
There are no housing options at all for some segments of the popu-
lation. Already we have a gap in housing facilities for IV drug
users who are actively using drugs. This is a significant unmet
need which will grow. It is estimated that 7 to 8 percent of the
12,000 IV drug users in King County are seropositive; 800-900
people could need this type of housing. No emergency housing
exists in Seattle for situations where a woman and a child both
need housing and supportive care. No housing exists for the dually
diagnosed.
People with AIDS have urgent and unique housing needs. When
a person with AIDS comes to us for help he has often just been dis-
charged from the hospital from an acute or chronic illness. He can
- no longer afford his current rent and he is seeking some sort of
emotional support in facing his own death. He is acutely aware
that less than a year from now he may need help getting out of
bed. He is unaware of what housing is available, let alone how to
access the system.
Some of our clients have been living on the street, where they
are susceptible to every disease. Some families are moving from
shelter to shelter because their name hasn't reached the top of the
waiting list or they do not have appropriate rental histories. Some
PAGENO="0046"
42
clients because of their history of drug and alcohol abuse are not
tolerated by any housing provider and cannot get into immediate
treatment. The housing challenge is obvious.
A successful housing program for persons with AIDS must pro-
vide counselling and referral, maintain a variety of housing op-
tions, be cost effective and humane. As Congressman McDermott
points out, placement of any person with AIDS into any form of
housing will require support services if it is to be effective. Place-
ment of the chronically ill must be swift and it must be monitored
as the needs of the client changes.
We have provided referral and counselling services since 1988
with funds from the Health Resources and Services Administration
but these monies will cease in September at the end of this fiscal
year. We have begun to receive some local funding but the number
of people seeking housing assistance has grown from 190 to over
600 this year. Local resources will not be enough to let us meet the
demand for these services. The proposed legislation would help do
so.
Congressman McDermott recognizes that persons with AIDS
have a spectrum of housing needs from emergency aid to help indi-
viduals remain in their own homes, emergency shelters to care for
the homeless, rental subsidies for those who can live independent-
ly, community residences for those who need some help, and more
intensive care for those who are severely ill.
In Seattle and King County we have tried to develop such op-
tions but the need is too large. Monies from the Federal Emergency
Management Assistance Program provided over 1,000 bed nights to
33 clients last year, yet over 200 of our clients faced homelessness
or eviction.
The city of Seattle through the block grant program provided 15
units of transitional housing for 1990, which will allow us to place
over 60 homeless individuals but the Federal Government has cut
this grant by 10 percent.
There are obvious gaps in the system.
This bill, H.R. 3423, recognizes the overwhelming demand for
permanent, independent housing and approaches the need creative-
ly.
Our three most requested programs are dependent upon the Se-
attle Housing Authority; transitional, federally subsidized perma-
nent, and section 8 certificates but these programs are full and the
waiting lists are growing longer. This bill would provide local hous-
ing authorities with the ability to rehabilitate multiunit dwellings
for persons with AIDS, a program already successfully used for the
homeless. It would also provide funding to local housing authorities
to provide section 8 certificates for persons with AIDS.
Congressman McDermott's bill would also provide funding for
community residences. We have had success with this system but
have seen that people reach a point where they need more care
than their housemates can provide. At that point they often return
to an acute care hospital which is more restrictive and expensive to
wait for placement in a nursing home or adult family home. Half
of the time they die waiting.
The Northwest AIDS Foundation supports this legislation and
applauds Congressman McDermott for its comprehensive scope.
PAGENO="0047"
43
The bill realistically assesses the housing needs of people with
AIDS and provides flexibility to create innovative programs. It uses
existing housing providers and it is completely cost effective while
ensuring the dignity of persons with AIDS.
We at the Northwest AIDS Foundation believe that the concepts
of H.R. 3423 are crucial for any comprehensive housing legislation.
People with AIDS have unique housing needs because of the nature
of their disease. It is timely to recognize people with HIV infection
as a constituency.
As the Congress begins to discuss H.R. 1180, the comprehensive
housing bill, Congressman McDermott has provided a vehicle to re-
flect the needs of people with AIDS.
I want to thank you for your time and I urge adoption of this
legislation.
Thank you.
[The prepared statement of Mr. Bianchi can be found in the ap-
pendix.]
Chairman GONZALEZ. Thank you.
I believe almost any question I had anticipated has been an-
swered by the testimony of the witnesses. It has been very full,
complete, very knowledgeable, and of course, most helpful to us.
We do intend to make this an integral part of the consideration
H.R. 1180.
Mr. McDermott.
Mr. MCDERMOTT. Thank you, Mr. Chairman.
I would simply like to ask a question I do not like to ever ask,
but I will ask it anyway.
When we wrote the bill, we put in everything we could think of
that met a niche in the market. There are problems at different
*stages.
If you had to choose which of these programs you see as being
the most critical one in terms of dealing with AIDS housing needs,
what area would you see as being most critical? I would ask the
panel.
I know you do not like to choose between which of your children
you love best, but nevertheless, we may be in a position, and I
would like to know, at least from professionals who are dealing on
a day-to-day basis with this, which part of it is the most difficult or
the most problematic for you.
Mr. GRAHAM. I would think the $100 million dedicated to the sec-
tion 8 certificates, in some ways, is the most compelling, because
having been through more than one situation-a number of situa-
tions where I have watched people give up their homes, where they
could have stayed there had they had one of these certificates, I
think leaves me thinking that is one of the most compelling situa-
tions, although I would agree with you. I would hate to have to
pick one over the other, but I suspect that section 8 is in many
cities throughout the United States right now, in terms of people
with HIV infection.
Ms. SHUBERT. If I can just respond with my New York hat on, it
is true that in some communities the section 8 certificates will not
be a significant factor, simply because the housing does not exist.
In New York City, we have already 10,000 homeless persons living
PAGENO="0048"
44
with HIV, and so, I think I would agree. I think that every part of
this bill is vital.
I think the funding for community residences is extremely im-
portant in a community like New York City and many other com-
munities we talked to in our survey, where affordable housing is
already stretched to the limit, and there is a need for the creation
of new housing alternatives.
Mr. BIANCHI. I also could not make that choice. I think one of
the issues for me-and this bill, I think, is very good-is that it
does recognize the continuum; does recognize that a person with
AIDS or HIV infection is not static. So, if a person has his own
home with a section 8 certificate, eventually that person could
become ill and require 24-hour daily care service. So, we are going
to find homeless people with HIV/AIDS who do not have homes
and that need to be placed in permanent housing as that moves
through, and I think the bill is comprehensive, because it does deal
with that continuum, and we need all of those pieces, quite frankly,
to satisfy it.
Ms. SULLIVAN. I would just say, too, that we need all the pieces,
the continuum of care. To isolate one might result in homelessness
in other areas, and they hinge upon each other in providing the
type of services that are needed.
Mr. MCDERMOTT. Thank you all for coming.
Thank you, Mr. Chairman.
Chairman GONZALEZ. Mr. Wylie, the ranking minority Member
of the full committee has arrived. I neglected and I apologize that I
had been advised that he would be delayed. He had to meet with
some constituents who travelled many miles to be here.
At this point, I would like to recognize Mr. Hubbard.
Mr. HUBBARD. Thank you very much, Mr. Chairman.
I welcome the witnesses, as they have previously been welcomed.
We appreciate your testimony. This is, indeed, an important sub-
ject.
I congratulate you, Mr. Chairman, upon holding this hearing,
and it is beneficial to those of us who serve on the Housing sub-
committee and the Banking Committee, and hopefully, as a result
of this hearing and legislation, this can be very helpful in the near
future to the housing needs for those who have AIDS.
Thank you for the opportunity, Mr. Chairman.
Chairman GONZALEZ. Well, thank you, Mr. Hubbard. I appreciate
your presence.
Mr. Wylie, I do not know-and I did not receive any informa-
tion-if you had any opening remarks that you wanted to submit
for the record at that point of the record.
Mr. WYLIE. I do have some opening remarks, and I would be glad
to submit them for the record. I think this is an important hearing.
I do apologize for the lateness of my arrival, but this has been one
of those mornings, and I did indicate to the Chairman earlier that I
might be delayed. We are addressing a subject that is very timely,
and I think that as this subcommittee nears the time for the
markup of the omnibus housing legislation, it is a dimension that
must be taken into account.
So, again, Mr. Chairman, I think you have done us a service by
having the hearings today and asking these witnesses to appear
PAGENO="0049"
45
and to state their case for a problem which is increasing in our so-
ciety.
Thank you very much.
Chairman GONZALEZ. Well, thank you very much, Sir, and if you
wish, we can have your opening statement at the very outset of the
hearings in the transcript.
Mr. WYLIE. That would be fine.
[The prepared statement of Mr. Wylie can be found in the appen-
dix.] -
Chairman GONZALEZ. Well, actually, I do not have words with
which to thank you. You have really come forth under quick
notice.
I think we ought to recognize the excellent staff work here that
also put the hearings together. As you know, we have Mr. Frank
DeStefano, who has just assumed the directorship of the staff of the
subcommittee since January, and then this hearing, I believe,
mostly, was Mr. John Valencia's doings, but we have also been
most fortunate in having Ms. Nancy Libson, also relatively new,
but one who has just simply amazed me, and I just would not be
able to thank her enough for the excellent high standards of work
that I have received.
In fact, in the 10 years, almost, that I have been Chairman of
this subcommittee, I have never been as well-prepared for hearings
as Ms. Libson has made possible.
Over on the Minority side, well, of course, I have been neglectful.
I had notes from your staff, Mr. Wylie, and Mr. Ventrone is the
Staff Director on the Minority side, and his able assistance has
been absolutely vital, as Mr. Wylie himself.
We have worked, very fortunately, on a most friendly, reciprocal,
and kindly cooperative spirit. It has just been, for me, a tremen-
dous experience and fortunate enough to have great leaders like
Mr. Wylie, who has a very special interest in housing matters.
Well, thank you very much. There is no need to keep you any
longer, unless you have something you wish to add to the discus-
sion.
The hour is getting a little late. We intend to go right through
the noontime and would like to summon forth the next panel-Mr.
Robert Greenwald, manager of the Public Policy Legal and Hous-
ing Programs, AIDS Action Committee from Boston; Mr. Harry
Thomas, executive director of the Seattle Housing Authority; Ms.
Pam Anderson, program manager, Residential Services, AIDS
Project of Los Angeles; and Mr. Roland Westerlund, housing coordi-
nator, Minnesota AIDS Project from Minneapolis, MN.
Thank you very much for your complete cooperation and your
ability to be with us, again, as I said a little bit earlier, on rather
quick notice.
We will recognize Mr. Greenwald first, and then when we get to
Mr. Thomas, I am going to ask Mr. McDermott again to introduce
him.
Let me also say that I wanted to thank you for your prepared
text as you have given us. It was given to us with an opportunity to
examine them and evaluate them. We can present it as you gave
them to us, into the record. You may proceed by summarizing, or
whichever way you deem best.
PAGENO="0050"
46
Mr. Greenwald.
STATEMENT OF ROBERT GREENWALD, MANAGER, PUBLIC
POLICY-LEGAL AND HOUSING PROGRAMS, AIDS ACTION COM-
MITTEE, BOSTON
Mr. GREENWALD. Good afternoon, Mr. Chairman, members of the
committee.
My name is Robert Greenwald. I am an attorney. I manage
Public Policy-Legal and Housing Programs for the AIDS Action
Committee, and I am Clinical director of the AIDS Law Clinic at
Harvard University, which is a free law clinic that we run for
people with HIV infection.
I am here today to talk about the issues of AIDS and housing
and to express the strong support of the AIDS Action Committee of
the Commonwealth of Massachusetts for the AIDS Housing Oppor-
tunities Act.
It is an honor to be here, one that, given my agency's very re-
stricted budget, is not often possible. My presence here today re-
flects the importance that we place on this issue and on this piece
of legislation.
The basic premise of my testimony today is this-the homeless of
tomorrow are being created by today's failure to provide adequate
housing options for thousands of people with AIDS. I offer a few
statistics to highlight the housing crisis that we are experiencing
within the crisis of AIDS.
It is estimate that, nationwide, at least 20,000 people with AIDS
are homeless. An estimate 10 to 15 percent of homeless people are
infected with HIV, although the rate is much higher in some cities.
In Boston, it is estimated that 30 percent of our homeless people
are infected with HIV.
In many States, over 20 percent of people with AIDS are in hos-
pitals because they are homeless. In Massachusetts, it is estimated
that over 30 percent of people with AIDS are in acute-care hospi-
tals because they have no community-based or residential alterna-
tives available to them. We are seeing Medicaid costs soar, and
much of the reason is due to the fact that we have no residential
alternatives available. People either live independently in their
apartments if they can afford them, on the streets if they cannot,
and if not, in acute-care settings.
People living with AIDS who are not literally on the streets are
often a step away from homelessness. In Massachusetts, as in
Washington, D.C., from the last panel, I learned, the average
person with AIDS is on either Social Security insurance or Social
Security disability insurance. The average income of a person with
AIDS in the Commonwealth of Massachusetts is approximately
$525 a month. That is in a city where rental costs for a one-bed-
room apartment are over $500.
Clearly, what we are seeing, historically-Congressman Frank
had asked the question about AIDS-related discrimination in hous-
ing. Historically, as an attorney, I can tell you that we did-we
used to see a lot of AIDS-related discrimination. At this point, land-
lords know, for example, that it is illegal, based on the Fair Hous-
ing Practices Act and a few other laws, to discriminate against
PAGENO="0051"
47
people with AIDS. What they have learned instead is if you sit
back and wait 4, 5, or 6 months, you will be able to evict a person
with AIDS, and most likely, it is due to the fact of inability to pay
rent.
The AIDS Action Committee of Massachusetts has over 250 cli-
ents-that is 25 percent of our caseload-who are either homeless
or in eminent danger of homelessness. Due to both Federal and
State housing subsidy cutbacks, lack of access to existing programs,
and projected AIDS caseloads, the number of clients in desperate
need of housing is expected to climb to over 1,000 by the end of
1990.
I have submitted written testimony, so I am really, today, going
to very much summarize my testimony and, actually, add a few
other points.
I have been asked today to talk about some of the successes that
we have had in terms of AIDS housing development. I have to tell
you that that is sort of a short discussion, particularly in terms of
Federal support.
We have had, historically, a difficult time working with HUD.
HUD has had a policy of excluding persons with AIDS and ARC
from access to section 8, McKinney Act, and section 202 programs.
There was a discussion before, on the last panel, about 202, and I
would like to clarify it.
It is true that, historically, HUD denied that people with AIDS
met the categorization of handicapped. After that point, HUD said
that people with AIDS are not automatically eligible, even though
some people are handicapped, because others, unless they have
some other underlying physical handicap, do not meet the criteria.
The third reason that HUD gave for denial was saying that their
definition of handicapped includes a clause that says a person must
be handicapped for a long, indeterminant period of time. HUD ba-
sically concluded that people with AIDS do not live long enough to
qualify for HUD 202 housing.
It is true that some of that has changed. Now HUD is saying
that people with AIDS may be eligible for section 202. In other
words, they are not categorically denying access to 202 programs.
However, HUD is still saying that you cannot develop handi-
capped housing under 202 exclusively for people with AIDS. That
leaves organizations like my organization, an AIDS service organi-
zation, with the choice of saying we are going to build handicapped
housing, and perhaps 10 to 20 percent of the people in the housing
that we developed can be people with AIDS, or AIDS community
development corporations, AIDS housing developers, etcetera. That
is an unrealistic option, and so, in effect, we are basically being
denied access to developing housing for people with AIDS through
those programs.
I would like to talk a little bit about some of the successes that
we have had in Massachusetts. In Massachusetts, as in most States,
the length of already-established section 8 waiting lists will exclude
newly-diagnosed people with AIDS from access to the program for
the next 4 or 5 years. Often, waiting lists far exceed this length of
time.
At the same time, people with AIDS represent one of the fastest
growing groups of homeless individuals in the State and in the
PAGENO="0052"
48
country. Living in a shelter or on the streets is not ideal for
anyone. For people with AIDS, it can be deadly.
In recognition of this growing crisis and of the particular needs
of people with AIDS, in my State, the Executive Office of Commu-
nities and Development agreed to set aside 20 rental subsidy certif-
icates for individuals with AIDS. AIDS Action Committee and
other AIDS service organizations, in turn, agreed to provide sup-
port services to these clients to guarantee their successful place-
ment in tenancy.
What I can tell you is in the city of Boston, for example, 33 per-
cent of people that receive section 8 certificates are successful in
placing them. That is partly due to the fact that many landlords
will not accept them, partly due to the fact of how high rental costs
are and how inaccessible apartments are.
For AIDS Action clients, we have a 90-percent success rate of
placing section 8 certificates once we receive them. We have a case-
management system. We have a housing advocate that is funded
through the Health Resource Service Administration, who works
with clients to help find apartments. Once people are in place, we
have meal programs, transportation programs, case management,
practical home-based support, etcetera.
The EOCD, Executive Office of Communities and Development,
undertook the set-aside program in the hope that it would encour-
age other local housing authorities to follow suit and, thus, quickly
create a network of available housing for people with AIDS. Thus
far, there are 55 proposed set-aside units within the State of Massa-
chusetts.
The problem, however, has been this-the only ones that have
gone online are the ones that are funded through State-subsidized
housing programs. The EOCD had suggested 20 set-asides through
the section 8 HUD program, and HUD has rejected our proposal.
So, again, that we have the set-aside proposal has been incredibly
helpful. It has housed many people in the State. Basically, the way
the set-aside proposal works is a person moves into an apartment
with a certificate. When the person moves out or dies, the certifi-
cate comes back into the pool. So, it is a constant pool of section 8
certifications for our clients, but again, as I said, we have not been
able to use HUD-funded certificates for this program.
The second thing we have done in the State is work out the
tenant-selection procedures. Basically, HUD has requirements, cri-
teria, in terms of evaluating who shall have priority in housing.
One of the biggest problems that we have is. top priority is, of
course, granted to people that are homeless. In most housing au-
thorities, the way it~works is you have to be evicted and living in a
shelter in order to have top priority. A person, for example, that is
paying 75 or 80 percent of their income in rent and is clearly one
step away from homelessness does not have any priority under
most preference categories.
The situation is, thus, that a person has to go through the entire
eviction process. You also cannot, if you are behind on the rent,
move out, because that does not qualify you. You have to stay and
go through the entire eviction process and move into a shelter in
order to get top priority.
PAGENO="0053"
49
In our State, the State realized that this was a totally unaccept-
able situation for most people and, particularly, for people with
AIDS. Having a requirement that a person with AIDS has to go
through an entire eviction procedure and then move into a shelter,
which, in many instances, ended up having people in acute hospital
settings, was a complete waste of time, money, and lives.
Instead, what we have done in Massachusetts right now is adopt-
ed a new tenant-selection procedure. It basically deals with people
with serious medical conditions that can establish that continuing
to live in their present apartment is essential to their health and
safety. If a person can establish that and also establish that they
have been living in an apartment for a 9-month period of time,
they will be given equal priority to a person that is homeless.
So, in fact, it is one of the first programs in the country that I
know of that is addressing the issue of homeless prevention. My
line is basically this-if we do not start dealing with the issue of
homeless prevention, we are never going to be able to stop the new
pool of homeless people created, particularly within the AIDS pop-
ulation.
Finally, the third program that we have tried to implement in
the State is using project-based assistance, which is also a section 8
program. Project-based assistance is different than your traditional
section 8 program in that it basically is a subsidy that goes with
the apartment or the building. It is. an apartment that is placed in
the building and stays there for 15 years, and eligible clients are
moved in and out.
In Massachusetts last year, we received 195 project-based certifi-
cates for the entire State. The Executive Office of Communities
and Development has agreed to set aside 65 of these project-based
assistance certificates to try to stimulate the development of sup-
ported housing options for people with AIDS.
What we are doing is going to community-development corpora-
tions, for example, and saying we have these certificates. When you
are developing this new, 20-unit building for handicapped individ-
uals, if you set aside 10 of them for people with AIDS, we will give
you the project-based certificates to help you fund and finance your
development.
What we are hoping is that we can use these certificates as lever-
age to stimulate the development of housing for people with AIDS.
Now, there are a couple of issues that come up, and we have had
to write to HUD. The concept of the program is approved by HUD,
but at this point, we are now trying to work out a few details,
which I just thought I would bring up as issues that constantly
come up.
What is unclear right now is if we can target specific popula-
tions. HUD is saying to us they will let us do the project-based as-
sistance for people with AIDS, but they are uncomfortable with it.
We need .to send a strong message, which is part of what this Act
does, that it is OK, given the emergency situation, to target specific
populations.
The second issue that is coming up is on tenant-selection proce-
dures. HUD traditionally mandates that it has to go in chronologi-
cal order. If you are running a congregate living situation, you
cannot necessarily say that a person is an acceptable tenant just
PAGENO="0054"
50
based on the fact that they are number one on the waiting list. We
need to work with HUD to try to develop lists of criteria that can
be used for determining eligibility for supervised and congregate
facilities.
A final point is, basically, one of the projects that had applied for
the project-based assistance was on the grounds of a medical insti-
tution. In fact, it was a perfect situation. They were going to devel-
op 10 units of independent housing with project-based assistance
and then be able to use the hospital facility when a person had an
acute episode. It now turns out that HUD will not allow us to use
those certificates on medical institutions.
There is basically a whole list of points that I think really need
to be looked at in terms of working with HUD and trying to tap
into already-existing programs, and basically, in the Common-
wealth, we are really trying to do that, and that is what I was here
to tell about, and it is outlined in my testimony.
Thank you.
[The prepared statement of Mr. Greenwald can be found in the
appendix.]
Chairman GONZALEZ. Thank you very much.
Mr. Thomas, I will ask Mr. McDermott to introduce you.
Mr. MCDERMOTT. Mr. Chairman, I would like, again, to introduce
somebody from Seattle. Harry Thomas is the Executive Director of
the Seattle Housing Authority. He was formerly the Assistant to
the Mayor. He has been in public service for his entire career, and
he is also a former resident of public housing. So, he comes to us
with a special background in understanding housing.
Mr. Thomas has responded quickly to the need for affordable
housing for people with AIDS in Seattle, and I commend him for
both his efficiency and his compassion in dealing with this, and
Harry, I am also glad to see you. I know it is a long trip, but I ap-
preciate your coming back and waiting to testify.
STATEMENT OF HARRY THOMAS, EXECUTIVE DIRECTOR,
SEATTLE HOUSING AUTHORITY
Mr. THOMAS. Thank you very much, Chairman Gonzalez and
Members of the subcommittee. I'm really pleased to have been in-
vited here to share the Seattle Housing Authority's experience in
providing affordable housing opportunities for persons who are
living with AIDS and to offer testimony and support of H.R. 3423,
the comprehensive housing bill that is sponsored by Representative
McDermott, Representative Pelosi, and Representative Schumer.
Today I'd like to talk to you about the challenges that we have
faced in housing persons living with AIDS, describe what has
worked for us, and explain why based on our experience we sup-
port Congressman McDermott's bill.
Some of the persons who are living with AIDS who apply for
public housing have always been unemployed and low income.
These may be persons who have contacted the AIDS virus through
using shared needles. This group is more familiar with the system
and comes in to apply for housing as soon as they learn that they
h11v~ AIDS.
PAGENO="0055"
51
The other group we see, however, is made up of middle class
people who have always managed on their own. They continue to
manage on their own after they have become infected with the
AIDS virus and they do not come to see us until their condition has
so deteriorated that they have lost their jobs, lost their homes, and
they need help immediately. This group is generally unable to wait
for a public housing unit.
Most of the first group we are able to place in public housing be-
cause they come to us early enough in the progression of the dis-
ease that they have the time to outlast the waiting list. The second
group needs help much faster, and it is this group that cannot be
helped in our conventional public housing units.
We first started housing persons with AIDS in about 1986 and at
that time we faced two obstacles, the first, as you already heard,
HUD was reluctant to acknowledge that persons who are living
with AIDS are disabled under the Federal definition for public
housing and section VIII programs. That definition, and I quote,
"...a person who is unable to engage in any substantial gainful ac-
tivity by reason of medically determined physical or mental im-
pairment which can be expected to result in death." Now, with
that language they still found that people were not qualified.
We got good cooperation from our local office and good coopera-
tion from the Region 10 HUD office and posed the question to the
Central HUD office. It took forever, and in the end we made our
own determination that, people fit the regulation and we began to
admit persons with AIDS about a year before we actually received
approval from HUD to do that.
The second obstacle we faced was the reluctance of our staff to
work with this population. This reluctance, of course, was rooted in
ignorance and misunderstanding. To address it we have had a total
of four training sessions, with about a year gap in between them,
which all employees have been required to attend. These training
sessions have been provided by the Seattle King County Public
Health Department and they have provided excellent up-to-date in-
formation about the disease and how it's transmitted.
We have seen this training pay off in increased acceptance and
compassion for persons living with AIDS, both as residents and as
employees of the Housing Authority. Our policy is to avoid discrim-
ination against persons living with AIDS. We do not tell the staff
which residents have AIDS, consequently, they're not treated any
differently because of their condition.
We did expect, by the way, that the reaction of the other resi-
dents, toward persons with AIDS, would be a major obstacle. As it
turns out, it has not been a major obstacle. In general, the people
living in public housing have been very accepting of one another.
The Seattle Housing Authority provides housing for persons
living with AIDS in a variety of ways. First, as I mentioned, they
are living in our public housing communities, all of our communi-
ties, including the highrises, garden communities, and our scat-
tered site program as well.
Second, through the section VIII program we originally set aside
twenty certificates for persons with terminal illness, and most of
those went to persons with AIDS.
PAGENO="0056"
52
Third, as you've heard, we rent units to the Northwest AIDS
Foundation to use for transitional housing. In our experience the
section VIII certificates are the most useful tool that we find for
assisting persons with AIDS.
The idea of a set aside of section VIII certificates came to us
originally from the Northwest AIDS Foundation which requested
that we do that for their program and for persons who are living
with AIDS. HUD was reluctant to approve this request and sug-
gested that instead we set aside units for persons who are terminal-
ly ill. What this meant was that people who had AIDS and others
with terminal illness could ~be helped immediately as long as we
had set asidecertificates left, but of course these filled immediately
and the program was used at its capacity.
Presently, HUD will no longer allow us to set aside section VIII
certificates for terminally ill persons. We believe that this unfortu-
nate. The~ certificate program has been beneficial to persons who
are ::living with AIDS. As you've heard. before, often because it
means that they can stay in unit that they're already in. They can
stay close to their services, and they can stay close to their support.
Congressman McDermott's bill would give housing authorities
section VIII certificates for persons living with AIDS and from our
experience we believe this would better enable. housing authorities
to be of assistance. There is also a need for transitional housing for
persons living with AIDS. In general, these are persons who are
coming out of the hospital, who have lost their permanent housing,
and they need a place to stay until permanent housing can be
found. Under the Federal regulations we as a housing authority
cannot provide transitional housing. In Seattle the housing author-
ity does own several locally funded buildings downtown and in one
of these we rent 13 units to the Northwest AIDS Foundation and
they in turn, place the tenants in them and give them the impor-
~tant services that they need. This program is actually funded by
the city of Seattle.
Our reading of Congressman McDermott's bill is that it will pro-
vide funding to expand these transitional housing opportunities
and ensure the delivery of necessary services. Based on our ~experi-
ences these are both very important elements in an overall AIDS
housing opportunities act. We, as. a housing authority, have cer-
tainly benefited a great deal by our cooperation with the North-
west AIDS Foundation and the Seattle King County Department of
Public Health.
The Northwest AIDS Foundation has shared freely of their expe-
rience and helped us help them. The support services they offer are
essential in enabling persons with AIDS to live in public housing or
to live in private apartments. The Seattle King County Department
of Public Health has consistently provided us with excellent train-
ing and up-to-date information on the progress of the disease.
I thank you for your time. I do appreciate the opportunity to
share the experiences of at least one public housing authority in
this country and I encourage you to adopt this legislation.
Thank you.
Mr. GONZALEZ. Well, thank you, Mr. Thomas. Thank you for suc-
cinctly summarizing the main points of your excellent prepared
PAGENO="0057"
53
statement. I wanted to thank you for that again, and, of course,
your prepared statement will appear following your oral testimony.
[The prepared statement of Harry Thomas can be found in the
appendix.]
Mr. GONZALEZ. Ms. Anderson, welcome aboard from L.A.
Ms. ANDERSON. Thank you, it's cold out here.
Mr. GONZALEZ. I see you're not from San Francisco, otherwise I'd
have Ms. Pelosi-you're from Southern California and Mr. Torres
isn't here to introduce you.
Ms. ANDERSON. The only part of California is southern Califor-
nia.
STATEMENT OF PAM ANDERSON, PROGRAM MANAGER,
RESIDENTIAL SERVICES, AIDS PROJECT OF LOS ANGELES
Ms. ANDERSON. I would like to say good afternoon, Mr. Chair-
man, and members of the subcommittee, my name is Pam Ander-
son and I am the Program Manager for Residential Services for
AIDS Project Los Angeles.
I would like to express my gratitude for this opportunity to ad-
dress the subcommittee on the housing needs of people who are
living with AIDS. I consider this not only an honor but a tremen-
dous responsibility. It is my charge to humanize the statistics and
impart to you the same sense of urgency I feel. In the amount of
time it takes for me to deliver my testimony here to you this morn-
ing 13 will have died, 70 percent of those having an income that
will not support adequate housing. These individuals will have
spent the last 2 years of their lives struggling with not only emo-
tional and physical debilitation brought on by the disease, but also
with obtaining housing, food, medical care and treatment as well
as public benefits.
By the time I return to Los Angeles 186 people will have died.
There is no time to waste. We know one of the most critical needs
for people with AIDS is affordable, humane housing options, and
I'm going to also condense my testimony, but I do want to share
with you the experience we've had personally with HUD. The Fed-
eral Government's response to this critical need has been to deny
access to funding. I have first hand knowledge that this is true.
AIDS Project Los Angeles has a 14-bed long-term facility for indi-
viduals who are not soley affected with the AIDS virus but have a
secondary diagnosis of mental illness and in most cases a third di-
agnosis of substance abuse. I might add this is the only 14-bed in
Los Angeles County for this population.
In August of 1988 we applied to the State of California for a
$60,000 grant to make the facility handicap accessible. $30,000 was
to come from State funds and the other $30,000 was to come from
HUD monies designated as McKinney's Act Permanent Housing
for the Handicapped Homeless.
The State of California approved our proposal and forwarded it
to HUD. On November 22, 1988 we received notification that our
request for $30,000 had been rejected. The rejection stated that we
had an ineligible population, the clients would be AIDS patients.
The decision was contrary to several Federal laws, the Rehabilita-
tion Act of 1973, the Civil Rights Restoration Act of 1988, and the
PAGENO="0058"
54
Fair Housing Act of 1988. It is also important to note that the ap-
plications specified no less than nine times that the population to
be served would be dually diagnoses as having mental disabilities
in addition to AIDS. People with mental disabilities have been de-
termined to be eligible populations~ in. each of the nine other appli-
cations submitted.
Since November of 1988 letters have flown back and forth, ap-
peals have been made and 80 percent of the people~ that were in
the facility at that time have died. The last transmittal was re-
ceived from' HUD in January of 1989 and in our opinion HUD has
been totally unresponsive. In this `process we have been told many
interesting things by staffers at HUD. The most telling was the
fact that had our clients had a "mental or physical handicap prior
to the AIDS diagnosis our application would probably have been
okayed. All of this has been over $30,000 ~to make' a facility handi-
cap accessible for handicapped people.
The other act as to HUD funding in Los Angeles is the Rent As-
sistance Certificate Program and the waiting list-the time on the
waiting list precludes our clients from participation.
I was going to go further into the different parts of the continu-
um but Ms. Sullivan covered that very adequately and so I would
like to talk a little about long-term housing.
Many people with AIDS may need long-term residential support
for one or more of the following reasons. Their financial resources
have been completely depleted and their income is $600 per month
or less. Their physical condition has deteriorated to the point that
living on their is hazardous. They may have additional issues, sub-
stance abuse, dementia, requiring a more structured long-term
living situation.
There are options proposed in Los Angeles County to meet long-
term housing needs. The first option is low income rental units.
This would appear to be the most cost-effective humane remedy to
the financial crisis PWA's find themselves facing. The plan calls
for acquisition and rehabilitation of apartment buildings by AIDS
service agencies able to provide supportive services to the tenant.
These services would include case management referrals to in-
home nursing care and on-site support groups. There would be
access to referrals for legal, transportation and mental health serv-
ices. The tenants would be charged 30 percent of their income and
rent `subsidy funds would have to be developed for those who had
no income.
A major concern raised with this approach is the capital outlay
needed to purchase and renovate such projects. Further concern is
about the ongoing operational expenses because rent subsidy
money is not currently available. The positive aspects of the sup-
port and socialization approach would afford makes it one of the
most favorable options.
I would also like to address long-term treatment for those with
multiple diagnoses. There's a substantial population of persons
with AIDS who have a second diagnosis which is at least an equal
factor in their long-term residential needs, and that a substance
problem or a psychiatric diagnosis which may or may not be relat-
ed to the HIV disease. While it is sometimes possible to place such
`people in independent living situations through the methods de-
PAGENO="0059"
55
scribed above, in a great many cases specialized long-term care is
the only effective option.
I might add, too, in Los Angeles County there is not one bed
available in a skilled nursing facility for any of our folks, unless
you have the ability to pay through private insurance. There is a
critical shortage of residential drug treatment and mental health
programs across the board. AIDS clearly reinforces and exacerbates
the need for more programs of these types. Those that do exist
need to be made accessible to PWAs, and require training in the
special needs of PWAs, just as in the case with shelter programs.
Some programs have been developed which specialize in long-term
care of multiple diagnoses PWAs, they have been quite successful.
The most successful programs of this type have been targeted di-
rectly and narrowly at this population. In Los Angeles, AIDS
Project Los Angeles has created Our House-I run this part of
APLA-which the staff has been trained in-depth to handle mental
health and substance abuse issues while working on site. For such
programs to be effective, staff must be highly trained in the spe-
cialized areas of substance abuse, psychiatric problems, including
HIV-related .dementia. Skilled case management must be available
on site.
The approach suggested for long-term housing of special needs
populations is to follow the model of the community based residen-
tial programs and mental health programs. The difficulty with this
approach is there is no licensing category, so we've been caught in
California between-the county boiler plate language states that
we either must be licensed or away from licensing and there is no
licensing category. Without licensing there is also no provision for
reimbursement.
AIDS Project Los Angeles has just assisted in developing a licens-
ing category to meet the need, and we've just had this submitted
this last month.
To give you an idea, a brief idea of what the suggestion is, the
county plan for Los Angeles County, Los Angeles will need to de-
velop 240 additional shelter beds. Los Angeles will need to develop
funding for some level of temporary or permanent rent subsidy for
approximately 3,500 people per year. Los Angeles will need to de-
velop 500 new units of low cost long-term housing, a percentage of
which should be designated as clean and sober living environments
for individuals in recovery. Los Angeles will need to develop 42
beds per year for the next 3 years for those with multiple diagno-
sis, and we will need an additional 150 hospice beds.
The bill H.R. 3423, the AIDS Housing Opportunities Act, is most
comprehensive in addressing the needs of the continuum. Further,
it clarifies access to HUD programs stating that persons living with
AIDS should be considered disabled or handicapped. I would hope
every effort is being made to see that this bill is approved.
In conclusion, victims with AIDS in Los Angeles are living and
dying in Los Angeles County are living and dying in public hospital
wards or on the streets because there are very few options. The al-
ternative residential facilities are full and have waiting lists such
as the Our House facility. Our current waiting list has 23.
We have the only facility for dual and multiple-diagnosed indi-
viduals in Los Angeles County, and, as I stated, this represents
PAGENO="0060"
56
only 14 beds. The cost of a hospital bed in Los Angeles Country
ranges from $700 to $1200 per day. The alternatives listed through-
out my testimony would range from $20 to $200 a day tops.
In the very beginning of my tenure with APLA, I had an experi-
ence that continues to fuel the sense of urgency I feel. I was sitting
in the living room of Our House with a client named Joey. Joey
had just realized that the HIV virus was, indeed, going to take his
life.
Joey had received his diagnosis only one short month after suc-
cessfully completing a drug program. Joey looked at me, and tears
started streaming down his face. I put my arms around him, and
his body shook with the pain of the realization that he was going to
die.
His comment to me was, "I'm so sorry I'm not going to live long
enough to make my brother proud of me. It's so unfair for him. I
don't want to die." I realize that there is not a thing I could say to
Joey to lessen his pain and suffering. There were only things that I
could do to make the journey he was facing a little less frightening
and a little more comfortable and conducive to maintaining the
dignity that he had struggled so hard to achieve.
That's my message to you today. There is no more to be said;
there is only lots more to be done. Thank you.
[The prepared statement of Pam Anderson can be found in the
appendix.]
Chairman GONZALEZ. Thank you, Ms. Anderson.
Mr. Westerlund.
STATEMENT OF ROLAND WESTERLUND, HOUSING
COORDINATOR, MINNESOTA AIDS PROJECT
Mr. WESTERLUND. My name is Roland Westerlund, and I am the
Housing Coordinator for the Minnesota AIDS Project. I want to
thank you, Mr. Chairman and members of the committee, for pro-
viding us with the opportunity to speak to you today.
First, I would like to express my support for the people who have
appeared on the previous panels. The people who appeared on the
first panel accurately reflected the kinds of concerns that I hear
day after day, week after week, as I speak with the people who are
residents in the Minnesota AIDS Project Housing Program.
There has been a lot of good testimony about the complexities of
the housing situation with which people with AIDS are confronted,
and there have been some technical discussions about those. I'm
not going to focus on those today.
It was suggested that I talk a little about the problems of hous-
ing people with AIDS in rural areas, but before I do that, let me
briefly describe the Minnesota AIDS Project. Housing Program, and
then I want to talk about the situation of housing people in rural
areas.
The Minnesota AIDS Project Housing Program has four parts to
it. We try to assess the housing needs for people with AIDS
throughout the State of Minnesota. Secondly, we assist in develop-
ing needed housing for people with AIDS. This last year, for exam-
ple, we put some emphasis on the creation of adult foster care fa-
cilities for people with AIDS in Minneapolis and St. Paul.
PAGENO="0061"
57
In addition to that, we operate a housing information and refer-
ral service for people with AIDS and for people who assist people
with AIDS. Certainly, by exception, we operate housing for people
with AIDS. We believe that it is the responsibility not only of the
gay community and the AIDS community, but the broader commu-
nity to provide housing for people who have AIDS.
The housing that we provide in Minneapolis is transitional hous-
ing for people who are capable of living independently and who are
homeless. We operate six homes, they are four-bedroom homes, and
last year, we had 51 people passing through our facilities in Minne-
apolis, St. Paul.
I listened to Mr. Dannemeyer earlier, and it was interesting to
hear his perception of the housing problems with people with
AIDS. You talked about hospices. I guess one of the things we
should remember is that, in reality, there's a great amount of life
between the time one becomes HIV infected and the time that one
might succumb to the illness.
Much of this life that people endure is very intensive, and it's
very traumatic. One of the major problems that people are con-
fronted with during this period of time is the problem with hous-
ing.
Our case managers at the Minnesota AIDS Project report that
about 85 percent of our clients at some time during the course of
their illness will find themselves having at least one major housing
crisis.
Now, when we look at housing, I think we should try to under-
stand that we're dealing with four major types of housing. We are
dealing with an independent housing living system, and we should
try to keep people living independently as long as we can. It's for
that reason that I would support H.R. 3423, which would help a
great deal in providing section 8 certificates and in providing addi-
tional assistance for keeping people living independently.
But beyond that, we have to be sure that we can provide support-
ive living systems, such as transitional housing, and such as half-
way houses for people who are coming out of chemical dependency
programs, coming out of prisons, and so on.
In St. Paul-Minneapolis, we find that the lack of halfway houses
that are gay sensitive and AIDS sensitive is a major impediment to
the performance of a successful housing program, and we need
more of that.
There is a third housing system that we can't forget, and that is
the residential treatment system. This includes facilities for people
who are chemically dependent, people who are mentally retarded,
people who are mentally ill, and who need at least some short-term
care to develop living skills to live independently.
Fourthly, we have the institutional housing system, and we have
to pay attention to the kind of housing facilities that are available
for people in prisons. We have to pay attention to the quality of
nursing homes and the quality of health care in the residential en-
vironment in hospitals.
With that in mind, let me talk a little bit about our rural hous-
ing issues. My feeling is that there are major impediments to
people with AIDS living independently in rural areas. For one
thing, the quality of the housing stock in rural areas is often poor.
PAGENO="0062"
58
I would like to suggest that the Federal Government take an in-
terest in putting some priority in providing public support for the
timely improvement and the rehabilitation of housing units that
are occupied by HIV-infected persons, especially if there is some
hope that these people can live independently in that existing
housing with appropriately supportive services.
As I look across the country side in Minnesota, I find that from
county to county, from region to region of the State, the quality
and quantity of in-home supportive services available for HIV-in-
fected persons varies markedly. I would like to suggest that the
Federal Government take an interest in trying to assure that we
can get some improvements in home care services and raise those
levels of effectiveness in areas for the weak.
Now, we find that people who are HIV infected sometimes are
forced to move for financial reasons. I would suggest that if a
dwelling unit in which an HIV-infected person lives is safe, sound,
sanitary and not inordinately expensive, that such a dwelling unit
should be declared federally subsidizable and continue to be so as
long as an HIV-infected person is capable of living independently
in such a unit.
I would also like to suggest that some Federal resources be allo-
cated to AIDS education for the housing community.
Mr. Thomas spoke of his experience and the need for education,
and the Minneapolis housing authority has spoken to us recently
about the need for such education, and the Minnesota AIDS Project
is now working on a program to assist the Minneapolis housing au-
thority in such education.
Now, with respect to rural areas and support of living systems,
there is a real need for transitional housing. There is a need for
halfway housing in many rural parts of the State. I would like to
suggest that the Federal Government encourage the States to look
at each State and encourage other States to help collections of
counties, that is groups of counties, to provide halfway houses and
the various kinds of transitional housing units in less densely popu-
lated areas.
There is a need, certainly, for chemical dependency treatment
units throughout the State. People are coming to Minneapolis-St.
Paul from 300 miles away to get those kinds of services, and they
would prefer to live closer to home. I think there's a way of doing
that by regionalizing or sub-state regionalizing some of these facili-
ties.
Now, in a number of housing programs, and it's been described
here earlier, we find that people find themselves impoverished.
Someone may go into a facility and find that his social security is
taken away from him except for cigarette money, $47 a month.
This takes away independent decisionmaking from HIV-infected
people. I would suggest that maybe we find a way of limiting the
amount of a person's income that must be used for various kinds of
housing programs and limiting it at about 30 percent.
With respect to institutional treatment, one of the problems you
have in outlying areas is the lack of specialists, and if you can en-
courage people in the medical profession, in the caring professions,
to work in rural areas, that would be helpful in providing services
to people in rural communities.
PAGENO="0063"
59
Also, one of the things you might want to think about is that we
have a lot of underutilized hospitals in rur~al parts of the country,
and there are certain kinds of programs, like chemical dependency
treatment programs, that we might, on a sub-state regional basis,
put into some of those underutilized hospitals.
Those are some suggestions that I want to make about providing
some housing services for people with AIDS. I'd like to conclude
simply by saying the aims of our housing and related supportive
service system should be to enable HIV-infected persons to live in-
dependently as long possible; to assure that each of the major hous-
ing systems provide the housing and supportive services that are
needed in a timely and an effective way. At the moment that's not
occurring. And we need to minimize the need of people to move
into restricted and costly institutionalized housing programs.
For example, we, in our transitional housing program, have
taken people out of nursing homes. We had a case where we took a
man out of a nursing home, he performed in our housing success-
fully for 8 months, and we saved $10,500 of taxpayers' money with
that move.
We need to assure that housing that's provided is safe, sound, af-
fordable, sanitary and appropriate. I don't think that shelters are
appropriate for HIV-infected people. They expose HIV-infected
people to fatal illnesses, and we really need to be very certain that
we can find alternatives for HIV-infected people. We need to assure
that housing and related support service costs will not impoverish
HIV-infected persons.
I think that H.R. 3423 is really a good beginning in working
toward the achievement of at least some of these aims.
Thank you.
[The prepared statement of Roland Westerlund can be found in
the appendix.]
Chairman GONZALEZ. Thank you very much.
Mr. Greenwald, it was disappointing to hear of the experiences
you had with HUD in the Boston area. Could you digress a little
bit on the project-based certification program?
Mr. GREENWALD. Sure.
Chairman GONZALEZ. Who does that operate? What's the basis?
Mr. GREENWALD. Basically, the way it works, every public hous-
ing authority has the authority to basically set aside 15 percent of
their portfolio for what's called project-based assistance. Project-
based assistance is using the same certificate, but instead of turn-
ing it into a client-based certificate, which means that it's given to
an individual client that can then go and place it in any apart-
ment, it gives the certificate to the landlord and basically says,
"For 15 years-it's up to 15 years-that certificate stays in that
unit," and it stays there, and what you do is you move eligible
people into the units.
What we're saying is, by using project-based assistance and get-
ting landlords and developers, basically they can go to banks, for
example, and get financing because they have a 15-year guaranteed
stream of income, you can develop supported housing.
A lot of people here have talked about the advantages of using
section 8, and part of it is its flexibility. The advantages of using
project-based assistance is that you can develop support programs.
PAGENO="0064"
60
An AIDS service organization like mine, for example, if we can get
a landlord to taI4~'10 of those units within a building, we can start
providing incredible amounts of support services in those buildings.
It's very difficult to do that with travelling certificates that individ-
uals move in with, and when they die, goes back to the housing au-
thority.
So, basically, project-based assistance is 15-year subsidies given to
landlords, and they work very similarly to the traditional section 8
programs in that individuals are required to pay 25 to 30 percent of
their income and the State pays the rest.
What we are seeing actually is that it is an incredible incentive
and leverage for us to have these certificates. We have literally
gone to nonprofit developers~ who, 2 years ago when we tried to
talk to them about doing AIDS housing development, had no inter-
est in talking to us, and now are calling us and saying "We hear
you have project-based assistance."
They're difficult to get, but the advantages by doing this, first of
all, on the one hand, we're doing some mixed type housing, which I
am very supportive of, also, by doing it, we're sort of educating all
the housing developers in the State as to the needs of AIDS hous-
ing. So, we're hoping that aside from just the specific units that we
can get with the certificates, that it will also leverage an incredible
amount of education for furthering AIDS housing development
needs.
Chairman GONZALEZ. Well, thank you very much.
Mr. GREENWALD. I can also submit more information to you on
project-based assistance, if you would like.
Chairman GONZALEZ. I would appreciate that very much.
Mr. GREENWALD. If you look to the back of my testimony, there
are a number of attachments, and one of them is a 2-page outline
put out by the Executive Office of Communities and Development
on project-based assistance.
Chairman GONZALEZ. Well, if you can give us some local statisti-
cal account. In other words, by the time you get down to the
Boston area, what is the regional office certifying?
Mr. GREENWALD. OK.
Mr. GONZALEZ. The other question had to do with the statement
you made with respect to HUD's decisions on congregate facilities.
I'm trying to remember exactly how you have reported it.
Mr. GREENWALD. I think what I was talking about, in using the
project base certificates one of the problems that we have right
now is we're trying to develop, as I said, congregate and supervised
residentiai~. programs. HUD is saying that might be OK, but we're
going to still force you to do tenant selection procedure on a chron-
ological basis, which basically means first come/first serve. What
we're saying is if you're building a congregate living situation and
you have four people living there and there's one available unit
within this congregate facility, we have to have more control than
just chronological order that we can develop criteria which will be
objective criteria but would mean that a person was, you know, in
treatments or in other types of programs, etc., in order to be eligi-
ble to move in.
So, what really we're saying is that if we're going-the basic con-
cept is that we need to work very closely with HUD, I believe, to be
PAGENO="0065"
61
creative and innovative in terms of the applicability of many of
these programs, and there's really a whole list of issues, this was
just one of them, in terms of the use of programs like Project Based
Assistance.
Mr. GONZALEZ. Thank you very much.
Mr. Westerlund, I think you had an excellent suggestion there, I
have examined rather cursorily H.R. 3423 and I don't think we
have a specific reference to rural housing. So we'll make sure that
we're looking out for that and thanks for your observations and
pointing out that we have an equally severe problem in the rural
areas, both with respect to housing as well as AIDS.
Mr. Wylie.
Mr. WYLIE. Thank you very much, Mr. Chairman. I will have to
say that I find this to be a very difficult issue at best and I'm not
ready to say that I have any of the answers to the problems that
you talk about here this morning. I think the bill raises at least as
many questions as it answers in my mind.
Mr. Westerlund, you said that HIV-infected people should live in-
dependently as long as possible, and then Mr. Greenwald talked in
terms of favoring a mixed type of housing. We had a panel ~here
yesterday of public housing authorities who talked in terms of
having difficulty with disabled persons mixed in housing for the el-
derly. They mentioned that some of the mentally ill come into the
housing units and forget to take their medicine. They're very dis-
ruptive, the elderly in the units become frightened and so they
have had some difficulty with mixing in this instance.
I have a letter here :from the National Association of Housing
and Redevelopment officials. They said we applaud your sensitive-
ness to the needs of AIDS~victirns and yourTin±tiative to try to. craft
an appropriate Federal response. We are ~concerned, however, by
the proposal to the extent it relies on medical condition, rather
than rent paying ability, as a basis for housing assistance.
So, I would address this to you, Mr. Greenwald, that this is not a
legal question, it's rather a philosophical one. Under this bill assist-
ance will be provided to house AIDS victims in public housing and
section VIII projects. Will AIDS people be intermingled with
V others, for example with the elderly? DO you perceive that they'll
get along? Could the difference in the lifestyles cause friction? Are
we invoking or going in the direction of providing another type
challenge here that hasn't been envisioned?
Mr. GREENWALD. We have actually had a lot of success in our
elder handicap units, both on the public housing side and on the
private, nonprofit subsidized housing developments. What we have
seen is, and for example there is a community development corpo-
ration in Boston that is now set aside four units in an elder handi-
capped development. We've done a lot of AIDS education. It's true
that many of the elders initially had fears about living with people
with AIDS and as you said people have historically-elders have
had at times a hard time or difficult time living with physically
disabled, the mixed. It's actually worked out incredibly well in the
context of AIDS.
AIDS is very much the disease of an episodic nature. What hap-
pens is when people with AIDS are healthy very often they can
contribute a lot of a mixed use development and what we have
27-986 0 - 90 - 3
PAGENO="0066"
62
found is that the people with AIDS living in these developments
have contributed and helped elders. On the other hand, when
people with AIDS get sick, there's also been a role for elders to
play in working with people with AIDS.
I actually have some testimony from other conferences that I've
been at from private, nonprofit developers, housing managers, that
talk about the success of mixed-use housing, and our experience
with it has been very successful.
Mr. WYLIE. Thank you, Mr. Chairman. Thank you, Mr. Green-
wald.
Mr. WESTERLUND. Mr. Chairman, Mr. Wylie, I can confirm what
Mr. Greenwald says. In Minneapolis we have had similar experi-
ences where people with AIDS have been in highrise units with el-
derly people and some of the people who have been MAP clients
have provided services for the residents and how there's been a rec-
iprocity between them. There have been some fears from time to
time, but it can work. It can work with-in terms of people with
AIDS, for example, who may have certain kinds of handicaps, with
proper case management and proper supportive services brought
into the housing unit, people can live for very long periods of time
independently or close to being independent.
Mr. WYLIE. I sense that it might be a difficult challenge for us,
but your sense is that it might not be as difficult maybe as I per-
ceive it.
Mr. GREENWALD. It's almost important to remember that particu-
larly the 3,000 section VIII certificates, most of those, as far as I
understand it, will be traveling certificates that place individuals
in apartments and communities, not necessarily in units within
subsidized housing developments, although I'm sure some people
will also be eligible for those.
Mr. WYLIE. OK, thank you.
Thank you, Mr. Chairman.
Mr. GONZALEZ. Congressman McDermott.
Mr. MCDERMOTT. Mr. Chairman.
First of all, Ms. Anderson, I hope that you will submit to us the
letter of denial that you mentioned from HUD. All of us I think on
the committee would like to have a copy of anything in writing
that any of you have had in experiences with HUD.
Mr. GREENWALD. Mine are attached to my testimony.
Mr. MCDERMOTT. Good.
Mr. GREENWALD. The 202 and the section VIII.
Mr. MCDERMOTT. OK, thank you.
Secondly, I would like to ask you, Mr. Thomas, what do you do
with your waiting list? How do you deal with people on your wait-
ing list in terms of AIDS?
Mr. THOMAS. Well, the short answer is that we close our waiting
list. We have accumulated so many people on our section VIII wait-
ing list that we simply can't manage it, so it's almost always
closed. Every couple of years we will open it for maybe a week or
two and in that period of time will get another two or three thou-
sand people and close it up again. So, as a practical matter there is
no waiting list in the city of Seattle for people with AIDS or other
disabilities.
PAGENO="0067"
63
Mr. MCDERMOTT. So, a system of set-asides that allow you to
bump people up would make some sense to you? You'd be willing
to support that?
Mr. THOMAS. Well, it was used by us very effectively as long as
HUD would permit us to do that because if you can't even get on
the waiting list and if you have a terminal illness, particularly one
that progresses as quickly as AIDS, then that program is just of no
value to you at all, you'd never live to see the benefit.
Mr. MCDERMOTT. Is that essentially the experience in other
cities? With the waiting list and the section VIII kinds of things?
Mr. GREENWALD. Yes, it's very similar. I almost might add that
even though HUD originally approved those Seattle 10 at this
point, they're not even willing to contemplate the concept of set-
asides, it's important to realize that the set-asides that they ap-
proved for Seattle are based on local preference, for again of the
portfolio that a housing authority has of certificates, 10 percent
can be used for local reference. Those are much more limited and
they're much more restricted. The only way that HUD approved
the set aside for Seattle was through local preference. So, in other
words, HUD did not say we will allow through our portfolio, or
through the certificates that we have control of, to let you do this
preference. You can do it through local initiative.
Mr. MCDERMOTT. So, it only happened because the local housing
authority was aggressive?
Mr. GREENWALD. Exactly, it was a HUD based initiative.
Mr. MCDERMOTT. Is the same true in Los Angeles and Minneapo-
lis St. Paul?
Ms. ANDERSON. Well, we just had a window opening in L.A. City,
Los Angeles, there were 10,000 applications, 700 will be chosen by a
lottery system, and its like-we're looking at 3, 4 years down the
line--
Mr. WESTERLUND. That's true in the Twin Cities, also. We have
had more success with the building based section VIII certificates
and moving people in there with some facility.
Mr. MCDERMOTT. Have any of you had any success with your
housing authorities trying to get them to use the local preference?
Have you even tried to get them to use that in Boston?
Mr. GREENWALD. We've been fortunate in Massachusetts because
the Executive Office of Communities and Development have been
so supportive of our program. They have done it instead on a 707
Program whichis the State's version of section VIII and the Boston
Housing Authority has 25 of those set aside certificates.
The Cambridge Housing Authority actually is using the section
VIII certificates and is operating the program despite the fact that
they do not have HUD approval and basically are in a letter writ-
ing campaign with HUD for the past 2½ years. It's unclear-if
they have to-the reason I can say that here, Congresswoman
Pelosi, is that they are-if necessary they will use the local prefer-
ence. I mean, what they're arguing right now is saying they don't
want to use the local preference if possible.
Mr. MCDERMOTT. Thank you all very much for your good testimo-
ny.
Mr. VENTO [chairman]. Congresswoman Pelosi.
PAGENO="0068"
64
Ms. PEL0sI. I, too, want to thank the witnesses for their good tes-
timony and for all, that they do to help, and I hope that with the
passage of this legislation we will be a help to you as you have
been to so many people in need. Thank you.
Mr. VENTO. Well, thank you, and let me extend a special wel-
come to my friend from Minnesota, Roland Westerlund. I hadn't
been in attendance and I apologize, but I have read some of the tes-
timony.
I will be brief because I know there are witnesses that have been
waiting and the chairman has said that while he was gone I
shouldn't pass any bills, so I won't, we won't move this out that
quickly, but we're going to work on it. But I just wanted to com-
ment that I think that this points up sort of the convergence of a
lot of social issues with housing issues, and we face this constantly.
We see it happening in terms of select populations and problems
with the aging and the extension of congregate housing services
programs and just a whole host of different things that come to-
gether.
I asked the staff about the definition problems pointed out by
Mr. Greenwald's testimony. The definition problems that exist in
the law apparently have precluded the consideration of any type of
projects that would specialize in serving someone that has AIDS.
But there are real concerns here that arise because obviously you
would not give preference to anyone that was HIV-positive, would
you, Mr. Greenwald, that would not be necessary, would it?
Mr. GREENWALD. I'm not sure I understand the question.
Mr. VENTO. You would not give preference in a housing system
for anyone that's HIV-positive, would you?
Mr. GREENWALD. Do you mean to extend the program beyond
just the AIDS and ARC definitions?
Mr. VENTO. Well, would you give for instance a preference in
housing to anyone that's HIV positive?
Mr. GREENWALD. I'm sorry, I'm still really confused as to--
Mr. VENTO. Well, would you extend beyond-in other words, the
intent here in your proposal is not to provide any preference in
terms of housing or the specialized units for anyone that was
simply HIV positive?
Mr. GREENWALD. Oh, so you are saying extended? No, we are
talking about here people with AIDS and ARC as far as I'm con-
cerned. I'm not necessarily talking about gaining access to special
needs housing for simply HIV infected individuals. I am not asking
for that.
Mr. VENTO. Now did you look at all the social ramifications of
this in terms of having, for instance, housing utilized by someone
that has AIDS, a person with AIDS? PWA, I guess, is the term--
Mr. GREENWALD. Have I looked at the social issues? We present-
ly--
Mr. VENTO. What I'm asking you is what the reaction is in terms
of the social--
Mr. GREENWALD. Well, for example--
Mr. VENTO. Of having all people with AIDS living in a unit of
that type.
Mr. GREENWALD. My AIDS service organization, for example,
right now runs two community residences exclusively for people
PAGENO="0069"
65
with AIDS and ARC. It certainly takes a certain amount of com-
munity education before you can open the residences, but they're
actually very successful and fit into the community.
Mr. VENTO. OK, so that was the question, in other words what
would be the preference here, Roland, Mr. Westerlund?
Mr. WESTERLUND. To what?
Mr. VENTO. What would be the preference in terms of housing?
Mr. WESTERLUND. I'm not sure that I understand the quest;ion.
Mr. VENTO. As compared to having exclusive housing or having
housing which is integrated?
Mr. WESTERLUND. That's integrated? Our policy is to, as far as
independent living is concerned, to try to assure that people have a
choice of living where they want to live, and, you know, we run six
houses for HIV infected people, but those houses are integrated
into a community.
Mr. VENTO. What kind of demand do we face in Minnesota in
terms of numbers that are available today, housing units for per-
sons with AIDS as opposed to the need?
Mr. WESTERLIJND. Well, in terms of transitional housing for
homeless people who are HIV infected, we served 51 people last
year, we assume that we're going to have to serve at least 75 in the
Twin Cities area alone.
Mr. VENTO. And so we're short 25 units right now? Are you
saying we're short 25 units?
Mr. WESTERLUND. Well, no, I'm not saying-I think where we're
short is not so much in standard housing units as in special-in
Minneapolis St. Paul as in half way houses for people who are
chemically dependent, people who are coming through the correc-
tional system and moving back into the community, and we need
some support in reintegrating into the community again. There we
have some problems. We have a shortage, I think we have a short-
age of adult foster care beds in the Twin Cities area also. We have
just opened two new facilities and they're full and we have a wait-
ing list already.
Mr. VENTO. Is the response different from Seattle, Mr. Thomas?
Would the response to that question be different for Seattle?
Mr. THOMAS. Well, we've had experiences with all areas. We're
supporting units that are entirely occupied by persons with AIDS.
As I tried to explain in my earlier testimony, persons with AIDS
have, blended very very well into our total public housing commu-
nity, the large garden complexes, the highrises, the scattered site
program. They're persons very much like any other persons with a
specialized disability and a special set of needs that make them
particularly vulnerable.
Mr. VENTO. Because of the waiting list phenomena you'd have to
actually place these people or bring them to a special position on
the waiting list, is that correct, in terms of being eligible for 202?
Mr. THOMAS. I can't speak to 202, but for the section VIII pro-
gram, in order to meet their needs as a practical matter, if you
don't do something special a program simply isn't available to
them because they don't live long enough to outlast the waiting
list.
Mr. VENTO. So, that is a special case, that's if you had to do it if
you had waiting list for 202 as well, right?
PAGENO="0070"
66
Mr. THOMAS. Yes.
Mr. VENTO. And so there wouldn't-that wouldn't result in hous-
ing in Seattle then being completely utilized by people with AIDS
necessarily, would it?
Mr. THOMAS. Well, in Seattle what we have is a large number of
homeless people, a large number of people who need subsidized and
specialized housing in a variety of ways and not nearly enough re-
sources to meet them.
Mr. VENTO. Do you have some ideas about structuring this list?
It seems to me we have prioritized a number of different categories
of individuals. I think the most fundamental one is lack of income
or that they have a threat of loss or no housing and so forth, so the
first criteria, is that correct, we've prioritized that list into making
some of the priorities nonmèaningful in terms of availability or
who we should serve?
Mr. THOMAS. The relative lack of resource compared to the need
has made almost any kind of prioritization that you do a very very
difficult process to implement at the local level, and that's what we
face daily, having units that number 5, ten, 15, and persons on
waiting lists of various kinds numbering several thousand. That's
the problem that we face locally.
Mr. VENTO. OK, well, I'm trying to establish some of this because
as we get to writing legislation or modifying the overall housing
bill I think these questions become the questions that we will be
asked to-you know, we could make a change in the law and it
could make no difference in fact in terms of prioritization. I com-
mend my colleague for his special legislation that deals with some
of the special needs, whether or not we can swing appropriations.
We've had this big emphasis on research monies around here but
that has not dealt with the day to day problems. It's hoping every-
one can dodge the bullet, but clearly there are many that have not,
and that has to be dealt with.
I have no further questions. Mr. McDermott, do you have further
questions?
If not, thank you very much, I believe that concludes our ques-
tioning. Thank you, and we'll ask the next panel now to come
forth.
The Reverend Virgil will be testifying for Peter Smith, so if he'd
take a position at the table along with Barbara Watkins, from
Dallas, Texas, and Jim Davis, a Representative, the Housing Com-
mittee for AIDS Coalition to Unleash Power, New York, and Jean
McGuire.
And we thank you for your patience, as we have progressed
through the list of witnesses today.
I think copies of the testimony are about to be delivered to most
of the Members that are present. So I would like you to, recogniz-
ing the fact that we will have that in hand to read, and it will be
made part of the record in its entirety, without objection, as will
additional statements that are sent in in a timely fashion, I
assume, we would like you to try and summarize your statements
as best you can within about 5 minutes. If it takes a minute longer,
so be it. But I think that would be helpful to the proceedings of the
subcommittee at this point, if you would.
PAGENO="0071"
67
So welcome to each of you. And we have Reverend Virgil. Please
proceed, Reverend.
STATEMENT OF REVEREND RICHARD~ VIRGIL, ON' J3EHALF OF
PETER P. SMITH, PRESIDENT OF THE PARTNERSHIP FOR THE
HOMELESS, INC., NEW YORK
Reverend VIRGIL. Thank you very much. I do want to state why
Mr. Peter Smith is not here. He very much wanted to testify today.
He is in New ~York~City,~:opening; :on~behaif of the' Partnership, the
first congregation-based, transitional, supportivehousing facility.
The Mayor is there,. sort of launching the program, so Mr. Smith
found that he had to be there and that he could not attend here.
He has~asked, and I would like~ to present, I think I can do it in
about 6 minutes, the remarks that he had':prepared for this after-
noon.
Mr. Chairman, Members of the Congress, today you consider the
matter of rapidly growing homelessness among people with AIDS
and related illnesses and the~ course which this Nation should take
in attempting to meet a crisis which it has too long ignored and
now struggles to address without a sufficient commitment or re-
sources, or apparently, even a complete realization of the full con-
sequences of its continued failures in this regard.
Last year, the Partnership issued the first, and to date only, com-
prehensive report on homelessness and AIDS in New York City,
which I hare shared with your staff. Based on the detailed and sup-
ported estimates contained in that report, updated by further infor-
mation developed by the New York City AIDS Task Force issued in
June, using data from the New York State AIMS survey and the
SPARCS discharge database, we can now estimate that there are at
least 8-to-11,000 homeless PWAs in New York City. Homeless
PWAs are now, in fact, the fastest-growing segment of the home-
less population in this city.
To meet this huge need, our city, State, and Federal bureaucra-
cies together have managed to provide little more than 200 appro-
priate supportive housing units as we meet here today, as against
the projected need, through 1991, of 5,160 supportive housing ac-
commodations in New York alone. This, of course, excludes both
long-term institutional care, such as provided by health-related fa-
cilities and skilled nursing homes, and the over 700 SROs currently
being used by New York for PWA homeless, which even the city
administration agrees are mostly inappropriate.
Indeed, so acute is this gathering crisis and so inept our govern-
mental response to date, that we have projected that by the end of
1993, there may be as many as 30,000 homeless PWAs and depend-
ents in New York City alone, resulting in a possible paralysis of
our hospital and health care system, with unmanageable deficits
for many of our hospitals.
To start getting a handle on this situation before we are entirely
overwhelmed, the New York AIDS Coalition, which represents the!"
substantial universe of community-based AIDS service, education,
and advocacy groups in New York City, has formulated detailed
funding proposals to develop programs for both supportive housing
and homelessness.
PAGENO="0072"
68
Briefly summarized, those proposals call for the creation and op-
eration, by the end of June, 1991, of 2,240 supportive housing units
in various proven models, including community residences, the al-
location of up to 1,500 city-owned and Housing Authority units
from normal annual vacancies to be used in CBO scattered-site
apartment programs, and the initiation of a major Capital Develop-
ment Program to put a minimum of an additional 2,000 supportive
housing units for PWA homeless and near-homeless in a fast-
tracked development pipeline, to be operational by July 1992.
These combined proposals carry the substantial price tag of over
$150 million for the coming fiscal year alone. It is obvious to
anyone at all familiar with the projected budget deficits for both
New York City and State that this need will not be met unless
there is substantial assistance from the Federal Government,
almost none of which is currently available.
The national picture is at least as grim. In our recently-issued
46-city survey, all but eight responding cities and localities report
that homelessness among people living with AIDS and related con-
dition is increasing, and a full 38 project further increases this
year. Only one smaller city reported no PWAs among its homeless.
Over 40 percent of the survey participants report that the number
of homeless PWAs in their cities and localities are in the moderate-
to-substantial range.
In sum, our survey findings clearly demonstrate that PWAs are
an increasing, and in many cases, substantial segment of the home-*
less population in the vast majority of the cities and localities sur-
veyed. Growing homelessness among PWAs is by no means a prob-
lem restricted only to the major cities with the largest numbers of
reported AIDS cases.
While we normally resist offering numerical estimates of the
homeless because of the difficulty of actual counts and lack of sci-
entifically-verifiable baseline data, in this instance we fell it impor-
tant to provide some idea of the proportions of this heretofore-ig-
nored phenomenon. By correlating much of the data and many of
the assumptions used in our New York City estimates with data
provided by the U.S. Centers for Disease Control and the trends re-
vealed in our national survey, we are able to estimate that there
are now 28-to-32,000 homeless PWAs nationally, with an additional
10-to-11,000 children and other dependents who are also homeless.
Based upon the current average lengths of stay of PWAs in exist-
ing supportive housing models, utilization rates and variation in
unit sizes, as well as recent studies indicating that about 86 percent
of homeless PWAs can be adequately served by some level of sup-
portive housing, as opposed to nursing home or long-term institu-
tional facilities, we estimate that over 16,000 supportive housing
units are needed now, just to adequately serve the current national
homeless PWA population and their dependents.
As best as we can determine from presently available informa-
tion, however, there are now less than 1,000 appropriate supportive
housing units for PWAs in operation across the entire country,
and, with only a few exceptions, very little in the development
stage. Indeed, only four cities in our survey reported firm plans or
commitments to provide adequate PWA supportive housing pro-
grams, and a full 61 percent reported nothing at all, even in the
PAGENO="0073"
69
planning stages, to meet the needs of their growing numbers of
PWA homeless.
The projections for the future are even more ominous. Using cur-
rent estimates of HIV seropositives nationally and applying the
best available information on the current progression of the illness,
as well as percentages of PWAs who will need supportive housing
assistance in order to avoid homelessness, we project that by 1995
there may be as many of 101,000 homeless PWAs and dependents
nationally, with a range of 67,500 to 135~00O. A table containing
more detailed information as to how we arrived at these projec-
tions is attached to the written testimony. To meet this need, we
estimate that at lets 48,400 supportive housing accommodations of
all models will be required by 1995, at a minimum.
In addition to the specter of tens of thousands of homeless PWAs
having to struggle to exist, and in many case expire, in inappropri-
ate mass shelter settings, and in the nation's streets and transpor-
tation systems, many are unable to be discharged, because they
have no homes or supportive housing to go to. In many cities, this
is contributing to serious patient gridlock, and huge hospital defi-
cits. And even more bracing is the risk that the rapidly increasing
number of homeless PWAs could well reduce much of the health
care delivery system to a standstill in many of the nation's cities
and localities.
Faced with these stark possibilities, the June, 1988 report of the
Presidential Commission on the HIV Epidemic urged HUD and
other Federal agencies to become substantially involved in meeting
the unique supportive housing needs of homeless PWAs. Apparent-
ly, the Commission's message fell on deaf ears. Over 21 months
later, nothing related to these PWA supportive housing recommen-
dations has been forthcoming from either the White House or any
of its Federal agencies.
The HOPE initiative announced last November by the President,
in fact, offers very little hope and no specific funding programs to
address the needs of homeless PWAs.
The first ray of hope to appear on the Federal scene is the AIDS
Housing Opportunities Act, H.R. 3423, which you consider today,
and which would provide $580 million nationally over 2 years,
through HUD, to fund the entire array of supportive housing
models and assistance for homeless PWAs.
We would take this opportunity to respectfully suggest that, as
that Act winds its way through the legislative process, a provision
be added which would make FHA mortgage insurance available to
enhance the development of Community Residences and supportive
SRO housing for homeless PWAs provided under the Act.
The growing numbers of homeless struggling to live with AIDS
and related conditions is now clearly a problem of national dimen-
sions. To continue to ignore it is to invite national catastrophe. The
AIDS Housing Opportunities Act is the first and currently the best,
hope to begin to address this need before ti overwhelms us. It is by
no means the total solution. But it will light a candle whose rays
will begin to dispel the gathering darkness which threatens to en-
velope many of our nation's cities. We strongly urge the House to
place it among the nation's highest budget and programmatic pri-
orities.
PAGENO="0074"
70
Thank you very much.
[The prepared statement of Peter P. Smith can be found in the
appendix.]
Mr. VENTO. Thank you, Reverend Virgil. We have Ms. Watkins.
If you could try and summarize, it would be helpful.
STATEMENT OF BARBARA L. WATKINS, VICE PRESIDENT, PARK-
LAND MEMORIAL HOSPITAL, DALLAS, TX, ON BEHALF OF THE
AMERICAN HOSPITAL ASSOCIATION
Ms.~ WATKINS. Good afternoon. Mr. Chairman and members of
the committee, I am Barbara L. Watkins, and I am vice president
of Parkland Memorial Hospital in Dallas. I am here on behalf of
the American Hospital Association, AHA, and its nearly 5,500 in-
stitutional members. We appreciate the opportunity to testify in
support of House Bill 3423, the AIDS Housing Opportunity Act.
Representatives McDermott, Pelosi, and Schumer are to be com-
mended for their efforts to create a flexible solution to the increas-
ing problems of homelessness among persons with AIDS. You know
what this bill will provide.
Since the onset of the AIDS crisis in the early 1980s, hospitals
have played a leading role in treating AIDS by providing acute
care, developing specialized AIDS outpatient services, and coordi-
nating post-discharge care. All too often, services required by
chronically-ill PWAs are not available in the community, and pa-
tients must remain in acute care hospitals long after they could
have been discharged, an arrangement that is neither cost-effective
nor is it in the best interest of the patient. This legislation will
help alleviate the shortage of the most basic "service" of all. And
that is housing.
You know the magnitude of the problem. But what I want you to
know is that AIDS presents major challenges to the health care
system, because it is a complex condition that is difficult to treat.
AIDS slowly destroys the human immune system, rendering PWAs
susceptible to a series of opportunistic infections and rare cancers.
Each infection can require extensive treatment, and long hospital-
izations are not infrequent, some resulting in extended intensive
care. Moreover, serious complication, such as blindness, dementia,
incontinence, and oxygen dependence can occur. In many cases,
PWAs become totally unable to care for themselves, sometimes
living for extended periods in dependent conditions.
Fortunately, there have been significant improvements in the
prognosis and quality of life for persons affected with AIDS or HIV
since this crisis first appeared in 1980. PWAs now live an average
of 22 months after diagnosis, compared to only 10 months in 1983.
When this first surfaced in Dallas Texas in 1981, within the first
year, 60 percent of the individuals diagnosed with AIDS had ex-
pired. Now, it is approximately 30 percent.
HIV infection is a chronic illness that requires early care that
will continue for the rest of the patient's life. This care includes
expensive tests and drugs, access to outpatient services, occasional
acute care, and after the disease progresses to an AIDS diagnosis,
hospital, home health care, long-term care, or hospice care, as well
as a variety of psychosocial services.
PAGENO="0075"
71
But progress in treating HIV presents, of course, challenges. The
sparse network of community-based care for PWAs that exists in
most areas must now expand to serve persons with earlier stages of
HIV infection. Such an expansion will require not only adjust-
ments in the health care delivery system, but also adjustments to
bolster social~ support systems, including housing.
Since 1981, the central role of hospitals in delivering care to
PWAs has changed. Early on, hospitals provided acute care and ar-
ranged for post-discharge services, where they were available.
Often, the hospitals took the lead in putting together special co-
ordinated packages of services with a continuum of care for the
PWA. But as the AIDS caseload increased, hospitals have depended
increasingly on networks of community-based organizations, such
as those that have testified here today, and local government agen-
cies, to share the responsibility of providing care.
A full range of services is important, because AIDS is an episodic
illness. A PWA may need acute care 1 week, home nursing visits
the next, regular outpatient clinic visits for several months after
that. Many patients require custodial care, or "assisted" living situ-
ations, which often help with the daily chores of living, but provide
no formal treatment, except for occasional nursing visits.
But many of the community services are in short supply for all
patients, and in particularly short supply for PWAs. Moreover,
even when services such as home care and others that I have men-
tioned are available, PWAs require a residence. And our experi-
ence at Parkland, like most other hospitals, is that caring for
PWAs and those in need of housing is almost the most difficult
social service there is to provide.
Because of our concern about the availability of community-
based services, AHA's Society for Hospital Social Work Directors
collaborated with the National Center for Social Policy and Prac-
tice on a 1988 study related to the problem of AIDS. Three hundred
randomly-selected hospital social workers were asked about their
discharge planning experiences. They were concerned about the
availability of community-based services.
The 111 responding social work directors indicated that they
found all types of services for PWAs to be less available than for
other types of patients. This was particularly true of any service
that required living space, whether a nursing home, hospice, or an
alternative group living facility. For 66 percent of the respondents,
the communities in which they served that included housing for
PWAs, was judged to be inadequate, while, for non-AIDS patients,
housing was judged inadequate in only 40 percent of the communi-
ties. I have a copy of that report, that I would like to~leave with
the committee, entitled "Beyond The Hospital Door."
Most distressing, as you know, is the lack of availability of com-
munity services in those areas with high AIDS incidence. You have
heard this fact as it relates to New York. But in Dallas, we have
found out that 15 percent of the patients in hospitals are homeless.
And we estimate that between 30 and 50 percent of those infected
with HIV are also homeless.
Without access to an alternative level of care, patients frequently
must remain in a hospital longer than is necessary.
PAGENO="0076"
72
I know you have the information. But it is important for you to
know that in addition to those individuals we have talked about,
we would like to see, as I have stated, the bill expanded to provide
a demonstration grant, if you will, to be able to provide services to
women and to children who are affected with AIDS.
You may have heard the Surgeon General this morning on the
"Today Show" say that she is really going out and dealing with the
problems of drug as it relates to teenagers, or to adolescents. Fif-
teen percent of the babies born in the United States are African
American and 50 percent of those, she says, are affected with
AIDS. And certainly, as we begin to look at the issue of the infec-
tion among, not only individuals that we know within the next 14
years that we are going to have to provide care for, we have to
make sure that we provide services for women, for children, and
for minorities who have AIDS and who are infected with AIDS. It
is incumbent upon us to support this bill.
And on behalf of the AHA, Mr. Chairman, Mr. McDermott, Ms.
Pelosi, and Mr. Schumer, we certainly appreciate your efforts and
support those witnesses that have come before you today. I would
like also for you to have for the record the Annual Report of Park-
land Hospital along with a statement that was made here in Wash-
ington related to AIDS, and the services provided by the Dallas
community last month.
Thank you very much.
[The prepared statement of Ms. Watkins can be found in the ap-
pendix.]
Chairman GONZALEZ. Thank you very much for being here with
us today.
Mr. Davis.
STATEMENT OF JIM DAVIS, REPRESENTATIVE, HOUSING COM-
MITTEE OF AIDS COALITION TO UNLEASH POWER, NEW YORK
Mr. DAvIs. Yes. Before I read my remarks I would like to make
three quick notes regarding the hearing itself.
I was told that there is no handicapped parking available at this
building for people who come to testify.
Two, I'm disappointed that Mrs. Roukema, who represents my
hometown of Ramsey isn't here today and she's not yet a co-spon-
sor of the McDermott bill.
I am glad to see that another Representative of an old neighbor-
hood of mine in Boston, Barney Frank, was not only here today but
is already a co-sponsor.
Chairman GONZALEZ. Were you in touch with Staff about park-
ing?
Mr. DAVIS. Yes.
Chairman GONZALEZ. I'm pretty sure there should be.
Mr. DAVIS. Next time.
Chairman GONZALEZ. Oh, no.
It should be available.
We do have availability for the disabled.
It was a question of witnesses being eligible. I think there's some
kind of mix-up but I have never had any problems as far as my
own district office here arranging for persons coming up from the
PAGENO="0077"
73
district or from any other place who happen to be disabled and
need parking. I am sorry we had that mix-up.
Mr. DAVIS. OK.
Chairman GONZALEZ. I wasn't aware of it but you do have facili-
ties.
Mr. DAVIS. Great.
We're now entering the 10th year of the AIDS crisis.
Although sexual transmission of the HIV virus has declined
among gay men, it is still spreading rapidly through needle-shar-
ing, heterosexual transmission and mother to child transmission.
As the epidemic evolves, AIDS is increasingly tending to become a
disease of people of color, of the poor, of the uninsured, and of the
poorly housed and homeless.
According to the Center for Disease Control's definition of
AIDS-not the entire spectrum of HIV illness-as of January 1990
there have been 121,645 diagnoses of AIDS in America; 49,000 of
these people are still living. By the end of the 1992 the CDC
projects that this number of people living with AIDS will more
than double to 102,000.
The incubation period for ~the virus developing into the, quote,
"full-blown disease" can be as long as 10 years.
In addition to the above numbers of already "diagnosed" people,
with AIDS, the CDC estimates that 1 million to 1½ million Ameri-
cans are now nonsymptomatic but infected with the HIV virus.
The photograph on the easel shows New York City's most vio-
lent, quote, "shelter" for ~single men, Fort Washington in the
Bronx. I happen to have witnessed the murder of a medically frail
man by four guards at the East Third Street Men's Shelter in Man-
hattan two summers ago. Conditions at both shelters are filthy.
Toilets and showers are inadequate and people with infectious dis-
eases and suppressed immune systems sleep crowded together,
giving each other tuberculosis and other diseases.
On the coldest night of this winter the inhabitants of this shelter
in the Bronx were locked out. Why? Because the city was on a
:`neverbefore-seen cleaning binge to make the, quote, "shelter" look
better for the visit of the National AIDS Commission the following
day. We estimate that about 80 percent of the people in this, quote,
"shelter" are at least HIV positive, some of whom have HIV illness
and some of whom have CDC defined AIDS.
A member of the National AIDS Commission commented that
the tightly packed beds in this, quote, "shelter" reminded her of
the NAMES Project AIDS quilt.
In New York City there are presently between 9,000 and 11,000
homeless people living with AIDS, according to figures that are a
year. old. For the~entire State of New York~ the number is at least
12,000. By `1993 there will be an incredible number of 30,000 home-
less people living with AIDS in New York State.
The crisis of homeless people with AIDS is being neglected at all
levels of government:
(A) New York City government is increasingly making its Divi-
sion of AIDS Services, DAS, into an obstacle course for applicants
with AIDS and HIV illness, leaving most of the homeless ones on
the streets, in the parks, in the subway tunnels and in the general,
so-called, quote, "shelters."
PAGENO="0078"
74
Instead of giving the most medically vulnerable of the homeless
priority in our big, quote, "ten year housing plan," the bureaucrats
are clinging to the unhealthy and unsafe congregate shelter eon-
cept. There are presently only 140 units of scattered site housing-
with services-presently operating, which is what most people
living with AIDS need.
(B) New York State government is using housing in residential
facility models-on paper that is-almost nothing is operating
yet-which were designed for geriatric and mentally ill popula-
tions, instead of designing and adequately funding housing and fa-
cility models to respond to the specific facts of AIDS.
(C) Federal Government has not done anything to help house
people with AIDS. Over the past 9 years of the AIDS crisis there
has been a shocking total lack of Presidential leadership.
The 1988 Congressman Jack Kemp of New York State voted
against the McKinney Act. This was the year it was defeated. In
1989 the McKinney Act passed. Then the Department of Housing
and Urban Development under Secretary Kemp sabotaged the
Act's potential to fund two projects, one in San Diego and one in
New York City tailored for the specific needs of people living with
AIDS by the issuance of an internal legal memorandum. (See later
correction of dates: 1987 and 1988.)
This refusal to fund projects targeted for people with AIDS was
in spite of the surplus in the program due to the lack of enough
applications. Congressman McKinney can't be here to protest it be-
cause he died of AIDS.
On December 18th, 1989 the PWA Housing Committee of ACT
UP New York met with HUD Under Secretary Anna Kondratas
and her staff about the overall homeless AIDS crisis. For every
concern or question we received back a, quote, "reason" was action
was, quote, "impossible," supposedly due to the law.
This is not in my prepared testimony but to answer Representa-
tive Frank's question about the section 202 problems, AIDS has
been ruled by HUD to be not a "long-term disability" because you
die too fast. Therefore, you must have another disability, not just
what was discussed: "another infection." In other words, if you are
blind to begin with, they can't keep you out of a building for blind
people just because you have AIDS or if you were to go blind from
cytomegalovirus (CMV).
The other problem is they do not allow dedicated facilities to
AIDS although any such facility would inevitably deal with a mul-
tiplicity of other disabilities which people with AIDS have.
Going back to the prepared testimony, there cannot be even a
single demonstration project this year from discretionary money,
due to that money's having been eliminated by the HUD Reform
Act, in the wake of the scandal.
The most important fact we verified at the meeting was the total
lack of leadership at HUD to design and propose new programs to
meet this crisis. Our follow-up letter seeking to continue the dia-
logue was not even answered.
One change we need at HUD is to revise the, quote, "priority
system" for placement in HUD funded apartments in local housing
authorities. The present system, according to officials of the New
York City Housing Authority, does not recognize that the specific
PAGENO="0079"
75 S
nature of Acquired Immunity Deficiency Syndrome includes the
fact that being homeless may kill a person by exposure to oppor-
tunistic infections, which other people would have immunity to,
nor does it recognize the. ielated violence against people perceived
as having HIV illness or AIDS in the, quote, "shelters."
Also, the. individual applicants' problems of homelessness and
medical emergency and/or. disabilityr are not considered in a com-
pounded manner.
Either~ problem will get a:person the. priority as given to
the person who has. both problems or~.three problems. To a person
with AIDS the two problems not~ only add to each other, but the
combination `~~5 synergistic. The~ total is more than the simple addi-
tion of the parts. You can die from being homeless with AIDS or
have your life shortened.
Therefore, not only should HUD and local housing authorities es-
tablish a super medical emergency category for AIDS, a category
above that of medical conditions which are not life-threatening in
relation to conditions in the, quote, "shelters," but the housing ap-
plicants' several priority one type problems should be considered
additively. People with AIDS and homeless should be Priority 1-A.
People with other medical emergencies and one other problem
should be Priority 1-B. Situations with three of those problems not
including AIDS should be 1-C, and so forth.
Until this reform is enacted, the priority placement system will
be insensitive to the life-shortening combination of AIDS and ho-
melessness.
Four comments on the AIDS opportunities, AIDS Housing Oppor-
tunities Act, H.R. 3423:
(1) It's a start. This and any further AIDS housing policies should
be developed by Congress in full consultation with the individuals
and groups of people living with AIDS, AIDS service organizations,
and advocacy organizations and AIDS activist organizations. These
are the experts.
Incidentally, the expression "AIDS victims" is not considered
proper. The terms preferred are People with AIDS and People
Living with AIDS.
(2) section 8 certificates included in the bill often returned
unspent by New York City applicants, due to the minuscule apart-
ment vacancy rate and the higher than average local rents. This
funding would therefore tend to be skewed against some cities such
as New York, with the bulk of the homeless PWA population, espe-
cially as the epidemic evolves.
Therefore, any unspent money in each city's share of the section
8 funding should be made available for the part of the Act funding
development and operation of, quote, "permanent housing" in that
city.
(3) SRO's. Single Room Occupancy hotels without individuals
kitchens and bathrooms are not suitable as permanent housing.
Due to the nature of AIDS sometimes including chronic diarrhea,
one person-one bathroom is the required standard. PWA's also
need individual refrigerators to store medications and special foocts
intended to counteract the wasting syndrome. Even if there is some
sort of group kitchen, there still must be an individual kitchen, so
then it's not an~ SRO we're talking about but an apartment, wheth-
PAGENO="0080"
76
er it be a studio or larger depending on how many family members
may be included.
For permanent housing the apartment with visiting case manag-
er and visiting home health care service if required is the mini-
mum standard. Therefore this SRO money should be shifted to the
permanent housing section of the bill.
(4) "Community residences," permanent housing interpreted to
mean individual apartments scattered in many buildings housing
mostly non-PWAs or possibly in clustered buildings. The problem,
by the way, with putting different kinds of disabilities into one
building is the complication of getting all these funding streams to-
gether and finding someone who will even attempt it.
This section is the type of thing, the "community residence" sec-
tion is the type of thing that the overwhelming majority of people
living with AIDS need.
The funding level here needs to be determined by the real scale
of the need.
I am almost finished. Also the program must be implemented in
a simple and flexible enough manner so that innovative communi-
ty-based organizations can actually apply for and receive the funds.
The McKinney Act program' as I mentioned, did not receive
enough applications, certainly not due to the lack of need; so HUD
needs some congressional guidance to make sure that in its imple-
mentation, the McDermott-Pelosi-Schumer Act will be usable.
Attached to this testimony is a copy of a recent article from the
"Amsterdam News," about placing of people with AIDS in New
York City shelters.
Finally, the People with AIDS Housing Committee of ACT UP
New York is available to consult with any Member of Congress on
this or any future legislation regarding housing for people living
with AIDS.
Thank you.
[The prepared statement of Jim Davis can be found in the appen-
dix.]
Chairman GONZALEZ. Mr. Davis, first, I think you ought to be
corrected on some mistakes.
The 1988 so-called McKinney Act that year did pass. It didn't
fail.
Yes, Secretary Kemp's whole record while he was a Member of
the House was not exactly pro-Housing, as I remind him whenever
I want to make him uncomfortable.
Mr. DAVIS. It was 1987 and 1988 not 1988 and 1989.
Chairman GONZALEZ. And Mr. McKinney himself, the Act was
named after him at the time he was dying.
Mr. DAVIS. Right.
Chairman GONZALEZ. But the most formidable architect of that
as he had been pioneering in that together with me was Mr. Vento,
who was here a little bit earlier.
Mr. DAVIS. Uh-huh.
Chairman GONZALEZ. Mr. McKinney in fact had practically a 100
percent voting record identical to Secretary Kemp's until about
1985 and thereafter, so that, you know, you don't want to get lost.
As to the semantics of using the term AIDS victims. Certainly
the whole litany of testimony we've had shows that whether a
PAGENO="0081"
77
person should be classified as a person with AIDS or not certainly
the whole testimony proves that they are victims. They are victim-
ized, so that I don't think we need to quarrel about semantics. I
think if we get into that we won't concentrate on what is going to
be a very difficult, at this point almost insurmountable, task if we
are going to have legislation begun, just the mere authorization.
We want to get some money and it's going to take everything we've
got to do it. -
We have a recorded vote notice at this point.
Ms. MCGUIRE. I am happy to take only 5 minutes. I will be very
brief.
Chairman GONZALEZ. Tere will be only about 5 minutes remain-
ing.
What is the wish of my two colleagues?
Do you want to wind it up? I am open to suggestions. Either way
is fine with me.
Ms. MCGUIRE. That's fine.
Chairman GONZALEZ. Well, let's hear from you, Ms. McGuire.
STATEMENT OF JEAN McGUIRE, EXECUTIVE DIRECTOR, AIDS
ACTION COUNCIL
Ms. MCGUIRE. Thank you very much. Thank you for your
thoughts on this, too.
There is very little that needs to be added to the eloquent speech-
es that have been given today.
I am Jean McGuire. I am the director of the AIDS Action Coun-
cil. We represent here in Washington the public policy interests of
many of the organizations you have actually heard from today and
who are at the front lines providing services around the country.
I also chair an organization, a coalition called the National Orga-
nizations Responding to AIDS, which is on record in support of this
bill and is helping-I am very pleased to see that these hearings
are being held.
I think that what we have all been about here today is calling
attention to and essentially indicting a Federal Government that in
many respects has allowed the weight of one national tragedy, one
that has chosen to largely ignore the HIV epidemic, to exacerbate
another national tragedy that frankly it helped to create, and that
is the plight of homelessness.
So I think what we are here today is to reinforce that in terms of
the national response to this disease there must be a housing com-
ponent.
What I would like to do is reflect in a substantive way in terms
of the programs on what the needs that were articulated today sug-
gest in terms of activities for this committee and I think that from
an overall perspective what we are talking about is a continuum of
services, that there are a variety of different housing models that
must be supported both ones that are targeted and designated for
this population as well as ones that are integrated and currently
structured public housing and other programs.
First of all, we want to heartily recommend that the provisions
of the H.R. 3423 will be incorporated into the upcoming omnibus
housing legislation.
PAGENO="0082"
78
Secondly, we want to assume that within those provisions the
ability to develop designated AIDS housing for people with HIV
under the section 202 program will be provided and I would very
much encourage and will be happy to work with the committee
that the questions that Mr. Frank was indicating should be asked
to HUD in terms of implementation of its policy there should be
sent over from this committee to the agency.
It is true that a memorandum at the end of last year did indicate
that HUD. had reversed its contention before that people with
AIDS were. not covered under the section 202 program. However,
the implementation of that continues to be quite a grave problem.
I also think that relative to the remarks Mr. Greenwald made
there is a need to determine whether or not we need statutory in-
structions to assure that existing programs, non-AIDS specific pro-
grams, existing programs are as well and as broadly utilized to
meet the needs of people with AIDS and of particular concern I
think are the impediments that we heard that are related to inap-
propriate restrictions around concern about their medical condi-
tion, medical status, this kind of artificial line that we keep getting
drawn in HUD around housing for people that are sick versus
housing for people that aren't sick. I think that has a lot to do with
concerns about whether or not we are remaking and making medi-
cal facilities.
We are not proposing in the course of this Act nor has Mr.
McDermott proposed the creation of additional medical facilities.
We have talked about providing housing for people who happen to
have medical needs, those needs which will largely be provided in
other settings or in the course of their living environment.
I think we are also greatly concerned about finding ways to en-
hance communities' abilities without restriction from HUD to actu-
ally target tenant selection criteria in an appropriate manner.
I also believe that we need to remove inappropriate restrictions
that sometimes result in the separating of families who are affect-
ed by HIV in order for them to access housing.
We also look to encourage HUD to develop a memorandum of
agreement with the Health Resources Services Administration
under the Public Health Service so that HRSA can be involved in
the management of AIDS-related programs that would be operated
under the section 232 insurance program.
As you are probably familiar, there is already such a memoran-
dum agreement in terms of the section 242 program. I think that
that has provided a good basis for indicating that 232 projects
would be well advantaged by that agreement.
I also think it maybe suggests that we should look at HRSA's
possible involvement in the review process or in the consultation
with HUD in terms of administration of the section 202.
I want to finally respond to two points that Mr. Dannemeyer
made relative to this housing proposal.
First of all, regarding his concern around the fact that provisions
in this bill could potentially preempt local zoning determinations
relative to the location of hospice, I don't think I need to ./a~sure
you but I wanted it stated on the recOrd that there is nothing in
this bill that would do that but I also want to remind you that the
Fair Housing Act which you supported and passed a few years ago
PAGENO="0083"
79
doesn't allow for discrimination on the basis of disability in the lo-
cation of those settings anyway, so that is not something that
should be under considqration by this committee.
Secondly, the committee should not attempt to make resources
available under this Act at all contingent on State-based require-
ments and terms of reporting procedures or in terms of contact
tracing or other surveillance activities. First of all, this is a State
issue. States determine what they need and how they want to go
about those procedures.
Secondly, every State in this country does have such procedures
in place which are tailored to meet the needs of their jurisdiction
so I would very much encourage you not to bring those consider-
ations into the course of answering what is here a very targeted
housing concern.
I think in final word what you have heard today is the needs of a
particular group of people among those who are otherwise impover-
ished and at risk in terms of our housing. We are standing here in
solidarity with the rest of people who are disabled and poor and
who are at risk for housing but we are very much recognizing the
particular implications of lack of housing to this population and
therefore we very much encourage the incorporation of the provi-
sions that Mr. McDermott has put forward as well as some addi-
tional ones that we have recommended into the bill.
The Council and the National Organizations Responding to AIDS
will continue to work with the committee and staff in these efforts.
I also believe that our work with the agency could maybe help to
ameliorate some of the problems that have gone on in inappropri-
ate interpretations of regulatory and other standards.
Thank you.
Chairman GONZALEZ. It's been about 8½ minutes since we had
the first notice. We've had the second notice since then, and so we
have limited time to allow the Members to go register to vote. I
would suggest that we submit whatever questions we have in writ- -~
ing to the witnesses. I may have one for Ms. Watkins, representing
the American Hospital Association. But if that's the case, unless
there is a brief comment from any one of the witnesses, we're going
to go ahead and adjourn. Tis subcommittee will stand adjourned
until further call of the chair.
Ms. MCGUIRE. Thank you very much.
Chairman GONZALEZ. Thank you.
[Whereupon, at 2:12 p.m., the hearing adjourned.]
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APPENDIX
March 21, 1990
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OPENING STATEMENT OF CHAIRMAN HENRY B. GONZALEZ
ON THE HOUSING NEEDS OF PERSONS WITH
ACQUIRED IMMUNE DEFICIENCY SYNDROME (AIDS)
WEDNESDAY, MARCH 21, 1990
THIS HEARING WILL FOCUS ON THE HOUSING NEEDS OF PERSONS WITH
ACQUIRED IMMUNE DEFICIENCY SYNDROME (AIDS). THIS HEARING MARKS THE
FIRST TIME A CONGRESSIONAL SUBCOMMITTEE HAS SPECIFICALLY FOCUSED ON
THE HOUSING NEEDS OF PERSONS WITH AIDS. THIS EFFORT IS SIMILAR TO
THE FIRST MAJOR CONGRESSIONAL HEARING WE HELD IN THIS SUBCOMMITTEE ON
THE PLIGHT OF THE HOMELESS IN DECEMBER 1982, WHICH FIRST BROUGHT
NATIONAL ATTENTION TO THE ISSUE OF HOMELESSNESS.
THE PURPOSE OF THIS HEARING IS TO FOCUS ON ANY LEGISLATIVE
PROPOSALS TO ADDRESS THE HOUSING NEEDS OF PERSONS WITH AIDS. I
BELIEVE THAT THE TESTIMONY RECEIVED BY THE SUBCOMMITTEE TODAY WILL
HELP US DEAL WITH THIS ISSUE IN OUR COMPREHENSIVE HOUSING AND
COMMUNITY DEVELOPMENT REAUTHORIZATION BILL, H. R. 1180. THE
SUBCOMMITTEE WILL CONSIDER H. R. 1180 IN LATE APRIL 1990.
LIKE OUR DECEMBER 1982 HEARING, THE ISSUE OF THE HOUSING NEEDS OF
PERSONS WITH AIDS SHOULD RECEIVE MAJOR NATIONAL ATTENTION GIVEN THE
SEVERITY OF THE PROBLEM AND THE INCREASING NUMBER OF HOMELESS PERSONS
WITH AIDS. FOR INSTANCE, A RECENT SURVEY CONDUCTED BY THE NATIONAL
COALITION FOR THE HOMELESS OF 26 COMMUNITIES INDICATES THAT THERE ARE
IDENTIFIABLE POPULATIONS OF HOMELESS PERSONS WITH AIDS IN ALL
COMMUNITIES SURVEYED. IN NEW YORK CITY, APPROXIMATELY 20-30% OF THE
HOMELESS ARE PERSONS WITH AIDS. ADDITIONALLY, OF THE 1.5 MILLION
INFECTED WITH THE HIV-VIRUS WHICH CAUSES AIDS, THE NUMBER OF PERSONS
WITH AIDS IS ESTIMATED AT OVER 120,000. THIS FIGURE IS EXPECTED TO
DOUBLE BY THE END OF NEXT YEAR.
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-2-
SEVERAL MEMBERS OF THE HOUSING SUBCOMMITTEE HAVE INTRODUCED THE
AIDS HOUSING OPPORTUNITY ACT, H.R. 3423, WHICH AUTHORIZES $290
MILLION TO PROVIDE HOUSING OPTIONS FOR PERSONS LIVING WITH AIDS AND
~O PREVENT HOMELESSNESS. THE BILL WOULD PROVIDE RESIDENTIAL
ALTERNATIVES TO COSTLY HOSPITAL CARE AND WOULD ENHANCE THE QUALITY OF
LIFE OF PERSONS LIVING WITH AIDS.
TODAY WE HAVE ASSEMBLED A LARGE NUMBER OF WITNESSES FROM AROUND
THE COUNTRY WHICH REPRESENTS A VARIETY OF VIEWS. THE CENTRAL POINT
THAT I BELIEVE EACH OF OUR WITNESSES WILL MAKE, HOWEVER, IS THAT
THERE IS A SUBSTANTIAL NEED FOR HOUSING FOR PERSONS WITH AIDS. IT IS
CLEAR THAT SOMETHING MUST BE DONE TO DEAL WITH THE HOUSING NEEDS OF
PERSONS WITH AIDS. H. R. 1180, CONTAINS PROVISIONS TO DEFINE PERSONS
WITH AIDS AS ELIGIBLE UNDER THE DEFINITION OF "HANDICAP" FOR THE
SECTION 202 ELDERLY AND HANDICAPPED HOUSING PROGRAM. HOWEVER, MUCH
MORE NEEDS TO BE DONE.
I LOOK FORWARD TO THE TESTIMONY OF OUR WITNESSES.
311: jr/es"HBG-3-21"
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I
101ST CONGRESS
1ST SEssioN * *
To provide appropriate housing for individuals with acquired immune deficiency
syndrome and related diseases.
IN T}IIE HOUSE OF REPRESENTATIVES
OCTOBER 5, 1989
Mr. MCDERMOTT (for himself, Ms. PELOSI, and Mr. SCmJMER) introduced the
following bill; which was referred to the Committee on Banking, Finance and
Urban Affairs
A BILL
To provide appropriate housing for individuals with acquired
immune deficiency syndrome and related diseases.
1 Be it enacted by the Senate and House of Representa-
2 tives of the United States of America in Congress assembled,
3 SECTION 1. SHORT TITLE AND TABLE OF CONTENTS.
4 (a) SHORT TITLE.-This Act may be cited as the
5 "AIDS Opportunity Housing Act".
6 (b) TABLE OF CONTENTS.-
Sec. 1. Short title and table of contents.
Sec. 2. Definitions.
TITLE I-GRANTS FOR All)S HOUSING INFORMATION AND
COORDINATION SERVICES
Sec. 101. Authorit~ and use of grants.
Sec. 102. Eligibility.
Sec. 103. Applications.
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2
Sec. 104. Selection and preferences.
Sec. 105. Report.
Sec. 106. Authorization of appropriations.
TITLE 11-AIDS SHORT-TERM SUPPORTED HOUSING AND SERVICES
DEMONSTRATION
Sec. 201. Demonstration program.
Sec. 202. Authorization of appropriations.
Sec. 203. Conforming amendment.
TITLE 111-PERMANENT AND TRANSITIONAL HOuSING AND
SERVICES
Sec. 301. Purpose.
Sec. 302. Section & certificate assistance.
Sec. 303. Section~ 8 moderate rehabilita~tion for single room occupancy dwellings.
Sec. 304. ~Grants for community residences and services.
Sec. 305. AIDS as:handicap for purposes of housing assistance.
Sec. 306. Reservationofassistance for individuals with AII)S.
1 SEC. 2. DEFINITIONS.
2 For purposes of. this Act:
3 (1) The term "acquired immunodeficiency syn-
4 drome and related diseases" means the disease of ac-
5 quired immunodeficiency syndrome and any conditions
6 arising from the etiologic agent for acquired immunode-
7 ficiency syndrome, including the disease known as
8 AIDS-related complex. The term does not include any
9 condition ~ofasymptomatic infection with the etiologic
10 agent for acquired immunodeficiency syndrome.
11 (2) The term "lower-income individual" means
12 any individual or family whose-incomes do not exceed
13 80 percent of the median income for the area, as deter-
14 mined by the Secretary of Housing and Urban Devel-
15 opment, with adjustments for small~r and larger fami-
16 lies, except that the Secretary may establish income
011111 3423 1111
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3
1 ceilings higher or lower than 80 percent of the median
2 income for the area if the Secretary finds that such
3 variations are necessary because of prevailing levels of
4 construction costs or unusually high or low family
5 incomes.
6 (3) The term "Secretary" means the Secretary of
7 Housing and Urban Development.
8 TITLE I-GRANTS FOR AIDS HOUSING
9 INFORMATION AND COORDINATION
10 SERVICES
11 SEC. 101. AUTHORITY AND USE OF GRANTS.
12 (a) AwrHORITY.-The Secretary of Housing and Urban
13 Development may make grants under this title to organiza-
14 tions and agencies eligible under section 102 for the delivery
15 of housing information services to individuals with acquired
16 immunodeficiency syndrome or related diseases and for co-
17 ordination of efforts to expand housing assistance resources
18 for such individuals.
19 (b) USE OF GRANTS.-Amounts received from grants
20 under this title may only be used for the following activities:
21 (1) HoUSING INFORMATION SERVIOES.-TO pro-
22 vide (or contract to provide) counseling, information,
23 and referral services to assist individuals with acquired
24 immunodeficiency syndrome or related diseases to
oHIR 3423 11-1
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4
1 locate, acquire, finance, and maintain housing and meet
2 their housing needs.
3 (2) RESOURCE IDENTIFICATION.-To identify,
4 coordinate, and develop, housing assistance resources
5 (including conducting preliminary research and making
6 expenditures . necessary to determine the feasibility of
7 specific housing-related initiatives) for individuals with
8 acquired immunodeficiency syndrome or related
9 diseases.
10 (c) PROHIBITION OF SUBSTITUTION OF FUNDS.-
11 Amounts received from grants under this title may not be
12 used to rep1a~e other amounts made available or designated
13 by State or local governments for use for the purposes under
14 this title.
15 SEC. 102. ELIGIBILITY.
16 To be eligible for a grant under this title, an applicant
17 for a grant under section 103 shall meet both of the following
18 requirements:
19 (1) PUBLIC OR NONPROFIT.-The applicant shall
20 be a public or nonprofit organization or agency.
21 (2) CAPABILITY.-The applicant shall have, in
22 the determination of the Secretary, the capacity and
23 capability to effectively administer a grant under this
24 title.
dR 3423 III
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5
1 SEC. 103. APPLICATIONS.
2 (a) IN GENEI~AL.-The Secretary shall establish proce-
3 dures and requirements to apply to receive grants under this
4 title, which shall include requiring each applicant to enter
5 into agreements with the Secretary, as the Secretary shall
6 require, as follows:
7 (1) 000PERATION.-The applicant shall agree
8 that the applicant will cooperate and coordinate in pro-
9 viding assistance under this title with the agencies of
10 the relevant State and local governments responsible
11 for services in the area served by the applicant for in-
12 dividuals with acquired immunodeficiency syndrome or
13 related diseases and other public and private organ-
14 izations and agencies providing services for such
15 individuals.
16 (2) No FEE.-The applicant shall agree that no
17 fee will be charged Of any lower-income individual for
18 any services provided with amounts from a grant under
19 this title and that if fees are charged of any other mdi-
20 viduals, the fees will be based on the income and re-
21 sources of the individual.
22 (3) CONFIDENTIALITY.-The applicant shall
23 agree to ensure the confidentiality of the name of any
24 individual assisted with amounts from a grant under
25 this title and any other information regarding individ-
26 uals receiving such assistance.
ollR 3423 III
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6
1 (4) FIN~&~iCIAI~ REOORDS.-The applicant shall
2 agree to maintain and provide the Secretary with fi-
3 nancial records sufficient, in the determination of the
4 Secretary, to ensure proper accounting and disbursing
5 of amounts received from a grant under this title.
6 SEC. 104. SELECTION AND PREFERENCES.
7 The Secretary shall select organizations and agencies
8 from eligible applicants under section 103 to receive grants
9 under this title. Tn selecting grant recipients under this sec-
10 tion, the Secretary shall give preference to the following eli-
11 gible applicants:
12 (1) EXPERIENCE.-Applicants that are experi-
13 enced in the delivery of emergency shelter or services,
14 housing assistance or information, or health care serv-
15 ices and have a demonstrated ability of providing serv-
16 ices in collaboration with other service providers.
17 (2) HIGH-INCIDENCE AI4EAS.-Applicants that
18 will undertake activities under this title in communities
19 with a high incidence (as determined by the Centers
20 for Disease Control of the Public Health Service, De-
21 partment~ of Health and Human Services) of acquired
22 immunodeficiency syndrome and related diseases.
23 (3) INTEGRATION OF SERVICES.-Applicants that
24 will undertake activities under this title in a manner
25 that effectively integrates the activities with activities
*HR 3423 III
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7
1 undertaken by other organizations and agencies in the
2 area providing services for individuals with acquired
3 imrnunodeficiency syndrome or related diseases.
4 (4) MINORITY 0UTREACIL-Applicants that will
5 undertake activities under this title in communities in
6 which the residents are predominantly members of mi-
7 nority groups.
8 SEC. 105. REPORT.
9 Any organization or agency that receives a grant under
10 this title shall submit to the Secretary, for any fiscal year in
11 which the organization or agency receives a grant under this
12 title, a report describing the use of the amounts received,
13 which shall include the number of individuals assisted, the
14 types of assistance provided, and any other information that
15 the Secretary determines to be appropriate.
16 SEC. 106. AUTHORIZATION OF APPROPRIATIONS.
17 There are authorized to be appropriated to carry out
18 this title $5,000,000 for each of fiscal years 1990 and 1991.
19 TITLE Il-AIDS SHORT-TERM SUPPORTED
20 HOUSING AND SERVICES DEMONSTRA-
21 TION
22 SEC. 201. DEMONSTRATION PROGRAM.
23 The Stewart B McKinney Homeless Assistance Act (42
24 u.S.C. 11301 et seq.) is amended-
*IIR 3423 III
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8
1 (1) by redesignating section 417 as section 418;
2 and
3 (2) by inserting after section 416 the following
4 new section:
5 "SEC. 417. AIDS SHORT-TERM SUPPORTED HOUSING AND
6 SERVICES DEMONSTRATION.
7 "(a) AUTHORITY AND USE OF GRANTS.-
8 "(1) AUTHORITY.-The Secretary may make
9 grants to organizations and agencies eligible under sub-
10 section (b) to carry out programs to demonstrate the
11 effectiveness of various methods of preventing home-
12 lessness among individuals with acquired immunodefi-
13 ciency syndrome or related diseases and of developing
14 and providing short-term supported housing and serv-
15 ices for homeless individuals with acquired immunodefi-
16 ciency syndrome or related diseases.
17 "(2) USE OF GRANTS.-Any amounts received
18 from grants under this section may only be used to
19 carry out a demonstration program to provide (or con-
20 tract to provide) assistance to individuals with acquired
21 immunodeficiency syndrome or related diseases who
22 are homeless or in need of housing assistance to pre-
23 vent homelessness, which may include the following
24 activities:
*ffl~ 3423 III
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9
1 "(A) SHORT-TERM SUPPORTED HOUSING.-
2 Purchasing, leasing, renovating, repairing, and
3 converting facilities to provide short-term shelter
4 and services.
5 "(B) SHORT-TERM HOUSING PAYMENTS AS-
6 SISTANCE.-Provlthng rent assistance payments
7 for short-term supported housing and rent, mort-
8 gage, and utilities payments to prevent homeless-
9 ness of the lessee or mortgagor of a dwelling.
10 "(C) SUPPoRTIvE SERvIcES.-Provldlng
11 supportive services, to individuals assisted under
12 subparagraphs (A) and (B), including health,
13 mental health, assessment, permanent housing
14 placement, drug and alcohol abuse treatment and
15 counseling, day care, and nutritional services.
16 "(ID) MAINTENANCE AND ADMINISTRA-
17 TI0N.-Providing for maintenance, administration,
18 security, operation, insurance, utilities, furnish-
19 ings, equipment, supplies, and other incidental
20 costs relating to any short-term supported housing
21 provided under the demonstration program under
22 this section.
23 "(E) TECHNICAL ASSISTANCE.-Providmg
24 technical assistance to such individuals to provide
25 assistance in gaining access to benefits and serv-
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10
1 ices for homeless individuals provided by the Fed-
2 eral Government and State and local govern-
3 ments.
4 "(3) P~ornrn'rio~ OF SUBSTITUTION OF
5 FUNDS.-Amounts received from grants under this sec-
6 tion may not be used to replace other amounts made
7 available or designated by State or local governments
8 for use for the purposes under this section.
9 "(b) ELIGIBILITY.-To be eligible for a grant under this
10 section, an applicant for a grant shall meet both of the follow-
11 ing requirements:
12 "(1) PUBLIC OR N&NRROFIT.-The applicant
13 shall be a public or nonprofit organization or ~agency.
14 "(2) CAPABILITY.-The applicant shall have, in
15 the determination of the Secretary, the capacity and
16 capability to effectively administer a grant under this
17 section.
18 "(c) DEMONSTRATION PROGRAM REQUIREMENTS.-
19 "(1) MINIMUM USE PERIOD FOR STRUCTURES.-
20 "(A) IN GENERAL.-Any building or struc-
21 ture assisted with amounts from a grant under
22 this section shall be maintained as a facility to
23 provide short-term supported housing or assist-
24 ance for individuals with acquired immunodefi-
25 ciency syndrome or related diseases-
*IIR 3423 HI
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11
1 "(i) in the case of assistance involving
2 major rehabilitation or acquisition of the
3 building, for a period of not less than 10
4 years; and
5 "(ii) in any other case, for a period of
6 not less than 3 years.
7 "(B) WAJvER.-The Secretary may waive
8 the requirement under subparagraph (A) with re-
9 spect to any building or structure if the organiza-
10 tion or agency that received the grant under
11 which the building was assisted demonstrates, to
12 the satisfaction of the Secretary, that-
13 "(i) the structure is no longer needed to
14 provide short-term supported housing or as-
15 sistance or the continued operation of the
16 structure for such purposes is no longer fea-
17 sible; and
18 "(ii) the structure will be used to benefit
19 individuals or families whose incomes do not
20 exceed 80 percent of the median income for
21 the area, as determined by the Secretary of
22 Housing and Urban Development, with ad-
23 justments for smaller and larger families,
24 except that the Secretary may establish
25 income ceilings higher or lower than 80 per-
oUR 3423 ifi
27-986 0 - 90 - 4
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12
1 cent of the median income for the area if the
2 Secretary finds that such variations are nec-
3 essary because of prevailing levels of con-
4 struction costs or unusually high or low
5 family incomes.
6 "(2) RESIDENCY AND LOCATION LIMITATIONS
7 ON SHORT-TERM SUPPORTED HOUSING.-
8 "(A) RESIDENCY.-A short-term supported
9 housing facility assisted with amounts from a
10 grant under this section may not provide shelter
11 or housing at any single time for more than 50
12 families or individuals.
13 "(B) L0C4TI0N.-A facility for short-term
14 supported housing assisted with amounts from a
15 grant under this section may not be located in or
16 contiguous to any other facility for emergency or
17 short-term housing that is not limited to use by
18 individuals with acquired immunodeficiency syn-
19 drome or related diseases.
20 "(0) W~&IvER.-The Secretary may, as the
21 Secretary determines appropriate, waive the limi-
22 tations under paragraphs (1) and (2) for any dem-
23 onstration program or short-term supported hous-
24 ing facffity.
*fflt 3423 Hi
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13
1 "(3) VOLUNTARY ASSISTANOE.-A demonstration
2 program under this section shall provide assistance
3 only for individuals who have voluntarily disclosed the
4 status of their affliction with acquired immunodefi-
5 ciency syndrome or related diseases.
6 "(4) TERM OF ASSISTANCE.-
7 "(A) SUPPORTED HOUSING ASSISTANCE.-
8 A demonstration program under this section may
9 not provide residence in a short-term housing fa-
10 cility assisted under this section to any individual
11 for a sum of more than 60 days during any 6-
12 month period.
13 "(B) HOUSING PAYMENTS ASSISTANCE.-A
14 demonstration program under this section may not
15 provide assistance for rent, mortgage, or utilities
16 payments to any individual for rent, mortgage, or
11 utilities costs accruing over a period of more than
18 21 weeks of any 52-week period.
19 "(5) PLACEMENT.-A demonstration program
20 under this section shall provide for any individual who
21 has remained in short-term supported housing assisted
22 under the demonstration program, to the maximum
23 extent practicable, the opportunity for placement in
24 permanent housing or an environment appropriate to
25 the health and social needs of the individual.
~HIR 3423 III
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14
1 "(6) PRESUMPTION FOR INDEPENDENT LIVING.-
2 In providing assistance under this section in any case
3 in which the residence of an individual is appropriate
4 to the needs of the individual, a demonstration program
5 under this section shall, when reasonable, provide for
6 assistance in a manner appropriate to maintain the in-
7 dividual in such residence.
8 "(7) CASE MANAGEMENT SERVIOES.-A demon-
9 stration program under this section shall provide each
10 individual assisted under the program with an opportu-
11 nity, if eligible, to receive case management services
12 available from the appropriate social service agencies
13 of the relevant State and local government.
14 "(8) REcORDKEEPING.-Any organization or
15 agency that receives a grant under this section shall
16 maintain and provide the Secretary with financial
17 records sufficient, in the determination of the Secre-
18 tary, to ensure proper accounting and disbursing of
19 amounts received from a grant under this section.
20 "(9) Co~IDENTIALITY.-Any organization or
21 agency that receives a grant under this section shall
22 maintain the confidentiality of the name of any individ-
23 ual assisted with amounts from a grant under this see-
24 tion and any other information regarding individuals re-
25 ceiving such assistance.
*fflt 3423 111
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15
1 "(10) REPORTS.-Any organization or agency
2 that receives a grant under this section shall submit to
3 the Secretary, for any fiscal year in which the organi-
4 zation or agency receives a grant under this section, a
5 report describing the use of the amounts received,
6 which shall include a description of the types of assist-
7 ance provided with the amounts, the costs of assistance
8 provided, the number of individuals assisted, and any
9 other information that the Secretary determines to be
10 appropriate.
11 "(d) APPLIOAPIONS.-The Secretary shall establish
12 procedures and requirements for application of organizations
13 and agencies to receive grants under this section, which shall
14 include the following:
15 "(1) P~oposAL.-Each applicant shall submit a
16 proposal describing the demonstration program to be
17 carried out with a grant received under this section, in-
18 eluding assurances that the applicant will enter into
19 written agreements with service providers qualified to
20 deliver any. appropriate services provided under the
21 demonstration program under this section that are not
22 provided directly by the applicant.
23 "(2) MINORITY OUTREACH AGREEMENTS.-EaCh
24 applicant shall agree to provide a reasonable amount of
25 assistance under this section, in the determination of
*IIIR 3423 ifi
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16
1 the Secretary, in communities in which the residents
2 are predominantly members of minority groups.
3 "(e) SELECTION AND PREFERENCES.-
4 "(1) IN GErci~RAL.-The Secretary shall select
5 organizations and entities from eligible applicants under
6 subsections (b) and (d) to receive grants under this
7 section.
8 "(2) PREFERENCES.-In selecting grant recipi-
9 ents under this subsection, the Secretary shall give
10 preference to the following eligible applicants:
11 "(A) ExPERIENCE.-Applicants that are ex-
12 perienced in the delivery of emergency shelter,
13 drug abuse treatment or counseling, or health
14 care services.
15 "(B) PoTENT~L.-Applicants whose appli-
16 cations and proposals for the demonstration pro-
17 gram under subsection (d) indicate a high proba-
18 biity for success of the program and feasibility for
19 replication of the program in other areas and by
20 other organizations.
21 "(0) NON-FEDERAL FUNDING.-Applicants
22 that have acquired or secured non-Federal funds
23 or resources to supplement any amounts received
24 from grants under this section.
*fflt 3423 ifi
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17
1 "(3) PROGRAM FOR INTRAVENOUS DRUG
2 USERS.-In providing ---grants under this section for
3 each fiscal year, the Secretary -(subject only to appro-
4 priations Acts providing amounts for -assistance under
5 this paragraph sufficient to carry out this paragraph)
6 ~shall make not less than 1 grant to carry out a demon-
7 ~stratiom.program under this- section for individuals with
8 ~acquired iinmunodeficiency syndrome or related dis-
9 eases and who are intravenous drug users.
10 "(f) DEFINITION OF ACQUIRED IMMUNODEFICIENCY
11 SYNDROME AM) RELATED DIsEASE5.-The term ~`acquired
12 immunodeficiency syndrome and related diseases" means the
13 disease of acquired immunodeficiency syndrome and any con-
14 ditions arising from the etiologic agent for acquired imrnuno-
15 deficiency syndrome, including the disease known as AII)S-
16 related complex. The term does not include any condition of
17 asymptomatic infection with the etiologic agent for acquired
18 immunodeficiency syndrome.
19 "(g) REPORT TO CONGRESS.-For each fiscal year in
20 which the Secretary makes grants under this section, the
21 Secretary shall submit to the Congress, not later than the
22 first January 10 occurring after the conclusion of such fiscal
23 year, a report describing the use of any grants made during
24 the fiscal year, the costs of any services provided with grant
25 amounts, an evaluation of the effectiveness of the various
}IB 3423 ffl--3
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18
1 demonstration projects established with the grants, and any
2 recommendations for preventing homelessness among individ-
3 uals with acquired immunodeficiency syndrome or related dis-
4 eases and meeting the needs of homeless individuals with ac-
5 quired immunodeficiency syndrome or related diseases.".
6 SEC. 202. AUTHORIZATION OF APPROPRIATIONS.
7 Section 418 of the Stewart B. McKinney Homeless As-
8 sistance Act (as redesignated by section 201(1) of this Act) is
9 amended by inserting after the period at the end the follow-
10 ing new sentence: "There are authorized to be appropriated
11 $15,000,000 for each of fiscal years 1990 and 1991 to carry
12 out the demonstration program under section 417.".
13 SEC. 203. CONFORMING AMENDMENT.
14 The table of contents of the Stewart B. McKinney
15 Homeless Assistance Act is amended by striking the item
16 relating to section 417 and inserting the following new items:
"Sec. 417. AIDS short-term supported housing and services demonstration.
"Sec. 418. Authorization of appropriations.".
17 TITLE Ill-PERMANENT AND TRANSITIONAL
18 HOUSING AND SERVICES
19 SEC. 301. PURPOSE.
20 The purpose of this title is to increase the availability of
21 safe, decent, and sanitary housing of a permanent and tempo-
22 rary nature for individuals with acquired immunodeficiency
23 syndrome or related diseases who are capable of independent
*fflt 3423 ifi
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19
1 living or living in community residential facilities and to pro-
2 vide services for such individuals.
3 SEC. 302. SECTION 8 CERTIFICATE ASSISTANCE.
4 (a) INCREASE IN BUDGET AUTHORITY.-The budget
5 authority available under section 5(c) of the United States
6 Housing Act of 1937 (42 U.S.C. 1437c(c)) for assistance
7 under the certificate program under section 8(b) of such Act
8 is authorized to be increased by $100,000,000 on or after
9 October 1, 1989, and by $100,000,000 on or after Octo-
10 ber 1, 1990.
11 (b)TJSE0FFUND5.-
12 (1) REQUIRED USE.-The amounts made avail-
13 able under this section shall be used only for assistance
14 payments for lower-income individuals with acquired
15 immunodeficiency syndrome or related diseases.
16 (2) PERMISSIVE USE.-*-
17 (A) SHARED HOUSING ARRANGEMENTS.-
18 Amounts made available under this section may
19 be used to assist individuals who elect to reside in
20 shared housing arrangements in the manner pro-
21 vided under section 8(p) of the United States
22 Housing Act of 1937 (42 U.S.C. 1437f(p)), except
23 that, notwithstanding such section, assistance
24 under this section may be made available to non-
25 elderly individuals. The Secretary shall issue any
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/
20
1 standards for shared housing under this pa~jagraph
2 that vary from standards issued under section 8(p)
3 of the United States Housing Act of 1937 only to
4 the extent necessary to provide for circumstances
5 of shared housing arrangements un4er this para-
6 graph that differ from circumstances of shared
7 housing arrangements for elderly families under
8 section 8(p) of the United States Housing Act of
9 1937.
10 (B) PRo~rEcT-BAsED.-Assistance payments
11 under this section may be attached to the struc-
12 ture. The amount of assistance provided under
13 this section shall not be counted for purposes of
14 the 15 percent limitations under subparagraphs
15 (A) and (B) of section 8(d)(2) of the United States
16 Housing Act of 1937 (42 U.S.C. 1437f(d)(2)) with
17 respect to any public housing agency.
18 (c) ALL0OATI0N.-The amounts made available under
19 this section shall be allocated by the Secretary in a manner to
20 ensure, to the extent practicable, equitable allocation
21 throughout the States (as the term is defined in section
22 3(b)(7) of the United States Housing Act of 1937 (42 U.S.C.
23 1437a(b)(7))). The assistance shall be made available to appli-
24 cants based on demonstrated need for the assistance under
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21
1 this section and demonstrated ability to undertake and carry
2 out a program to be assisted under this section.
3 (d) LIMITATIONS.-Any public housing agency receiv-
4 ing amounts made available under this section shall comply
5 with the following requirements:
6 (1) SERvIOES.-The public housing agency shall
7 provide for qualified service providers in the area to
8 provide appropriate services to the individuals assisted
9 under this section.
10 (2) INTENsIvE ASSISTANCE.-FOr any individual
11 who requires more care than can be provided in hous-
12 ing assisted under this section, the public housing
13 agency shall provide for the locating of a care provider
14 who can appropriately care for the individual and refer-
15 ral of the individual to the care provider.
16 SEC. 303. SECTION 8 MODERATE REHABILITATION FOR
17 SINGLE ROOM OCCUPANCY DWELLINGS.
18 (a) INCREASE IN BUDGET AUTH0RrrY.-The budget
19 authority available under section 5(c) of the United States
20 Housing Act of 1937 (42 U.S.C. 1437c(c)) and section 441(a)
21 of the Stewart B. McKinney Homeless Assistance Act (42
22 U.S.C. 11401(a)), for assistance under section 8(e)(2) of the
23 United States Housing Act of 1937 (42 U.S.C. 1437f(e)(2)) is
24 authorized to be increased by $35,000,000 on or after Octo-
25 ber 1, 1989, and by $35,000,000 on or after October 1,
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22
1 1990. Any amounts made available under this subsection
2 shall be used only for occupancy for individuals with acquired
3 immunodeficiency syndrome or related diseases.
4 (b) LIMITATI0N.-Each contract for housing assistance
5 payments entered into with the authority under this section
6 shall require the provision to individuals assisted under this
7 section of the following assistance:
8 (1) SERvICES.-Appropriate services provided by
9 qualified service providers in the area.
10 (2) INTENSIVE ASSISTANCE.-For any individual
11 who requires more care than can be provided in hous-
12 ing assisted under this section, locating a care provider
13 who can appropriately care for the individual and refer-
14 ral of the individual to the care provider.
15 SEC. 304. GRANTS FOR COMMUNITY RESIDENCES AND SERV-
16 ICES.
17 (a) GRANT AuTHORITY.-The Secretary of Housing
18 and Urban Development may make grants to States and met-
19 ropolitan areas to develop and operate community residences
20 and provide services for persons with acquired immunodefi-
21 ciency syndrome or related diseases.
22 (b) COMMUNITY RESIDENCES AND SERVICES.-
23 (1) COMMUNITY RESIDENCES.-
24 (A) IN GENERAL.-A conmiunity residence
25 under this section shall be a multiunit residence
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23
1 designed for individuals with acquired immunodefi-
2 ciency syndrome or related diseases for the fol-
3 lowing purposes:
4 (i) To provide a lower cost residential
5 alternative to institutional care and to pre-
6 vent or delay the need for institutional care.
7 (ii) To provide a permanent or transi-
8 tional residential setting with appropriate
9 services that enhances the quality of life for
10 individuals who are unable to live independ-
11 ently.
12 (iii) To prevent homelessness among in-
13 dividuals with acquired immunodeficiency
14 syndrome or related diseases by increasing
15 available suitable housing resources.
16 (iv) To integrate individuals with ac-
17 quired immunodeficiency syndrome or related
18 diseases into local communities and provide
19 services to maintain the abilities of such indi-
20 viduals to participate as fully as possible in
21 community life.
22 (B) RENT.-Except to extent that the costs
23 of providing:Tesidence. are reimbursed or provided
24 by any other assistance from Federal or non-Fed-
25 eral public sources, each resident in a community
*HR 3423 Hi
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24
1 residence shall pay as rent for a dwelling unit an
2 amount equal to the following:
3 (i) For lower-income individuals, the
4 amount of rent paid under section 3(a) of the
5 United States illousing Act of 1937 (42
6 U.S.C. 1437a(a)) by a lower income family
7 (as the term is defined in section 3(b)(2) of
8 such Act (42 U.S.C. 1437a(b)(2))) for a
9 dwelling unit assisted under such Act.
10 (ii) For any resident that is not a lower-
11 income resident, an amount based on a for-
12 mula, which shall be determined by the Sec-
13 retary, under which rent is determined by
14 the income and resources of the resident.
15 (C) FEEs.-Fees may be charged for any
16 services provided under subsection (e)(2) to resi-
17 dents of a community residence, except that any
18 fees charged shall be based on the income and re-
19 sources of the resident and the provision of serv-
20 ices to any resident of a community residence may
21 not be withheld because of an inability of the resi-
22 dent to pay such fee.
23 (ID) SECTION 8 ASSISTANCE.-Assistance
24 made available under section 8 of the United
25 States Housing Act of 1937 (42 U.S.C. 14370
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25
1 may be used in conjunction with a community res-
2 idence under this subsection.
3 (2) SERvICEs.-Services provided with a grant
4 under this section shall consist of services-appropriate
5 in assisting individuals with acquired immunodeficiency
6 syndrome and related diseases to enhance their quality
7 of life, enable such individuals to more fully participate
8 in community life, and delay or prevent the placement
9 of such individuals in hospitals or other institutions.
10 (c) ELIGIBILITY FOR GRANTS.-
11 (1) GENERAL PROPOSAL.-TO be eligible to re-
12 ceive a grant under this Act, a State or metropolitan
13 area shall submit to the Secretary a written proposal
14 describing the use of the grant, as the Secretary shall
15 require, which shall include the following:
16 (A) A description of the objectives of the pro-
17 gram to provide assistance through a community
18 residence or services provided under this section
19 and the intended use of the grant amounts re-
20 ceived during the fiscal year.
21 (B) A description of the benefits and benefici-
22 aries of the assistance provided with grant
23 amounts and the method by which the jurisdiction
24 will evaluate the effectiveness of the activities.
eIlIR 3423 III
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26
1' (C) A description of any public or private or-
2 ganizations or entities that will participate in pro-
3 viding services under subsection (e)(2) and the
4 extent and nature of the participation.
5 (D) A description of the program for quality
6 assurance under subsection (g)(5).
7 (2) ArDITIONAI~ PROPOSAL FOR METROPOLITAN
8 AREAS.-Ifl addition to the requirements of paragraph
9 (1), to be eligible for a grant to a metropolitan area
10 under this section, the major city, urban county, and
11 any city with a population of 50,000 or more in the
12 metropolitan area shall establish or designate a govern-
13 mental agency or organization for receipt and use of
14 amounts received from a grant under this section and
15 shall submit to the Secretary, together with the pro-
16 posal under paragraph (1), a proposal for the operation
17 of such agency or organization.
18 (3) PRELIMINARY CERTIFICATION AND MINORITY
19 ASSISTANCE.-To be eligible to receive a grant under
20 this section, a jurisdiction shall certify to the Secretary,
21 as the Secretary shall require, that the amounts re-
22 ceived under the grant will be used and administered in
23 accordance with this section and any regulations and
24 terms that the Secretary may establish and that the ju-
25 risdiction will provide a reasonable amount of assist-
*IIR 3423 III
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27
1 ance under this section, in the determination of the
2 Secretary, in communities in which the residents are
3 predominantly members of minority groups.
4 (d) AWARD OF GRANTs.-To the extent that amounts
5 are provided in appropriations Acts under subsection (m), the
6 Secretary may approve the proposals under subsection (c) of
7 eligible jurisdictions and make grants to the eligible jurisdic-
8 tions. Grants to metropolitan areas shall be made to the gov-
9 ernmental agency or organization designated under the pro-
10 posal under subsection (c)(2) for receipt and use of the grant
11 amounts. Grants shall be made under this subsection unless
12 the Secretary makes any of the following determinations:
13 (1) LAcK OF cApAcITy.-That the jurisdiction or
14 the government agency or organization designated
15 under the proposal under subsection (c)(2) lacks the ca-
16 pacity to administer the grant amounts in a timely or
17 adequate manner.
18 (2) INsUFFICIENT PROPOSAL.-That the proposal
19 of the jurisdiction under subsection (c)(1) (or the addi-
20 tional proposal of a metropolitan area under subsection
21 (c)(2)) fails, in the determination of the Secretary, to
22 provide for the appropriate administration of amounts
23 under this section or the establishment and operation of
24 a community residence or provision of services, as ap-
eIIR 3423 III
PAGENO="0114"
propriate, under this section or other applicable laws or
regulations.
(e) USE OF GR~NTS.-Any amounts received from a
grant~under-this sectionmay be used oiily as follows:
(1) COMMUNITY RESIDENCES.-For providing as-
sistance in connection with community residences
under subsection (b)(1) for the following activities:
(A) PHYSICAL IMPROVEMENTS.-Construc-
tion, acquisition, rehabilitation, conversion, retro-
fitting, and other physical improvements necessary
to make a structure suitable for use as a commu-
nity residence.
(B) OPERATING COSTS.-Operating costs for
a community residence.
(C) TECHNICAL ASSISTANCE.-Technical
assistance in establishing and operating a commu-
nity residence, which may include planning and
other predevelopment or preconstruction expenses.
(D) IN-HOUSE SERVICES.-Services appro-
priate for individuals residing in a community resi-
dence, which may include staff training and
recruitment.
(2) SERVICES.-FOr providing services under sub-
section (b)(2) to any individuals assisted under this
title.
110
28
1
2
3
4
5
6
7
8
9
10
11
12
13
14
15
16
17
18
19
20
21
22
23
24
25
*HR 3423 III
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29
1 (3) ADMINISTRATIVE ExPENSE5.-For adminis-
2 trative expenses related to the planning and execution
3 of activities under this section, except that a jurisdic-
4 tion that receives a grant under this section may
5 expend not more than 10 percent of the amount re-
6 ceived under the grant for such administrative cx-
7 penses. Administrative expenses under this paragraph
8 may include expenses relating to community outreach
9 and educational activities regarding acquired immuno-
10 deficiency syndrome and related diseases, ~for staff car-
11 rying out activities assisted with a grant under this
12 section and for individuals who reside in proximity of
13 individuals assisted under this title.
14 (f) LIMITATIONS ON USE OF GRANTS.-
15 (1) COMMIJNITY RESIDENCES.-Any jurisdiction
16 that receives a grant under this section may not use
17 any amounts received under the grant for the purposes
18 under subsection (e)(1), except for planning and other
19 expenses preliminary to construction or other physical
20 improvement under subsection (e)(1)(A), unless the ju-
21 risdiction certifies to the Secretary, as the Secretary
22 shall require, the following:
23 (A) SERVICE AGREEMENT.-That the juris-
24 diction has entered into a written agreement with
25 service providers qualified to deliver any services
*BIR 3423 III
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30
1 included in the proposal under subsection (c) to
2 provide such services to individuals assisted by
3 the community residence.
4 (B) FUNDING AND CAPABILITY.-That the
5 jurisdiction has acquired sufficient funding for such
6 services and the service providers are qualified to
7 assist individuals with acquired hnmunodeficiency
8 syndrome and related diseases.
9 (0) ZONING AND BUILDING CODES.-That
10 any construction or physical improvements carried
11 out with amounts received from the grant will
12 comply with any applicable State and local hous-
13 ing codes and licensing requirements in the juris-
14 diction in which the building or structure is
15 located.
16 (ID) INTENSIVE ASSISTANCE.-That, for any
17 individual who resides in a community residence
18 assisted under the grant and who requires more
19 intensive care than can be provided by the com-
20 munity residence, the jurisdiction will locate for
21 and refer the individual to a service provider who
22 can appropriately care for the individual.
23 (2) SERVICES.-Any jurisdiction that receives a
24 grant under this section may use any amounts received
25 under the grant for the purposes under subsection (e)(2)
*HIR 3423 ifi
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31
1 only for the provision of services by service providers
2 qualified to provide such services to individuals with
3 acquired immunodeficiency syndrome and related
4 diseases.
5 (g) GRANT REQUIREMENTS.-
6 (1) NON-FEDERAL SHARE.-Each jurisdiction
7 that receives a grant under this section shall make
8 available for use for the activities contained in the pro-
9 posal under subsection (c) an amount from non-Federal
10 sources equal to not less than 25 percent of the
11 amount received from the grant under this section.
12 Non-Federal contributions under this paragraph may be
13 in cash or in kind, and may include the value of any
14 donated building, land, material, services, personnel, or
15 equipment or lease on a building.
16 (2) PR0mBITION OF SUBSTITUTION OF FUNDS.-
17 Amounts received from grants under this section may
18 not be used to replace other amounts made available or
19 designated by State or local governments for use for
20 the purposes under this section.
21 (3) RECORDKEEPING.-Each jurisdiction that re-
22 ceives a grant under this section shall maintain and
23 provide the Secretary with financial records sufficient,
24 in the determination of the Secretary, to ensure proper
25 accounting and disbursing of amounts received from the
OUR 3423 IH
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32
1 grant and administration of such amounts in an effi-
2 cient and cost-effective manner.
3 (4) CONFIDENTIALITY.-Each jurisdiction that
4 receives a grant under this section shall maintain the
5 confidentiality of the name of any individual assisted
6 with amounts from a grant under this section and any
7 other information relating to assistance provided from a
8 grant under this section.
9 (5) QUALITY ASSURANOE.-Each jurisdiction that
10 receives a grant under this section shall carry out a
11 program, with respect to the ongoing operation of the
12 community residences and services provided under the
13 grant, to ensure the quality and accessibility of such
14 assistance.
15 (6) REP0RTs.-Each jurisdiction that receives a
16 grant under this section shall submit to the Secretary,
17 not later than the expiration of the 6-month period
18 after the award of a grant under this section and annu-
19 ally thereafter for any year in which amounts from a
20 grant under this section are expended, a report describ-
21 ing the use of any amounts received from a grant
22 under this section, which shall include a description of
23 the beneficiaries of the assistance provided with grant
24 amounts, an evaluation of the activities carried out
25 with such amounts in comparison to the activities pro-
*IHt 3423 III
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33
1 posed to be carried out with the amounts in the pro-
2 posal under subsection (c), and any other information
3 that the Secretary considers appropriate.
4 (h) ALLOOATION.-The Secretary shall allocate
5 amounts under this section as follows:
6 (1) METROPOLITAN AREA GOVERNMENTS.-Of
7 the amount provided in any appropriation Act under
8 subsection (m) for grants in any year, 75 percent of the
9 amount not allocated under paragraph (4) shall be allo-
10 cated by the Secretary to metropolitan areas. The See-
11 retary shall determine the amount to be allocated to
12 each metropolitan area eligible under subsection (c) on
13 the basis of the incidence of acquired immunodeficiency
14 syndrome or related diseases in the jurisdiction in com-
15 parison with the incidence in other jurisdictions (as de-
16 termined by the Centers for Disease Control of the
17 Public Health Service, Department of Health and
18 Human Services) and other factors that the Secretary
19 determines are appropriate.
20 (2) STATES.-Of the amount provided in any ap-
21 propriation Act under subsection (m) for grants in any
22 year, 25 percent of the amount not allocated under
23 paragraph (4) shall be allocated by the Secretary
24 among the States as follows:
*IiR 3423 Ui
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34
1 (A) IN GENERAIJ.-The Secretary shall de-
2 termine the amount to be allocated to each State
3 eligible under subsection (c) on the basis of the in-
4 cidence of acquired immunodeficiency syndrome or
5 : related diseases in the State in comparison with
6 the incidence in other States (as determined by
7 the Centers for Disease Control of the Public
8 Health Service, Department of Health and
9 Human Services) and other faetors. that the Secre-
10 tary determines are appropriate.
11 (B) MINIMUM AMOUNT.-Subject only to the
12 availability of amounts pursuant to appropriation
13 Acts under subsection (m), for each fiscal year
14 each State shall receive at least $200,000 in
15 grants under this section. If allocation under sub-
16 paragraph (A) would allocate less than $200,000
17 for any State, the allocation for such State shall
18 be $200,000 and the amount of the increase
19 under this sentence shall be deducted on a pro
20 rata basis from the allocations of the other States,
21 except that a reduction under this subparagraph
22 may not reduce the amount allocated to any State
23 to less than $200,000.
24 (3) REALLOCATION.-
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35
1 (A) IN GENERAL.-The Secretary shall, pe-
2 riodically throughout each fiscal year and accord-
3 ing to this paragraph, reallocate any amounts pro-
4 vided in grants under this section that have not
5 been used' or committed for use by the State or
6 metropolitan area receiving the grant. The Secre-
7 tary shall establish procedures for timely use and
8 commitment of amounts and reallocation under
9 this paragraph.
10 (B) METROPOLITAN AREA GRANTS.-Any
11 amounts from grants to metropolitan areas that
12 are reallocated under this paragraph shall be real-
13 located to the State in which the metropolitan
14 area subject to the reallocation is located. The
15 State shall distribute the amounts to nonprofit or-
16 ganizations in the metropolitan area subject to the
17 reallocation to carry out the purposes of this
18 section.
19 (C) STATE GRANTS.-Any amounts from
20 grants to States that are reallocated under this
21 ` paragraph shall be reallocated to metropolitan
22 areas in the State subject to the reallocation for
23 use by the metropolitan areas to carry out the
24 purposes of this section.
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36
1 (4) ALLOCATION TO TERRITORIES.-In ~dthtion
2 to the other allocations required under this subsection,
3 the Secretary shall allocate amounts appropriated
4 under subsection (m) to Indian tribes, the Virgin Is-
5 lands, Guam, American Samoa, the Commonwealth of
6 the Northern Mariana Islands, the Trust Territory of
7 the Pacific Islands,. itnd any other territory or posses-
8 sion of the United States, in accordance with an alloca-
9 tion formula established by the Secretary.
10 (i) MONITORING.-The Secretary shall provide for on-
11 going monitoring of community residences and services as-
12 sisted under this section to ensure that any amounts provided
13 under this section are used in conformity with this section,
14 the certifications made by the jurisdiction under subsection
15 (c)(3), and the proposal approved by the Secretary under sub-
16 section (d). Monitoring under this subsection shall include
17 periodic on-site inspections of community residences and in-
18 person observation of the provision of services.
19 (j) REPORT TO CONGRESS.-FOr any fiscal year that
20 the Secretary makes grants under this section, the Secretary
21 shall submit to the Congress, not later than the first January
22 10 occurring after such fiscal year, a report describing the
23 use of any amounts received from a grant under this section,
24 the costs of any community residences and services provided
25 with grant amounts, an evaluation of the effectiveness of the
OIIR 3423 III
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37
1 various activities conducted with grants under this section,
2 and any recommendations for preventing homelessness
3 among individuals with acquired immunodeficiency syndrome
4 or related diseases and meeting the needs of homeless mdi-
5 viduals with acquired iinmunodeficiency syndrome or related
6 diseases.
7 (k) DEFINITI0Ns.-IFor purposes of this section:
8 (1) CoMMUNITY RESIDENOE.-The term "com-
9 munity residence" means a community residence under
10 subsection (b)(1) established by a jurisdiction with a
11 grant under this section.
12 (2) ELIGIBLE JTJRIsDIOTI0N.-The term "eligible
13 jurisdiction" means a jurisdiction eligible under subsec-
14 tion (c) to receive a grant under this section.
15 (3) INDIAN TRIBE.-The term "Indian tribe"
16 means any Indian tribe, band, group, and nation, in-
17 cluding Alaska Indians, Aleuts, and Eskimos, and any
18 Alaska Native Village, of the United States, which is
19 considered an eligible recipient under the Indian Self-
20 Determination and Education Assistance Act (25
21 U.S.C. 450f et seq.) or was considered an eligible re-
22 cipient under chapter 67 of title 31, United States
23 Code, prior to the repeal of such chapter.
24 (4) JURISDICTION.-The term "jurisdiction"
25 means a State or metropolitan area.
*}IIR 3423 III
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38
1 (5) METROPOLITAN AREA.-The term "metropol-
2 itan area" means any metropolitan statistical area as
3 established by the Office of Management and Budget,
4 and includes the District of Columbia.
5 (6) STATE.-The term "State" means the States
6 of the United States and the Commonwealth of Puerto
7 Rico.
8 (7) URBAN OOUNTY.-The term "urban county"
9 means any county within a metropolitan area which
10 has a population-
11 (A) of 200,000 or more (excluding the popu-
12 lation of cities therein with a population of 50,000
13 or more) and has a combined population of
14 100,000 or more (excluding the population of
15 cities therein with a population of 50,000 or
16 more) in such unincorporated areas and in its in-
17 cluded units of general local government; or
18 (B) in excess of 100,000, a population densi-
19 ty of at least 5,000~persons per square mile, and
20 contains within its boundaries no incorporated
21 places as defined by the United States Bureau of
22 the Census.
23 (1) REGULATIONS.-The Secretary shall issue any regu-
24 lations necessary to carry out this Act.
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39
1 (m) AuTHoRIzATIoN OF APPROPRIATIONS.-There
2 are authorized to be appropriated to carry out this section
3 $135,000,000 for each of fiscal years 1990 and 1991. Any
4 amounts appropriated pursuant to this subsection shall
5 remain available until expended.
6 SEC. 305. AIDS AS HANDICAP FOR PURPOSES OF HOUSING AS-
7 SISTANCE.
8 (a) IN GENERAL.-Any individual with the disease of
9 acquired immunodeficiency syndrome or any condition arising
10 from the etiologic agent for acquired immunodeficiency syn-
11 drome, including the disease known as AIDS-related corn-
12 plex (but not including any condition of asymptomatic infec-
13 tion with the etiologic agent for acquired immunodeficiency
14 syndrome), shall be considered handicapped or disabled for
15 the purposes of eligibility or qualification for any housing as-
16 sistance administered by the Secretary of Housing and Urban
17 Development, including any grant, loan, subsidy, guarantee,
18 insurance, or other assistance, for handicapped or disabled
19 families or individuals.
20 SEC. 306. RESERVATION OF ASSISTANCE FOR INDIVIDUALS
21 WITH AIDS.
22 (a) SECTION 8.-Section 8 of the United States bus-
23 ing Act of 1937 (42 U.S.C. 14370 is amended by inserting
24 after subsection (k) the following new subsection:
ØIIR 3423 ifi
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40
1 "(1) The Secretary shall permit any public housing
2 agency to reserve assistance under subsections (b) and (o), as
3 the public housing agency determines appropriate, for mdi-
4 viduals with the disease of acquired immunodeficiency syn-
5 drome or any condition arising from the etiologic agent for
6 acquired immunodeficiency syndrome, including the disease
7 known as AIDS-related complex (but not including any con-
8 dition of asymptomatic infection with the etiologic agent for
9 acquired immunodeficiency syndrome).".
10 (b) PUBLIC HousING.-Section 6 of the United States
11 Housing Act of 1937 (42 U.S.C. 1437d) is amended by
12 adding at the end the following new subsection:
13 "(n) The Secretary shall permit any public housing
14 agency to reserve units in a public housing project and to
15 reserve assistance under this Act for public housing, as the
16 public housing agency determines appropriate, for individuals
17 with the disease of acquired immunodeficiency syndrome or
18 any condition arising from the etiologic agent for acquired
19 immunodeficiency syndrome, including the disease known as
20 AIDS-related complex (but not including any condition of
21 asymptomatic infection with the etiologic agent for acquired
22 immunodeficiency syndrome).".
0
*llR 3423 III
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STJ~XART OFH.R. 3423
AIDS lEG OPPORTUNITIES ACT
H * R. 3423, introduced by Representatives Jim McDermott (Wash.), Nancy
Pelosi (Calif.), and Charles Schumer (N.Y.), would authorise $290
million to expand housing options for people living with AIDS and
related illnesses. The proposal was designed to prevent homelessness,
provide residential alternatives to costly hospital care, and to
enhance the quality of life of persons living with AIDS. The bill has
been referred to the House Banking, flnance and Urban Affairs
Committee.
S HOUSING INFORMATION AND COORD~$~TION SERVICES
Public or nonprofit organizations could apply for grants to carry out
two activities: 1) Providing information, counseling, and referrals
directly to persons living with AIDS in need of housing assistance;
and 2) Developing and coordinating efforts in local communities to
increase housing resources appropriate to persons living with AIDS.
$5 million would be authorized in 1990 and 1991.
DEMONSTRATION PRJECTS TO PREVENT HQMEI1ESSNESS AND FOR SEORT.TRRM
SUPPORTED HOUSING FOR, HOMELESS PERSONS L~VING WITS AIDS
Grant funds would be used by public or nonprofit organizations to
prevent homelessfless by helping to pay rent, mortgage or utility
payments to avoid eviction or foreclosure. Funds would also be used
to establish and operate model short-term housing projects with
appropriate services for homeless persons living with AIDS. Service
providers would be obligated to make their best effort to locate more
appropriate and permanent living environment for each individual
assisted. $15 million would be authorized in 1990 and 1991.
PERMANENT SOUSING FOR PERSONS LIVING WITH AIDS
~ S~ction 8 Existing Housing Assistance: This already-existing
program helps pay rent for low-income tenants -- individuals pay
no more than 30% of their income towards rent and HUD covers the
rest. This proposal would fund about 3,000 additional section 8
certificates for use by persons living with AIDS. $100 million
is authorized in 1990 and 1991.
* )!cltinney Act Section 8 Single Room Occupancy (SRO) Dwellingsj
This program, orginally created by the I4cxinney Homeless
Assistance Act, provides rent subsidies in newly renovated SRO
apartments -- units lacking individual bathrooms or kitchens.
These are very cost-effective housing units and would be linked
directly to appropriate services for persons living with AIDS.
$35 million would be authorized in 1990 and 1991.
* Community Residences: Each State and every metropolitan area
~I~W more than 5 oó7O'~o population would. be given a grant to
develop and operate permanent housing and appropriate services
for people living with AIDS; 25% of all funds would be reserved
for States; 75% for localities. The State or locality, which
would be required to provide a 25% match, could pass the money
through to nonprofiti. $135 million would be authorized in 1990
and 1991.
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JIM McDERMOTT ELECTED REGIONAL WHIP
BANKING. FINANCE AND URBAN
con~r~.~ of t~j~ ~niteb ~tate~ ~
~ou~t of ~tprc~entattbe~
~a~in~ton, ~qc 20515 INTEGOR AND INSULAR AFFAIRS
-, DISTRICT OF COLUMBIA
OPENING STATEMENT OF
CONGRESSMAN JIM MCDERMOTT
SUBCOMMITTEE ON HOUSING AND COMMUNITY DEVELOPMMNT
HEARING ON THE HOUSING NEEDS OF PERSONS WITH AIDS
MARCH 21, 1990
Thank you, Mr. Chairman, for holding this hearing today on the
housing needs of people with AIDS. The tragedy of AIDS has touched us
all in one way or another -- and it has presented a special challenge
for the people in our hometowns caring for those suffering from this
tragic epidemic. All over the country, communities are confronting
the lack of affordable housing for people with~AIDS and stretching
precious resources to begin to address this problem.
Seattle has been in the forefront of this effort. In Seattle we
are slowly raising the money to construct a 35-bed facility for those
most in need of care. There are currently over 1200 people living
with AIDS in Seattle-King County and, by 1992, this number will more
than double. This dramatic increase will strain existing services.
More than 114,000 cases of AIDS have been diagnosed in the last
nine years. Today 44,000 Americans are living and coping with this
very costly disease which soon leaves many impoverished. Some of
these people have families and friends to take them in. Many others
do not.
These people are faced with essentially two choices -- to live in
a hospital bed or live on the streets. We are here today to discuss
these choices and, hopefully, to expand the housing options available
to homeless people with AIDS.
Providing housing assistance is not only more humane, it is cost
effective. It does not make any sense to me to spend $650 a day to
keep a person with AIDS confined to a hospital bed when we could be
spending as little as $50 a day to provide them with housing and let
them live independently. These are our two choices.
Last fall my colleagues Ms. Pelosi, Mr. Schumer and I introduced
legislation to expand housing options for people with AIDS. Our
proposal provides short-term assistance to prevent homelessness and
earmarks new Section Eight certificates to help persons with AIDS stay
in their own homes. It also expands the McKinney SRO program and helps
localities build community residences like the one in Seattle.
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125
-2-
`I commend you, Mr. Chairman, for bringing in people from all over
the country who confront this issue every day: people with AIDS who
understand what it means to fear life on the streets; representatives
of the medical community who are forced to keep homeless people with
AIDS in hospital beds when they are strong enough to live on their
own; and service providers who see this problem escalating -- forcing
them to try and find shelter for at least 30,000 homeless people with
AIDS and their dependents.
This estimate of 30,000 homeless people is bound to grow because
this disease is rapidly gaining on us. Up until 1987, 50,000 total
AIDS cases were reported, but in the last 18 months another 50,000
people have come down with the disease. And we are expecting another
50,000 to be reported just this year. Our hospitals cannot support
that burden. Our homeless shelters cannot either.
Conservative estimates put the amount of people infected with HIV
at one million. The CDC tells us that at least another 179,000 of
these people will develop full-blown AIDS before the end of 1992 and
the number of new cases will continue to rise annually after that.
All of these statistics mean one thing -- this problem is big and it
is going to get much, much bigger.
Mr. Chairman, the issue of providing housing.for people with AIDS
is a new one for the Congress, but let me emphasize that urgent action
is needed. Persons living with AIDS cannot wait for new housing to be
built or subsidized housing to become available. They~ need help now.
I look forward to hearing from our witnesses.
###
27-986 0 - 90 - 5
PAGENO="0130"
126
Testinxny Before the
Subcarmittee on Honsing and Coimminity I~ve1opi~nt
of the
Camnittee on Banking, Finance, and Urban Affairs
by
Congresm~n William E. t~nn~yer (R-~A)
Mard 21, 1990
Thank you, Mr. Cc~airman, for the opportunity to testify before the
Housing Subco~mnittee regarding the critical subject of caring for victims of
AIDS.
As you are aware, I have been deeply interested in the issue of MDS
ever since it was brought to the attention of the Health and Environment
Subcorrrnittee many years ago. I have watched the congressional expenditure
to fund AIDS research and education grow from a few million dollars to now
over one billion dollars. This year we are scheduled to expend 1.2 billion
dollars to stop the spread of this deadly, and all too tragic, disease --
approximately $800 million for research and $400 million for education.
I have long been an advocate of hospice care for victims of AIDS. The
hospice setting can provide victims with the personal attention required by
the terminally ill which cannot be successfully replicated in large, im.ilti-
dimensional hospitals.
I have learned a great deal as I have personally investigated the
availability and quality of hospice care for victims of~IDS. Nowhere have
I been better educated on the subject than by ~ AIDS hospice
of the aptly named Beyond Bejection Ministries in tong Beach, California.
Many victims of AIDS are beyond rejection, beyond the limited resources and
limited eiptions of various medical facilities.
The valiant people who care for victims of AIDS are all to be cotimended
and thanked for their coapassionate service. But words are often not
enough. One step inside mest AIDS hospices will educate even the
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127
disinterested among us that more than words are needed to help relieve the
suffering which stares you in the face.
Jim Johnson is founder of Beyond Rejection Ministries and director of
its two AIDS hospices. He has struggled over the last few years to provide
quality care to his clients. Most of these clients have been male
homosexuals, homeless and pennyless as the ravages of the disease have taken
their economic toll.
My friend Jim Johnson has experienced the reality of AIDS hospice care
firsthand. He knows its economics, its emotions, and, unfortunately, its
politics. Tragedy heaped upon tragedy is the best way to describe how the
politics of AIDS can stifle the good works and corr~assion of people who want
no more than to care for the dying.
Based on the experiences I have gleaned over the years from my
involvement on this issue and my firsthand observations of AIDS hospices,
let me make a few suggestions as to how Congress might proceed to help
victims of AIDS.
The first and most effective way to help victims of AIDS is to help the
uninfected stay that way. The best way to do this, in my opinion, is to
introduce accountability into the AIDS health care systes. All federal
programs designed to address the problam of AIDS should mandate local,
confidential reporting of HIV infection and follow-up contact tracing as a
prerequisite for states to receive funds. H.R. 3423 should include this
provision as well.
Indeed, the voice of organized medicine in America, the American
Medical Association (AMA), voted overwhelmingly at its latest convention in
Hawaii last December to endorse mandatory, confidential reporting of HIV and
contact tracing. Congress has listened to the voice of the AMA for years
now on this subject and there is no reason to quit listening.
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128
Second, clients who stay in hospices should be allowed to endure and
die in dignity. Victims of AIDS need emotional room to cope with their
terminal situations. The months and weeks before an inevitable death are a
time for inner healing, both enotional and spiritual. The last thing that
these individuals need reinforced in their lives are the tragic
circumstances which led to the demise of their health.
Let's remember that when we speak of hospice care for victims of AIDS
we are not taking about incidental care for asyrrptomatic carriers of the
virus, individuals who are free to move about and do as they wish. Hospice
care is serious care for the dying. Introspection demands a separation of
the patient from the behaviors and circumstances which transmitted the
disease.
The rules at Beyond Rejection Ministries are no illicit drugs,
homosexual sex, or sex of any kind among patients or visitors and patients.
Congressional stewardship over tax dollars should affirm these principles in
H.R. 3423.
Third, local coinnunities should have the discretion to determine zoning
laws surrounding the operation of hospices. The efficacy of such
discretionary powers is obvious. A successful hospice will need the support
of the comsunity where it resides. Hospices for victims of AIDS should be
given every chance for survival. I have read the bill and it is unclear as
to how H.R. 3423 will affect local zoning laws. We should work with local
corerunities.
My last point is a fiscal concern. Many of our colleagues will be much
more inclined to support this bill if its spending authority is derived from
an existing source. The $1.2 billion being spent this year on AIDS ~u1d be
a good place to go to look for the money you need.
Mr. Chairman, thank you for letting me take this time to share my
views.
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129
Mr. Chairman, my name is John Page Overrocker and I am here
to tell you what it is like to have HIV infection.
You always believe that the worst can never happen to you.
That you're above all that. Well, late in December 1987 I found
myself in the very worse possible situation imaginable. I was
homeless;. I was without friends; I was- without money, without
resources; I was ill, suffering from HIV infection in a strange
city where I did not know anyone, did not even know the lay of the
land or how to get help or where to go. They would not help me.
I went to Travelers Aid. They were closed. Finally, out of
desperation, I begged enough money for a phone call to a Gay hot
line. They informed me that there was a place in Washington called
the Whitman-Walker Clinic that helped people that were in my
condition.
I begged more money for .another phone call. Only to find out
that the Clinic was closed for the holidays, and would not open
again till the first week in January. So somehow I waited for four
days, and made yet another phone call. I talked to a man on the
phone who has since become my close friend. The only words of
encouragement and hope, after months of falling into an ever
darkening whole of despair and destitution, came from that man.
His name is Bill Ceyrolles. He told me to come to the Clinic and
that we would talk and try to straighten everything out.
J was very confused, very ill, both mentally and physically.
PAGENO="0134"
130
This disease sometimes attacks your brain and there are periods in
time where confusion reigns supreme and nothing can get in to
straighten it out. This was happening to me on a regular basis,
but Mr. Bill, as I have come to call him, and the Whitman-Walker
Clinic really made all the difference in the world. It started
with just a cup of coffee and a friendly talk. At the Clinic, on
that first day, without hesitation, Mr. Bill was able to make a
doctors appointment to confirm that I was suffering from HIV
infection, and to what degree. During the next few weeks, I was
seen by a physician at the Clinic six times. Besides physical
examinations, I was given laboratory tests and was counseled about
my disease so that I could understand it better and learn to take
care of myself better.
But there were other things, more immediate things, that
needed to be attended to. I had no clothes, indeed, I didn't even
have my teeth. My dentures had been lost during this ordeal. Well
within a couple of days Mr. Bill had warm sweaters and clothes for
me to wear. He was able to secure a bed in the medical section of
Mitch Snyder's Center for Creative Non-violence. I stayed there
for approximately a month. During that time, I was a regular daily
visitor to the Clinic. It gave me a place to go, something to
focus on, something to look forward to. It kept me of f the streets,
out of the cold, and I was meeting some very nice people.
My legal matters were all tended to by the Whitman-Walker
legal department at no charge. Application was made to Whitman-
PAGENO="0135"
131
Walker Clinicts housing program. I was accepted, thank God, and
was put into a house. I still had no visible means of support.
At this point I was unable to hold a job in my regular profession,
as .a chef. I could no longer function, at least not up to the
performance that any hotel or restaurant would expect. Financial
support still continued through the Clinic.
Shortly.after being. assigned to~the house, the~next day, as
a matter of fact, there. was a phone~ call from a young man who
wanted to be my buddy, another ~prcgram provided through the
Whitman-Walker Clinic. A buddy is~- a~friend, a~ friend to help, a
friend to talk to. I was learning valuable lessons at the Clinic.
Up until now I had been trying to do all this on my own, not tell
anyone that I was ill, and still continue with a normal daily life
style. An impossible task at best, more difficult that even I
realized.
The food bank was also made available to me, another program
funded by the Whitman-Walker Clinic. It allows people with AIDS,
on minimal income, to go and supplement their shopping needs at no
charge. An endless stream of programs have been available to me
through the Clinic. From Medical, to housing, to food, financial,
legal, and last but not least dental. I was in need of a set of
dentures, rather expensive these days. However, the Clinic
arranged that it could be done. They also paid the bill, amounting
to I believe $400.00, through an AIDS Foundation grant.
PAGENO="0136"
132
Since those dark days back in December of `87, I've come a
long way. And none of it, absolutely none of it, could have been
possible if it not been for the Whitman-Walker clinic and their
fine, fine staff. Overtaxed and over-burdened at the most, they
still try to offer all these services to more than 700 people with
AIDS at any given time. From the food bank, where I have
volunteered my time, we handle 150 clients that are shopping on a
regular basis. The dental clinic has seen well over 300 patients
on a regular basis by one part-time dentist. The housing services
can accommodate up to 45 people, not nearly enough, but it is a
start. Medical services provides care to over 1000 HIV infected
people per year. The aerosolized pentamidine clinic is now
treating over 100 people.
And still they keep coming. There seems to be no end to this,
but I know somewhere down the line there will be. Resources of
places like Whitman-Walker are stretched to the limit. There is
only so much volunteer time and money which can be raised from an
already beleaguered community. What is needed now is financial
support, so that these services can continue to be offered on a
regular basis to the people who need it, the people who desire it,
and the people who in some cases can't ask for it or don't know
how. For instance, the little babies who have lived in one of the
houses with their mothers. Housing is all supplied by the clinic
at a small charge, if any at all. Support services are there, and
as always, continues to be there, even if its just someone to talk
to. I still go and talk with my friend, Mr. Bill, on a regular
PAGENO="0137"
133
basis. My buddy has been there whenever I have needed him. He
doesn't get paid for that; he just doesn't want it to happen to
anybody else. The friends I have met through the Clinic, some of
which have since passed away, have all benefited greatly, and will
continue to do so.
Recently, this past month, a book was released. It is titled
"Epitaphs for the Living" and is a photographic essay of people
with AIDS. I would like to include in my closing remarks, a quote
from the book. Simply it says "You've got. to let go of the past,
hold on dearly to the present, and never be afraid to dream of a
future". That young man is me arid continues to be me.
Thank you.
PAGENO="0138"
134
Ms. April Jarrels
"DOLLY"
TO THE
UNITED STATES HOUSE OF REPRESENTATIVES
BANEING, FINANCE AND URBAN AFFAIRS COMMITTEE
SUBCOMMITTEE ON HOUSING AND COMMUNITY DEVELOPMENT
HEARINGS ON HOMELESSNESS AND AIDS
MARCH 21, 1990
PAGENO="0139"
135
1
Good morning. My name is "Dolly". I live in Birmingham,
Alabama. I am currently homeless, and I am infected with HIV.
don't know how I got the virus. I never shot drugs. My mind is
too rich for that. I am here today because, even though I am
homeless, I don't want to be treated like a dog on the street.
I am twenty seven years old. Until a month ago, I lived
with my family, and I made my living as a cook in a convenience
store. I also attended Southern Junior College, where I was
studying to be a nursing assistant. Today I have no job. I have
had to drop out of school. And for the next week or so I have a
bed at the Pickens Respite Center, a temporary care facility for
homeless people with AIDS.
Actually, I grew up in New Jersey. But four years ago I got
a call from my daddy, who told me my grandmother was very sick.
He asked me to come down South to take care of her. So I packed
my bags and moved to Birmingham. I took care of my grandmother
for about six months. After my grandmother passed, I decided to
stay in Birmingham. So I got a job as a cook and settled in with
my family.
In July, 1988, I noticed my older brother, Willie, had
started getting sick. His eyes yellowed, and he started losing
PAGENO="0140"
136
2
weight for no reason until his eyes looked like they were shrunk
back in his head. We thought he must have hepatitis or yellow
jaundice. He started going to the clinic, but when he came home
he would never tell us what was wrong. Instead hu would just
say things like, "That doctor ain't telling me nothing."
Finally one day last June me and my daddy decided to go with
my brother to the clinic. When we got there, I started being
nosey and went to the examining room where his medical chart was
hanging on the door. I read it, and it read that he had AIDS.
When I told my father, he started crying. Then the doctor came,
thinking we already knew about Willie's condition. He told us
Willie would have to go in the hospital because he had a seizure.
He also had tuberculosis and pneumonia.
Willie stayed in the hospital for about two and a half
months. My uncle went a brought him home. In the hospital he
had had a stroke, and his right side was paralyzed all the way
down. I asked him why he had never told us he had AIDS. He said
he was afraid we would turn our backs on him and have nothing to
do with him. I told him, "No, we wouldn't turn our backs on you.
We're here for you, and we'll always be here for you."
Willie couldn't take his medicine by himself. He had a
catheter in his chest. The nurse showed us how to insert a
needle in the catheter, but everybody was too nervous to do it
PAGENO="0141"
137
3
right. So I used to give him his injections and took care of
him. Later the fluid on his brain got worse, and he turned mean.
I used to fuss back at him, but he didn't mean any harm, he was
just in so much pain.
The visiting nurse told the family of another man who had
AIDS how good I was at taking care of my brother. So they hired
my to sit with their son. He was a famous musician from New
York. We used to sit and talk, and sometimes he would sit up and
play the piano. One night I was passing by his house, and I saw
an ambulance outside. I called his parents, and his mother told
me he had passed on.
After that, I decided I wanted to become a nursing
assistant, so I enrolled in college. My brother was doing fine
for a while, but then he got worse. He didn't want to take his
medicine anymore, because he said the medicine was what was
making him sick. His head was always hurting, and he lost his
appetite. I got tired to the point where I couldn't take it any
more. I'd give him his medication when it was needed, but I gave
up fussing with~him. Finally, on March six of this year he
passed.
On February nineteenth, I was admitted into the hospital
with pains in my left side. The doctors told me my kidneys and
bladder were infected. They asked me to sign a paper for a
PAGENO="0142"
138
4
spinal tap. `Later they told me I had also signed to take the
AIDS test. On March sixth I got my spinal tap. That afternoon
three men and a woman came into my room. They told me my kidneys
were doing fine, but that my other test results had come back
positive. I thought they were going to tell me I was pregnant.
But then the doctor told me that being positive meant that I had
AIDS.
Later that same afternoon, I called my daddy to tell him to
come to the hospital so I could tell him to his face. When I got
him on the phone, he was crying. I asked him what was wrong, and
he told me Willie had passed. Imagine how I felt getting both
bad news in one day.
The day of my brother's funeral, my aunt told me, "You're
always welcome here." She didn't have to say what she meant. I
was always welcome to visit, but because I had the virus I wasn't
welcome to live there any more. It's not that she doesn't love
me, she just couldn't take it any more. Besides, if I went home,
I'd have to eat off of paper plates and drink out of styrofoam
cups like my brother did. And they would worry about the kids.
There are three little children. I understand. I know I can't
give my cousins the virus by eating or playing with them. But my
family doesn't trust what someone else says, not abo~it that word,
"AIDS".
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139
5
I couldn't go to my brother's funeral so I never got a
chance to tell him goodbye. I never shed a tear for him, but
sometimes when I'm by myself I cry because I don't want to be
treated like trash by my family. I don't want them to have to
stand ~twenty feetuway from me to talk to me.
I told the hospital social worker I couldn't go home. She
told me she would find me a place to go. On March the ninth, I
was taken to the Pickens Respite Care Center. It has six beds,
and it's the only place in Birmingham for homeless people with
HIV. You can only stay there until you get on your feet. Then
you have to get a job and find your own place to live. There is
no permanent housing that I know of in Alabama for people with
AIDS or HIV, except maybe the Salvation Army, were they turn
people out at six o'clock in the morning.
Tell me how I'm supposed to get a job when people find out I
have the virus. I applied for disability, but I don't know if it
will pay for an apartment I just want a place where I can stay
on my own without having to worry about what anybody else is
thinking. bne of my cousins pays for my medicine right now, and
if I had a place to live, my boyfriend would take care of me. I
don't know how I'm going to make it happen, but I have faith that
it will. And I'm hoping and praying that someone will make the
same thing happen for other homeless people with HIV.
PAGENO="0144"
140
National Coalition for The Homeless
Testimony of Virginia G. Shubert
before the
U.S. House of Representatives
Subcommittee on Housing and Community Development
of the
Committee on Banking, Finance and Urban Affairs
March 21, 1990
Good morning. My name is Virginia Shubert. I am the Director
of the AIDS Project of the National Coalition for the Homeless.
This morning you have heard eloquent testimony from homeless
men and women living with AIDS. Each story is unique, but their
voice is legion. In New York City alone there are some 8,000 to
10,000 homeless people living with AIDS. This number will soon
double and even triple as AIDS spreads among persons who are
already homeless and forces homelessness on those who are only
marginally housed. Yet the Case Management Unit of the Division
of AIDS Services of the City of New York, intended to provide
housing assistance and comprehensive social services for low income
people living with AIDS, is on the verge of collapse under the
burden of just over three thousand client cases. Crisis management
forces a presumption of ineligibility on desperately ill people.
Hospitals, in need of beds, discharge people into the streets or
refer them to clearly dangerous public shelters where they are
supposed to stay until they can no longer bathe or toilet
themselves, and people struggle for survival while the government
turns its head, hoping they will all just go away.
101 1~i~ 22nd SIftu Ne ~¼ `~)rIc NY 1001(1 * 212-46(1 8110 * Fa~ 212-~77-3034
1(21 (unnecticut .\~cnue. \Vushington. DC 20((0~ 202-265-23~1 Fa\ 202-265-261
PAGENO="0145"
141
A recent report suggests that 6.5% of homeless youth, ages 16
to 20, in New York City are HIV seropositiVe. The seropositivity
rate reaching 17% among youth who are 20 years old. Yet the City
offers no housing or support services for these young people.
Meanwhile, the only shelter in New York for homeless youth, a
private religious institution, prohibits the distribution of
condoms, knowing that a majority of homeless youth are forced at
some point to engage in sex for money, food, shelter, or drugs.
It is clear that our housing and social service system is
failing. Even more clear is our lack of political will to change
that situation.
"That's New York," you say. "Thank God we don't have those
problems." But if you say that you only lie to yourself. And for
the sake of that lie people will die. For AIDS and homelessness
are indeed pandemic co-factors.
The National Coalition for the Homeless recently completed a
study of homelessness and AIDS in 26 communities and rural areas.
I have provided a full copy of this report for your consideration,
but I would like to share some of its findings with you here: In
Richmond, Virginia, certainly not the AIDS epicenter, persons
tested for HIV have a seropositivity rate of 3%. At a clinic for
homeless people in Richmond the seropositivity rate among those
tested is 12%. Yet there are only three beds available in the
entire state for homeless people with AIDS.
In Delaware, some 30% of the 5,000 people known to be HIV
seropositive are in need of housing assistance. After a two-year
PAGENO="0146"
142
struggle against community opposition, one private organization
has created an 8-bed transitional group home, the only currently
planned housing for people with AIDS in that state. Chicago,
Illinois has no housing for homeless people with AIDS.~ Yet one
~thirdof the drug users who are HIV seropositive are also homeless.
One agency in that city~reports receiving 15 to 20 new referrals
every month to assist homeless people with AIDS.
In Los Angeles, people with AIDS discharged from hospitals to
shelters are warned not to reveal their medical condition because
only 5 out of 42 shelters in that city will accept someone who they
know to be HIv seropositive. L.A. has no supportive housing for
homeless people with AIDS. In Seattle, Washington, an estimated
5 to 15% of the homeless population is HIV seropositive.
The State of New Jersey has a homeless drug user population
second only to New York. The only supportive housing in the state
for homeless people with AIDS is a single nursing home. Three
months ago in Newark, New Jersey, a homeless man with AIDS was
found dead in a building foyer three blocks from the hospital from
which he had been discharged into the streets only two weeks
before. Newark officials have consistently opposed the development
of any supportive housing for people with AIDS in their city.
No one really knows the actual number of homeless people with
AIDS, though identified populations exist in each of the 26
communities and rural areas we surveyed. What we do know is that
the numbers will continue to grow as HIV infection spreads and
chronic illness depletes the ability of persons who are currently
PAGENO="0147"
143
housed to meet the rent. We also know that little if anything is
being done in most of these places to get these persons housed.
Why have AIDS and homelessness become such powerful co-
factors? The answer isn't too difficult. Ours is a society in
which neither housing or health care is considered a basic right,
where homelessness had become endemic long before AIDS came on the
scene. Consequently it's inevitable that the weak will lose in the
competition for scarce resources whether they are homeless people
in need of preventive health care or people with AIDS in need of
housing.
Despite our much touted AIDS education and prevention program,
we have done almost nothing to ensure that homeless persons can
avoid HIV transmission. Most homeless people, like most of us,
engage in sexual activity. But very few shelter or other homeless
providers have bothered to provide their clients with adequate
safer sex information. Even fewer have gone to the trouble to
provide the resources by which to practice safer sex. Given a
choice between buying condoms or food, which would you take?
Many homeless people are HIV drug users. Yet across the
country, drug treatment capacity falls woefully short of need and
demand. Efforts to prevent transmission among those who cannot or
will not obtain drug treatment have been equally inadequate.
For people living with chronic illness, including AIDS,
disability entitlements across the board are inadequate. For
example, the estimated monthly living expense for a single person
in Seattle, Washington is $1,500. Yet the SSI monthly payment is
4
PAGENO="0148"
144
only $400. In addition to this general problem, people living with
AIDS face special hurdles. For example, HUD, assuming that AIDS
is inevitably and quickly fatal, has made a policy decision that
people with AIDS are not "handicapped" under Section 202 of the
Federal Housing Act since their impairment is not "expected to be
of a long-continued and indefinite duration." Thus people with
AIDS are cut of f from even the meager existing housing funds for
people with disabilities, including, ironically, McKinney Act
funds, named to honor a man who died of AIDS.
The only federal funding stream available for the creation or
residential facilities for people with AIDS at this time is
Medicaid. In New York these funds are being used to develop HRF5
(Health Related Facilities) and SNFs (Skilled Nursing Facilities)
as part of the so-called "continuum of care." Let's be clear about
two points in this regard. First, so long as what is offered is
a place to die and no place to live, the "continuum of care" is
nothing more than propaganda. Second, while some people with AIDS
are in need of skilled nursing care, HRF's and SNF's are not an
alternative to adequate housing and never will be. They are
medical facilities, and, as such, they rarely respect the privacy
of the individual nor do they facilitate independence that people
with AIDS need in order to live their lives as whole people.
Beyond that, HRF's and SNF's are not the answer to the need
for appropriate housing because building and staffing requirements
make them too expensive to be a solution for more than a
comparatively small number of people. Due to their great expense
PAGENO="0149"
145
they are usually large, with beds for 200 to 250 people. Such large
warehousing facilities make personalized care and relief from day
to day stress all but impossible. Also, by their size alone they
invite NIMBY, the not_in_my-backyard syndrome.
Finally, these facilities are wrong because they are of no
future use. I, for one, believe the AIDS crisis will be brought
to an end. We must act in that belief. The housing needs of
people with AIDS must be met with affordable units that can become
a part of the permanent housing stock once this crisis has passed.
People with AIDS who are also drug users face even greater
barriers to housing. In every community surveyed, drug treatment
was virtually impossibly to obtain. In addition, recent Federal
legislation excludes drug users from participation in any federally
funded housing program. Even without this federal prohibition,
almost all housing programs for people with AIDS require that the
applicant be drug free as a condition for housing. For many people
who are chronically drug dependent this requirement is unrealistic
in any case. It is even more unrealistic when persons are
routinely denied access to drug dependency treatment. Clearly,
without drug treatment people cannot obtain housing, nor can they
obtain proper medical care or the other basic services they need
to survive.
The problems of homelessness and AIDS are not without
solutions. To begin, an across the board increase in funding for
people with disabilities is essential. Beyond that, we must
develop a federal funding stream that encourages immediate
6
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development of non-medical housing for people with AIDS.
The AIDS Housing Opportunities Act is one small step in the
right direction. But, I must emphasize it is only a ~g~jJ. step in
comparison to the desperate need. The entire sum allocated over
two years by this legislation would barely cover the existing
capital gg~ needs for supportive housing in New York city alone.
Further, this legislation does not guarantee that the money
allocated will create medically and psycho-socially appropriate
housing rather than inappropriate forms of institutional care.
State and local governments must also begin to strategically
target their resources. To be sure, areas hardest hit by the
epidemic are already overburdened and do not have the resources to
develop this housing on their own. But they can do much more than
they have so far. For example, New York City owns some 50,000
units of in rem housing stock. Some 3,800 of these units are ready
for immediate occupancy. But the city has targeted only 300 of
these units for people living with AIDS, despite the obvious
immediate need. We cannot excuse the failure of state and local
governments to assume their share of the burden. Rather, we must
compel every available resource until the needs of homeless people
with AIDS have been met.
Of course, we will not achieve any of these solutions unless
we force recognition of the need and generate the political will
to do something about it. So let me conclude by suggesting several
steps in that direction. First, we must educate ourselves. By
that I mean we must allow the people who are experiencing the pain
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to teach us. Homeless and near-homeless people living with AIDS
are the experts and must participate both in identifying the
problems and in creating the solutions. They cannot do this so
long as we insist on treating homeless people with AIDS as persons
only to be pitied or avoided, cared for or' scorned, rather than
affording them the dignity of their own voice and a forum from
which to speak out of their own knowledge and experience.
Second, we must recognize that housing and basic social
services are an intrinsic part of health maintenance. The AIDS
world is abuzz right now with talk of preventive use of AZT, DDI,
aerosolized pentamidine and the like. But all the wonder drugs
that NIAID and the FDA could possibly produce won't do a damn bit
of good so long as people are denied access to the shelter and
nutrition that they need to preserve their health. Health care is
a human right. So also is adequate housing.
8
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M~R 19 `90 10:31 CAThOLIC CHARITIES P.2/il
R~(ARKS TO TK8 U.S * ROUSE OF REPRESENTATIVES SUBCOMMITIEE ON
ROUSING AND COMMUNITY DEVELOPHENT
Patricia Sullivan, Director
Peter Claver Community
AIDS/ARC Services Division
Catholic Charities/San Francisco, California
March 21, 1990
Esteemed Members of Congress, Ladies and Gentlemen:
My name is Patricia Sullivan and I am the Director of Peter
Claver Community1 a 32-room residential facility in San
Francisco, California created for homeless persons with AIDS or
symptomatic HIV. This program is part of the AIDS/ARC Services
Division of Catholic Charities, San Francisco, and is sponsored
by Catholic Charities on behalf of the Roman Catholic Archdiocese
of San Francisco.
My background is in humanities and psychology. For the last four
years, specifically, I have worked with people living with
HIV/AIDS. Those I see grapple with diverse, stark issues1 AIDS,
mental health/neurological impairments, substance abuse problems
and hoznelessness.
The housing needs for persons with AIDS presents an incredible
challenge. They simultaneously require a continuum of care
determined by the progression of HIT and balanced by their
concomitant -level of required, desired or available care.
Moreover, housing -- like everything else associated with AIDS--
is enormously expensive. Congresswoman Nancy Pelosi indicated in
a November 1988 article for the periodical, American
Psychologist, that: "the total costs of treating AIDS patients in
1986 was approximately $1.1 billion. The projected cost of care
for AIDS patients in 1991 is estimated to be $8.5 billion."
These figures are staggering. And, they do not even include the
housing and related social service needs of those with AIDS or
symptomatic HIV illnesses. In the last decade, housing for the
homeless with HIV in San Francisco, has been provided through a
collaborative effort. This involved federal, state and local
government arid non-profit agencies such as Catholic Charities. It
was complimented by the impressive financial and volunteer
resources of private donorship: individuals, corporations and
foundations. These not only enhanced the quality of HIT-services
but, indeed, built an&_supporte&t.hgo~, as well. To date, they
reflect an approximate match of 50 cents on the dollar for each
one spent in public sector funds. It was partnership between
government and the private sector that brought us so very far.
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MP.R 19 `95 15:35 CATHOLIC CHARITIES P.3/il
2
Ironically, and to measurable degrees, this otherwise marvelous,
community response has worked to the disadvantage of people
living with HIV and those who have worked with them. It has
masked the enormity of the problem and the critical need for
federally-Supported housing and social services for the homeless
with HIV. The greater and more bitter irony lies in this: the
problem is not confined to San Francisco. As AIDS continues to
spread and persons with AIDS continue to live longer, cities
across the nation will be called upon to respond to overwhelming
needs for supportive and affordable housing demanded by the HIV
health crisis.
But, just who are the homeless with AIDS/Sly? When we speak of
homelessness or its pending threat for the Sly-diagnosed, we
speak not only of the "newly-made homeless" resulting from their
loss of economic stability and caused by their inability to work.
As is more often the case, we will encounter persons who are
already disenfranchised -- estranged or geographically distant
from their families or having families who are unable to provide
financial or emotional support. Some will also have histories of
substance abuse, pre-existing psychological disorders,
neuropsychiatric impairments and/or HIV-related dementia.
Exact statistics on the number and needs of the homeless with
AIDS/HIV are difficult to obtain. Much of what we know is
anecdotal. The consensus among government agencies and service
providers in san Francisco, however, is this:
In our relatively small city of 750,000 citizens, there
are between 400 and 600 homeless persons with AIDS/HIV
at any given time. There are a total of 147 beds for this
population. San Francisco, with its closely surveyed and
highly-esteemed national record of community response to
the epidemic, is unable to meet the needs of the homeless
with HIV at the present time.
Candidly, we now face our most serious period in the history of
the AIDS epidemic. Figures from the SFDPH "AIDS Inci4gnce &
Mortality by Month of~Diagnosis or Deeth~l98O-198~" report their
projections which will have us leap from over 7,800 S.F. AIDS
cases since 1981, to well over 17,000 cases in 1993. In other
words, 1 in 44 San Franciscans would be affected. Already, our
city is financially strained to the breaking point. We are
tackling complex social problems and costs related to
homelessness, AIDS, drug abuse, and the aftermath of the October,
1989 earthquake, which, I might add, damaged or destroyed 15,000
units of housing -- 250 of which were being primarily used by
homeless or low income individuals and families.
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~14R 19 `90 1033 C4THOLIC CH4RITIES P.4/li
3
With this in mind, I.. would like to describe the spectrum of
housing options and~: needs. For the sake of clarity, I will
discuss the various- housing .categories as follows:
-- Transitional/emerçency - housing;
-- Scattered site housing without 24-hour support;
-- Long-term residential programs with 24 hour on-site
social services;
-- SRO's (single room occupancy) with services
provided by an outside agency;
-- Family housing;
-- Subacute housing for persons with moderate
dementia;
-- Medical/psychiatric locked facilities for persons
with severe dementia;
-- Skilled nursing facilities;
-- Hospices.
Though the mental health, psychosocial and medical client needs
may overlap in the different categories, I will discuss them
individually in order to underscore the multiplicity and
magnitude of concerns.
I. TRANSITIONAL/EMERGENCY HOUSING
At some point, roughly half of those persons with AIDS or
symptomatic HIV, no longer able to work, must live on a fixed
income of less than $700 per month. The result is either that
the individual becomes homeless or is at imminent risk of
hecoTniflg so. Shelters are a poor solution to housing persons
with compromised immune systems whose medical condition can
fluctuate daily. Since waiting lists for existing residential
programs are long, emergency housing pràvides a much needed
service by keeping persons with AIDS or symptomatic HIV off the
streets and in a safe environment.
But unfortunately, given the lack of emergency housing, few of
the total in need are able to be accommodated. I have worked
with many clients who have spent nights sleeping in abandoned
cars, under freeway underpasses, in alleys or fields, and on-and-
off in rodent-infested SRO's. For women, the added risk of being
beaten and/or raped is commonplace.
The AIDS/ARC Division of Catholic Charities and the San Francisco
AIDS Foundation have both implemented emergency housing programs.
These provide housing vouchers for stays of up to two weeks at
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4
approved SRO's or for use within a system of designated
apartments/ flats for 3-6 months. Since no more than 20 can be
housed in emergency flats, the vast majority exhaust their two
week allotment of vouchers and end up caught within the cycle of
homelessness.
Patterns of chronic substance abuse and/or dementia can only
compound the problem for them.
II. SCATTERED SITE BOUSING (without 24-hour support)
With the help of rent subsidies, persons who can manage
independently can be accommodated in a small group home setting
or remain in their apartments. Ideally, there should be no
significant medical or psychiatric needs. Visiting nurses, social
workers and other health care/mental health providers, in this
instance, would be available as needed on a consortium basis.
Outstanding barriers to the integrated delivery of consortia
services do exist, however. The lack of adequate funds to
establish a single, coordinating entity to plan, develop, and
implement a comprehensive system is one factor. Another is that
funding for staff arid operations has not been available;
consortium partners have usually found that their contribution
cannot meet the complete need. A third barrier is that certain
hard-to-reach clients, cut of f from sources of help, have unique
requirements that cannot be adequately or efficiently addressed
by a single consortium.
A scenario close to reality follows this pattern: At first, the
individual is able to function independently. When his/her health
declines, resources for discharge to subacute level housing are
unavailable. Health care providers are forced to respond to
skilled nursing needs they are not equipped to handle. What
resources g~ be tapped to provide medical/attendant care are
usually overworked and overburdened already. The result is
continually cleaning up after someone who is incontinent but does
not require acute care. As such, a hospital will not admit this
person. Throughout this scenario, there is the absence of
effective and comprehensive case management for health and social
services.
III. LONG-TERM RESIDENTIAL PROGRAMS (with 24-hour, on-site,
support services)
AS the director of Peter Claver Community I would like to share
with you a few examples of the numerous problems and frustrations
that I have encountered over the past three years. We house 32
homeless men and women with AIDS or ARC -- 98% of whom
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5
have histories of substance abuse, pre'~existing psychological
disorders, neurapsychiatric impairments and/or mild-moderate
dementia. Our client population is diverse: 10% are women; 22%
are Latirio; 13% are African American.
some have histories of I.V. amphetamine use. Some are
alcoholics. Others are former heroin addicts who are now on
methadone. Some have abused prescription medications such as
Valium or Xanax.
Others have been cocaine/crack users. Almost ~fl have come from
families in which there was substance abuse, physical abuse or
sexual abuse -- sometimes all three. An AIDS or ARC diagnosis is
just one more blow; striking a life that has been chronically
chaotic or unstable.
Our goal is to provide a stable, mutually supportive and
structured living environment to people who would otherwise be on
the streets. A history of "marginal" lifestyles, often makes our
residents ineligible for other existing housing programs. But
they are no different than you or I might be when and if we
grapple with issues of sobriety . . . quality of life.., death and
dying ... what meaning life holds for us.
Services that we provide in addition to safe, affordable housing
include: 1) on-site casemanagement; 2) client advocacy; 3)
counseling; 4) psychosocial assessment; 5) psychiatric
consultation and assessment; 6) coordination of substance abuse
treatment; 7) adult day care and 8) emotional support volunteers.
Money management is mandatory. Under the NcKinney Homeless Act,
we received Section 8 certification, so residents pay one-third
of their disability entitlement. This means that Catholic
Charities receives the client's disability benefits and one'-third
is automatically deducted to cover the housing costs. The balance
is given to the client. in-home -support services and attendant
care are coordinated with home health care agencies. Weekly on-
site NA and AA meetings also take place. Meals are furnished by
Project Open Hand but many residents can and do prepare meals for
themselves and their friends or co-residents.
Though designed as an independent living program, we make every
attempt to enable a resident to remain at Peter Clever throughout
the various progressions of HIV -- providing this is in the best
medical or psychiatric interests and the resident adheres to the
program policies.
Care management needs are consistently unpredictable: on a given
day we might respond to the grief of a woman who has just
relinquished parental rights, legaLly-placing her five year old
daughter with an adoptive family .... Confront a host of
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MAR 19 `90 10:34 CATHOLIC CHARITIES P.7/li
6
disruptive and potentially violent behaviors associated with
substance abuse ... Attempt to orient a client with significant
HIV vision loss to his/her surroundings ... Or try to cope with
the dementia which leaves the client increasingly confused and
forgetful.
In terms of case management and housinV needs, dementia is of the
utmost concern. The University of California AIDS Health Project
and the NeuropsychOlOgy Service of San Francisco General
Hospital, with the S.P.Dept. of Public Health recently conducted
a survey on the topic of dementia. The results indicated that of
318 persons assessed, 49 percent had at least a moderate degree
of cognitive impairment. One-third were described as having
residential placement problems. Characteristically, management
problems would include wandering behavior, home safety problems
(e.g. accidental causation of fire), memory loss or confusion and
inability to take medications without monitoring. For persons
with severe dementia, which poses an even higher degree of
management problems, this can mean all of the above, plus chronic
incontinence and complete loss of short term memory.
At Peter Claver Community one-third of our funding is to provide
services to 6~0 persons with mild to moderate dementia or with
neuropsychiatric impairments, effectively rendering them
ineligible for most housing. One aspect of our services is an
adult day care and recreation program including art therapy,
creative writing, organized outings including entertainment or
cultural events and a therapeutic swim program. The intent is to
engage in activities while avoiding strenuous demands because
overstimulation for persons with mild to moderate dementia can
result in extreme confusion.
Though our intake policy for those with dementia clearly states
"mild to moderate," the lack of other supportive housing for
persons with "moderate to severe" dementia means that as our
residents' dementia progresses, we are put in the position of
dealing with residents who require extraordinary amounts of care.
This creates a great strain on the staff.
For example, a resident entering the program with moderate
dementia progressed to severe dementia. ~e was ambulatory (no
skilled nursing needs), incontinent and unable to take his
medications independently. He was a fire hazard because be would
forget he was smoking a cigarette. He was never at the residence
for his attendant's or nuraC's attempted visits. But, meantime,
he had enrolled at the local city college for courses in
Calculus, Mandarin Chinese, Physics and Chemistry. Clearly, he
posed management problems beyond what we could handle.
Since he was not in need of acute care, the hospital would not
admit him. We had no choice but to have him involuntarily
PAGENO="0158"
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M~iR iS `95 iS;95 C~ir~LIL CH~R11IES
7
hospitalized at the Psychiatric Emergency Services of a local
hospital. He was released from there to an SRO.
Five months later he showed up on the doorstep of Peter Claver
Community, believing that he still resided there. I called
around and discovered that he had been in a skilled nursing
section of a hospital but since he had left the hospital "against
medical advice" they refused to readinit ~him. With no suitable
housing, lie ended up back at the SRO.
This is not an isolated case. Persons with severe dementia,
desperately in need of supervised housing, are left to fend for
themselves in SPO's or end up in the locked psychiatric units of
hospitals.
IV. SRO's (with services provided by outside agencies)
Some do not wish to enter housing programs and choose to remain
in SRQ's. This could be the result of chronic substance abuse or
simply a scarcity of housing options. For them, it is vitally
important to have consistent adjunct services such as public
health nurses, mental health outreach workers and social workers
in order to monitor medical and psychiatric needs. Despite
efforts, many of these individuals "slip through the cracks."
This, simply, can be
caused by someone not having a phone, thus unable to connect with
health care providers in a timely and consistent fashion. For
such clients, "follow-through" with appointments is already
problematic. An unstable living situation -- in and out of
SRO's -- only serves to exacerbate this.
V. F~HILY HOUSING
Relatively few housing programs supply housing for families
affected by HIV. Their demographic incidence of total AIDS cases
varies from region to region. In some regions, it is quite high.
And, we know that minority populations are, without question,
disproportionately affected. With one or both parents sick, it
is impossible to stabilize a family without health and social
support services.
Commonly, a family is comprised of a single mother with children.
She may attempt to keep the family intact by living in a studio
apartment in a run-down part of town. She tries to attend to the
demands of her children and her own medical needs while her
health declines. Imagine having to get out of bed and go to the
hospital clinic on a day when you feel so fatigued that you can
barely move. Still, you must take your children with you while
you wait for hours for your appointment.
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MAR 19 `9010:36 CATHOLIC CHARITIES P.9/li
8
Through all this, you are worrying, " Who will take care of the
children if I get hospitalized?"
At Catholic Charities, we have a house for AIDS-affGcted
families1 with an emphasis on single mothers with children. The
residence, Pita da Cascia House, currently shelters three
families. One family is a woman with AIDS, her husband with ARC,
and their two daughters ages 8 and 12. The second family is a
woman who is seropositive, her husband who is antibody negative,
their 2 year-old son who is seropositive and their two month old
daughter who is also seropositive.
We are also providing temporary housing for the next six months
to a Russian mother and her five year-old son, who contracted the
AIDS virus through a transfusion. The child was born without a
lower intestinal tract and is here in the United States for a
series of operations to help correct this condition. Four
families are on our waiting list at Rita da Cascia. All are
single mothers with one to two children.
In addition, we provide case management, rent subsidies,
socialization opportunities and emotional support for a woman
with AIDS and her four children, ages six to seventeen years. By
helping them with their rent, we are able to keep them in their
own home. Through an arrangement with a local hospital, we are
able to provide them with health and mental health services.
Special needs that have poignantly surfaced in working with
families include childcare when a parent is ill or hospitalized,
issues around death/dying and loss when a child is watching
his/her parent's health decline and placement of the children
into foster homes or adoptive families once the parent has died.
VI. SUBACUTE HOUSING FOR PERSONS WITH MODERATE DEMENTIA
As I mentioned in my discussion of Peter Claver Community,
housing for persons with moderate dementia is critically needed.
The San Francisco Department of Public Health's AIDS Office has
recently proposed a 24-Hour residence for persons with moderate
dementia. The facility would house up to 15 adults. It would
furnish round-the-clock attendant care with an on-site social
worker, psychiatric technician and a part-time day care
coordinator. In addition, a nurse consultant would be available
to coordinate the monitoring of medications and to evaluate
medical status. A cook would prepare the meals as persons with
dementia can forget to eat -- even when meals ar. delivered to
their homes.
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156
9
VII. t2EDICBS.~/PSYCHThTRIC LOCKED FACILITIES FOR PERSONS tf~~H
SEVERE DELfEBTIA
This type of housing does not formally exist but, ideally, it
would provide locked, supervised care for persons with severe
dementia. As I mentioned before, this would be for those with
virtually no short-term memory ability and significant cognitive
deficits. Behavior can become regressive or uninhibited with a
complete loss of intellectual abilities. To illustrate, I will
relate to you an example:
An actual patient with severe dementia was being "warehoused" on
the general psychiatric unit of a local hospital. There was
simply no other appropriate facility available for him. He
wandered the ward screaming out the words of any signs posted
there. He, as a typical example of persons with severe dementia,
was completely disoriented; unable to recall such things as his
date of birth, social security number, what year it was or who
was the current president. Despite this, the patient did not
always have skilled nursing needs.
VIII. SKILLED NURSING FACILITIES
When one is no longer able to function independently because of
dmclining health, skilled nursing is often needed. This level of
care provides 24-hour medical supervision for possibly non-
ambulatory persons, some with acute diarrhea, and/or dehydration.
They are unable to care for themselves even with attendant care
in an unsupervised setting. Clients who rehabilitate are
discharged once they are able to return to independent living.
IX. HOSPICE
Hospice provides 24-hour medical supervision in cases of persons
with a 6-months or less life-expectancy. It is assumed that
hospice patients are not expected to regain the capacity to
function independently and will require substantial monitoring.
SUENARY
This overview of the various and diverse housing options and
needs for persons with AIDS or symptomatic HIV omits areas which
deserve special mention. I refer to programs specifically
designed for children and for adolescents with AIDS. Though the
usual means of transmission for children may be perinatal,
adolescents with AIDS are usually homeless youth who engage in
many high risk behaviors, including I.V. drug use and
prostitution.
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157
F. 112 IT
10
A con~piCU0US1Y problematic issue Ic the accessibility and
availability of drug/alcohol treatment for persons with AIDS.
Although some treatment facilities reserve a designated number of
beds for the HIV-infected, the number is too few to adequately
serve those desiring treatment. Waiting lists of six-months are
barriers for those who resolve to enter treatment. The chronic
pattern of substance abuse continues, thus only furthering the
person's medical and psychiatric problems.
A recent, exhaustive survey on supportive housing for persons
with AIDS by the Now York AIDS Consortium indicated that, out of
29 cities in the United States with supportive housing available,
there was a total of 543 beds available. (This did not include
skilled nursing,hospice beds). At the end of February, l990~
more than 47,000 persons were living with AIDS in the United
States. If even ten percent of this population are or become
homeless, and if we allow for the fact that many others with
symptomatic HIV will become homeless as well, we can expect not
hundreds but thousands of persons with HIV illnesses to be
homeless throughout the nation. They will present a particular
crisis for those cities, like San Francisco, which are the most
heavily impacted by this epidemic.
I cannot emphasize too strongly the critical need for increased,
affordable housing for those with AIDS/HIV who are homeless,
perhaps with other health and behavioral issues. In the past,
this issue has been dealt with mostly by community based
organizations, private funders, city or state government. 8ut
these resources are nearing exhaustion. In my view, the federal
government must become a full partner in the response which can
and must be made on behalf of those with AIDS/HIV.
27-986 0 - 90 - 6
PAGENO="0162"
TESTIMONY OF THE WHITMAN-WALKER CLINIC, INC.
U.S. HOUSE OF REPRESENTATIVES
SUBCOMMITTEE ON HOUSING AND COMMUNITY DEVELOPMENT
OF THE
COMMITTEE ON BANKING, FINANCE AND URBAN AFFAIRS
Honorable Henry B. Gonzalez
Chairman
March 21, 1990
158
WHITMAN.
WALKER
CLINIC INC.
1457 S STREET NW
WASHINGTON DC
20009
202/797-3500
FAX: 202/797-3504
NOVAAP~~OJECT
3426 WASHINGTON BLVD
SUITE 102
ARLINGTON, VA
22201
703/358-9550
FAX: 703/358-9557
Jim Graham
Administrator
Whitman-Walker Clinic, Inc.
PAGENO="0163"
159
Thank-you Chairman Gonzalez and Committee Members. I am Jim
Graham, Administrator of the Whitman-Walker Clinic, the primary
provider of community-based AIDS services in the Washington
metropolitan area.
Today's testimony marks, almost to the day, the fifth anniversary
of Whitman-Walker Clinic's housing program for people with AIDS.
It was in late March of 1985 that people with AIDS moved into our
first group home.
It seems odd that we have been around long enough to mark such
significant milestones. In the early days of the epidemic, we
half-expected that this would all be over in a few years. In
those very early days, we could only respond to the most pressing
needs.
But the steady and urgent demand for our services has been very
long term. The five-year history of our housing services is one
of which we are very proud. It is a remarkable story. Yet, it
is not the story of a grand vision, big budgets, or larger-than-
life heroes. It's really the story of a community responding in
crisis, at first with little help from the outside. It is the
story of caring men and women committed to insuring that people
with AIDS have the opportunity to live with dignity. Most.
importantly, it is the story of many small victories by people
living with AIDS.
This history is shared with the other organizations represented
here today, as well as countless others across the country.
community-based service organizations remain at the heart of
providing housing and other support services to people with AIDS.
It is a tradition of which we are proud to be a part.
From that first house, opened in early 1985, Whitman-Walker
Clinic's Robert N. Schwartz, M.D., Housing Services, named for
one of our earliest volunteers, has grown to eight residences
with the capacity to house 40 residents at any given time.
Within that system we currently operate six group homes and a
six-unit apartment building for individuals capable of
independent living, in addition to a short-term, interim care
facility.
Some recent reports in the media have indicated that the AIDS
epidemic is subsiding, especially in the gay male population.
And while well documented studies evidencing just the opposite
have also been published, our fear is that the public and, in
fact, our elected officials will begin to believe that there is
no longer a need for large efforts to battle AIDS. In fact there
has never been a greater need for services. Our figures show no
decline in need. The populations increasingly affected by HIV
PAGENO="0164"
160
2
have few if any financial resources. And, as people with AIDS
live longer, their need for services multiplies.
From our experiences the need for housing facilities is greater
today than it has ever been. Of the over seven hundred people
with AIDS managed in our social work department last year, fully
half had monthly incomes of $500 or less per month at the time of
their intake. Often, their economic situation deteriorates over
the course of their illness. Many of the individuals who turn to
our housing program have no other alternative. In some cases
these people have been deserted by families and lovers or they
have virtually no income. These are not individuals whose
housing problems can be solved with rent assistance programs.
For our residents, these hoses provide a great sense of security.
When they move in, they are guaranteed a hose for life. These
residences relieve a great burden for individuals often
struggling for financial survival. And with that need addressed
they are able to focus their energy on physical survival.
The opening of our community residence facility last January
marked a very significant local step in meeting the changing
needs of people with AIDS. With the capacity of seven residents,
this D.C.-licensed facility provides short-term, interim care for
individuals who do not require hospitalization, but are not well
enough for independent living.
Unlike a nursing home or hospice, this residence was conceived as
a middle point. Too often we found that people with AIDS were
released from the hospital too early. They went home unable to
take adequate care of themselves and they were soon back in the
hospital. In other cases people with AIDS stayed in the hospital
far too long because there was no where for them to go except a
homeless shelter. With this new facility, people with AIDS have
a place to come and regain their strength with the hope of
returning to an independent living situation.
This home partially filled a significant gap in health care in
the District of Columbia. As AIDS becomes a long-term,
manageable illness, people with AIDS tend to have a series of ups
and downs over the course of several years. This residence helps
them survive those low points.
One of the most noteworthy aspects of this project is the
significant cost savings to the residents and, in fact, to the
whole community. The average cost per person per day in this
facility is $60. That compares to what can be over $1,000 per
day in the hospital or more intensive nursing facilities. Of
course more important than the cost savings are the improvements
in quality of life. Rather than lying in hospitals or being at
hose alone, individuals have the opportunity to recover in a home
with specially prepared meals and around-the-clock care.
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3
And our next residence, scheduled to open in June, marks another
exciting step forward. This new facility will be operated as a
home specifically for mothers with HIV/AIDS and their children.
This facility is funded under a contract from the District of
Columbia. We have already identified eight families who are
eligible for this new facility.
There are a variety of complex issues surrounding these families
and this home will address the growing needs of entire families
living with HIV. Some of the children will be HIV positive,
others will not. Regardless of their HIV status, these children
will need a great deal of support to cope with the problems and
emotions around their mothers' HIV status. In addition to
housing, these mothers and their children will be provided with
an extensive support network to help them build independent
lives. They will have live-in staff support, a network of
volunteer buddies and child-care assistants, support groups, and,
if necessary, a sponsor to help them cope with substance abuse
issues.
Over the past five years we have made real progress. We have
provided homes to over 180 people with AIDS, 52 in the last year
alone. We have pioneered a strong partnership with our local
government and responded to the expanding needs of people with
AIDS and the changing demographics of the epidemic.
But for as much as we, as one community-based organization, have
accomplished, massive gaps remains.
The most vital housing assistance program in the District of
Columbia, the Tenant Assistance Program, or TAP, collapsed in
late 1988. That program provided significant rent subsidies to
low-income individuals and many people with AIDS qualified. The
D.C. government is no longer issuing new residency certificates,
cutting off one of the most viable options to people with AIDS
for maintaining independent lives in their own homes. From our
experience we know that rent subsidies are the best means of
housing assistance when that is a practical alternative. The loss
of this government-sponsored program in the District of Columbia
has been devastating.
An indicator of the growing need for housing assistance is the
amount of rent assistance that Whitman-Walker Clinic provided in
fiscal year 1989 through our AIDS Foundation. During that 12-
month period, Whitman-Walker Clinic provided over $57,000 in rent
assistance to 133 individuals. That was over 50% of all direct
financial assistance provided to people with AIDS through our
AIDS Foundation.
One of the greatest problems affecting our organization is
finding a solution to the housing needs of individuals with
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4
active substance abuse problems. Individuals with abuse problems
are ineligible for our housing program because they are
disruptive in a group home setting. Yet, 15% of all of our
current social work intakes admit to active abuse of illegal
drugs. Of all individuals currently in our social work case
management system, we loosely estimate that 50% have active
alcohol or substance abuse problems. Problems that HIV infection
greatly magnify. Individuals with active substance abuse
problems, and those previously in recovery, often turn to alcohol
and drugs when given an AIDS diagnosis. Yet, that abusive
behavior makes it infinitely more difficult to fight the virus.
And more difficult for service providers to deliver support
services.
The solutions to housing these individuals are complex. We have
identified a two-tiered solution that includes halfway and
quarterway houses specifically for people with HIV and AIDS.
The halfway houses would provide homes for individuals in
recovery programs and the guarterway houses for active abusers
trying to get motivated for recovery. While these homes do exist
in the community at-large, they are crowded and most are
unequipped and unwilling to deal with individuals with HIV
infection.
The needs for these types of facilities are quite clear. Most
existing housing programs for people with AIDS exclude active
abusers and immediately remove those who evidence signs of abuse.
Unlike our current group homes, these halfway houses need live-in
staff who can provide supervision and strengthen support
networks. These houses must be able to respond to individuals
who do relapse. If these individuals are ever to recover, they
cannot be denied services when they falter. But in the existing
limited framework of services, there is no where to provide these
services.
We will soon be facing many of these issues in our house for
women and their children. Some of the women already on the
waiting list are in recovery and we have a number of issues to
solve before we can open this house. We must have immediate
access to treatment programs for women who relapse and we must
have foster care options in place in case a mother does relapse.
Removing families from the residence is not an option. Our
commitment in this residence, and in other residences with
similar at-risk populations, must be to provide residents with
the extensive support services to help them cope with their
addictions, their HIV infection, and their financial crises.
Because of the very real needs we see everyday in trying to
respond to the housing needs of people with HIV and AIDS, we
wholeheartedly support the AIDS Housing Opportunities Act. This
act recognizes the importance of providing rent and utilities
assistance. As we have found over and over again, it proves most
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5
cost efficient and helps maintain quality of life to keep
individuals in their own hones for as long as possible. The
bill also wisely provides money to states and localities to fund
- permanent new residences through~ non-profits. Throughout this
epidemic, community-based organizations have proven their ability
-to provide compassionate and empowering services at very
-~reasonable costs.- The public-private partnership is a viable
option and it is~good to see that recognized in this legislation.
Surviving AIDS is difficult, but trying to do so without life's
basic necessities is virtually impossible. People with AIDS
desperately need access to better health care. But that health
care will -do- then little good without a home. By providing
residence5~ for ~people with AIDS, you are giving them one of the
most basic tools in the fight for their life.
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165
Thank you Mr. Chairman and members of the Housing Subcommittee of
the House Banking Committee, for the opportunity to speak to you
today. My name is Barry Bianchi. I am the President of the
Board of Directors of the Northwest AIDS Foundation in Seattle,
Washington. I'm here to offer testimony in favor of HR 3423, the
comprehensive AIDS housing bill sponsored by Representative
McDermott, Representative Pelosi and Representative Schumer. I
am extremely pleased to have this opportunity to address an issue
of such critical importance to people with HIV/AIDS. I offer my
thanks to Representative McDermott for his work on this creative
and foresighted piece of legislation. People with AIDS have many
critical needs, but surely none is more central than the need for
a safe, secure home.
There are two points that I would like to make in my testimony
today. The first is to present to you Seattle-King County's
experience with a comprehensive housing program. Secondly, I
would like to address the concepts and principles behindHR 3423,
and speak to specific elements within each of the proposals.
The organization which I represent, The Northwest AIDS
Foundation, was founded in 1983 by a group of doctors and leaders
in the gay community, to provide education, money and services to
people living with AIDS and those at increased risk of HIV
infection. The Foundation is now one of the leading AIDS
organizations in the nation and has broadened its Board, staff
and volunteers to include people from all communities impacted by
the AIDS epidemic.
The Foundation has 35 employees, 600 volunteers, a two and one
half million dollar annual budget and widespread acceptance as
the leading AIDS agency in Washington state among volunteer
organizations, government agencies, social and health care
providers and others involved in the support of people with AIDS.
The Foundation is a nationally recognized model for AIDS
education, advocacy, case management, housing, fundraising and
service agency coordination. Revenue is derived from government
grants (approximately 51%) and individual, foundation and
corporate donations (approximately 49%).
Seattle is referred to as a second-wave city, meaning that the
curve of the epidemic is three to five years behind those cities
where the epidemic began in this country, like San Francisco and
New York. As of January 31, 1990, 1636 cases of AIDS have been
diagnosed in Washington. While 30 of the 39 counties in
Washington have recorded cases of AIDS, 76%, or 1198 have
occurred in Seattle-King County.
One of the advantages Seattle has had over New York, New Jersey
and San Francisco, is that we have been able to learn from the
first wave cities, and to have been provided with a window of
planning opportunity.
The Northwest AIDS Foundation became involved in housing in 1985,
when then Seattle Mayor Charles Royer convened a task force to
identify the housing needs of people with AIDS. The task force
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166
included representatives from city arid county government and
local non-profit community organizations. They concluded that an
integrated approach was needed, which combined housing with
health care and social services. This early work became the
framework for Seattle's long-range plan for responding to the
housing needs for persons with AIDS and HIV disease.
Some key concepts guided the development of Seattle-King County's
continuum of care services and our response to housing needs:
First, Lead agencies were designated; one public (the Seattle-
King County Department of Public Health) and one private (the
Northwest AIDS Foundation), to coordinate the development and
implementation of community- and home-based AIDS services. The
use of lead agencies facilitates program planning and
implementation, enables the selection of the most appropriate
providers to offer services, assures that appropriate standards
of care are in place, facilitates coordination and provides a
mechanism to capture data needed for further program planning and
evaluation.
Second, case management services are available to every AIDS
patient. Case managers serve as a resource to each client, to
coordinate care and services and put them in contact with the
help that they need. Case managers are the backbone of the
Seattle-King County care system for persons with AIDS and the
glue that ties together all the elements of our larger continuum
of care.
The third central concept was the development and promotion of
diversity of options for persons with AIDS in the types of care
available. This concept is exemplified in our approach to
housing and residential long-term care. We recognize that
persons with AIDS are as diverse as any cross section of society
with respect to where they choose to obtain care and the living
arrangements they prefer.
The fourth key concept was to foster and support the strong
volunteer system which had been so important in providing
services. Volunteers in Seattle provide home services,
transportation, massage, shopping, chores, and emotional support.
This is a network that is available to people with AIDS and
people in our housing programs. This critical component of the
Seattle-King County plan not only saves money but enhances the
quality of life for many persons with AIDS and for the volunteers
themselves.
The Seattle-King County AIDS housing program is similarly based
on a primary goal and four guiding principles. The goal is to
provide housing services for persons in need, at various stages
of HIV disease ranging from independent living to 24-hour nursing
care. Principles that support that goal are: to assist persons
with AIDS in retaining their own personal living situation for as
long as possible; to make alternative living situations available
that are appropriate to clients' needs and desires; to support
clients in the least restrictive setting for the maximum duration
possible; and finally, that housing will be centrally monitored
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and coordinated. The continuum of housing options today consists
of a rental subsidy program, emergency housing, independent
housing, private homes and apartments, adult family homes, long-
term care facilities, and hospice services.
The Seattle model of housing service is unique in that it is not
only cost-effective but it is humane. We have been fortunate to
have been able to pursue a public health policy which not only
looks at the cost, but also addresses the best interest of the
client.
Three examples illustrate the range of the full spectrum of
housing options. Others are included in the housing report,
which is attached. In March of 1988, the Northwest AIDS
Foundation was approached by a private individual who had
recently lost a friend to AIDS. Seeking both to care for other
persons with AIDS, and to make a memorial to her friend, this
individual offered her house as a group home for persons with
AIDS. Simultaneously, MAPS, the Multifaith AIDS Project, was
forming. Since one of their goals was to provide housing for
people with AIDS, the Foundation guided the transition to where
MAPS assumed sponsorship and management of the home. Clients now
pay $125 per month, compared to an estimated $800.00 per day for
in-patient hospital care. This facility remains at capacity,
with a waiting list.
In 1988-89, a community planning group coordinated by the
Seattle-King County Department of Public Health met to develop
recommendations for the residential 24-hour care needs of persons
with AIDS. The primary need identified was for a 35-bed long--
term care facility. The planning group evolved into AIDS Housing
of Washington. By the end of 1989, this non-profit agency had
raised a total of four and one half million dollars, out of six
million needed, for the design and construction of a 24-hour care
residence for persons with AIDS.
We believe this facility will be the first of its kind in the
nation. It will have 35 beds for people living with AIDS who
need 24-hour care and cannot be appropriately cared for in their
homes, but who do not require in-patient hospital care. The
estimated daily cost of care will be $200. In addition, the
facility will house an adult daycare facility, providing a
supervised environment, activities, and meals for persons with
AIDS who live at home and need supervision, but whose primary
caregiver works or is otherwise not available during the day.
The Northwest AIDS Foundation also recently received $25,000 from
the SAFECO Insurance Company to provide subsidized housing for
People with AIDS. This will provide housing support for 75
people with AIDS who otherwise would not be able to stay in their
homes. In a pilot evaluation project included in this grant, the
Foundation will interview and track these clients to determine
whether this is the most cost-effective form of intervention, or
whether placement in other permanent facilities is ultimately
better for the client.
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These three examples illustrate the private/public/non-profit
relationships enjoyed by the housing program in Seattle.
The spectrum of facilities in Seattle is impressive: a well
coordinated program involving cooperative relationships with 15
different organizations: churches, public, non-profit, and
private, individuals and corporations. However, Seattle's
program is on the cusp. Unless something changes, we soon will
only be able to help a fraction of those in meed. Let me explain
why we need the partnership with the federal government which
this legislation proposes. During 1989 the Foundation was asked
for housing assistance by 50% of the 540 people with AIDS and
Class IV infection in King County. We were able to satisfy 85%
of these requests. Most housing remains at capacity and waiting
lists are growing longer. We have done well in providing service
to our constituency but we have many grave concerns about the
future. The first is, as mentioned, the sheer impact of the
qxpj~ of the epidemic, and the realization that 1993 projections
indicate there will be at least 2,552 persons living with AIDS in
King County. By 1995, the numbers are expected to top 4,000. If
only current resources are available, in 1995, less than one
quarter of those in need of housing will be served. Just in
terms of raw numbers, Seattle's housing system for people with
AIDS must grow by a factor of 500% in order to be able to
continue our current level of service. Without an infusion of
support to the housing program, more and more people with AIDS in
Seattle will be faced with the choice of expensive hospital beds
or homelessness. Our second concern comes from the change in the
nature of the epidemic in Seattle.
To date, nearly 90% of\our cases have occurred in homosexual and
bisexual men and much like the demographics of San Francisco,
homosexual and bisexual men will continue to account for the
majority of our cases. However, substantial shifts in the
epidemic have already begun to occur. We have already begun to
see it. There are no housing options at all for some segments of
the population: the dually diagnosed, for example. People with
AIDS and mental health problems and/or AIDS and chemical
dependency and/or AIDS and dementia cannot live independently.
The required supervision is not available in any of the
Foundation's current housing options. Already, we have a gap in
housing facilities for IV drug users who are actively using
drugs. This is a significant unmet need which will grow. It is
estimated that 7-8% of the 12,000 IV drug users in King County
are seropositive. Potentially 850-960 persons could need this
kind of housing.
No emergency housing options exist for situations where a woman
and child both need housing and supportive care. All these gaps
will be exacerbated as the face of the epidemic changes in
Seattle. The housing advocates and case managers, the front
lines in the battle against AIDS, are already facing these
situations daily.
Finally, the housing program in Seattle has depended in large
part upon demonstration funding to fulfill its joint mission of
housing development and housing advocacy. Both Human Resources
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and Services Administration funding and Robert Wood Johnson
funding will expire in 1992. These two sources represent 21% of
our total budget and pay part of the salaries of the Housing
Coordinator and Housing Advocate. We have demonstrated the cost-
effectiveness of a housing coordinator to do the critical
development work which draws in new resources through grants and
cooperative agreements with other organizations. Just during the
1988 calendar year, the housing coordinator successfully
negotiated 2 new facilities for people with AIDS. A large part
of our success has been the ability to assess and place clients
quickly. Our transitional housing program in 1989 maintained a
91% occupancy rate in the 9 units. With an average stay per
client of only 65 days, it is critical to have the housing
advocates to accomplish a fast transition. It maximizes our
service and maintains the cost-effectiveness of the program.
The Northwest AIDS Foundation supports Congressman McDermott's
legislation for several reasons.
In Seattle, people with AIDS have proven to have urgent and
unique housing needs. When a person with AIDS comes to us for
help, his financial resources are depleted due to the loss of his
job, he has often just been discharged from the hospital from an
acute and chronic illness. He can no longer afford his current
rent, and he is seeking some sort of emotional support in facing
his own death. He is acutely aware that less than a year from
now,.he may need help to get out of bed, maybe even help to feed
himself. He is unaware of what housing is available, let alone
how to access such a system, and he is painfully aware that there
is no advocate for him, since most, if not all of his support
structure has abandoned him when he was diagnosed with AIDS.
Some of our clients have been living on the street where they are
susceptible to every disease; some families are moving from
shelter to shelter because their name hasn't reached the top of
the waiting list or they do not have appropriate rental histories
and these shelters do not provide care for the ill; and some
clients, because of their history of drug and alcohol abuse are
not tolerated by any housing provider and cannot get into
immediate treatment.
The housing challenge is obvious! The only successful housing
program for persons with AIDS is the program which provides
counselling and referral, maintains a plurality of housing
options and is cost-effective. As Congressman McDermott points
out, and as the Northwest AIDS Foundation has discovered,
placement of any person with AIDS into any form of housing will
require supportive services if it is to be effective, Placement
of chronically ill people must be swift, and expedited by those
who know the system; and it must be monitored as the needs of
the client change.
In Seattle, although we can place a single client in federally
subsidized housing through the Seattle Housing Authority, when
that client is severely ill, he is placed in a hospital and on a
waiting list to receive 24-hour care in a local adult family
home. Fifty percent of the time, that client will remain in the
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- hospital until he dies, costing the system 3 times what it could.
Or often, a client who requires emergency housing can be placed
in a hotel for two weeks, only to face a two month wait to
receive placement in a transitional unit, and 3 months there
before permanent housing is found. Such a client can often
progress in his illness to where the initial goal of permanent,
independent housing is no longer viable. The great success that
the Northwest AIDS Foundation has had in meeting the demand for
housing needs has been in large part due to the fact that our
Housing Advocates are able to assess and place individuals
quickly. Just by adding a half-time staff person to work with
the existing full-time person, the Foundation was able to
increase the number of individuals served by 73%. Also, the
advocates have been able to ensure that persons living with AIDS
access already existing housing options available in the
community (Seattle Housing Authority, church subsidized programs,
etc.). Without the staff to counsel, refer and place clients,
available housing goes unutilized.
The Northwest AIDS Foundation has been providing housing referral
and counseling services since 1988 with funds from the Health
Resources and Services Administration, but these monies will
cease at the end of fiscal 1990. We have also begun to access
local funding sources. The Washington State AIDS Omnibus bill
has provided funding for a half-time position for housing
advocacy. But as the number of clients seeking housing
assistance has grown from 190 to over 600 this year, it is clear
that this resource will not enable the Northwest AIDS Foundation
to meet the demand for services. The proposed legislation would
enable us to doso.
Congressman McDermott recognizes that persons with AIDS have a
spectrum of housing needs. These needs range from emergency aid
to prevent homelessness by enabling individuals to remain in
their own homes, emergency shelter and care for the homeless,
rental subsidies for individuals capable of independent living,
community residences for those who cannot live fully
independently, and more intensive care for those who are severely
ill.
The Northwest AIDS Foundation has sought to develop such options,
but is unable to meet the demand. Monies from the Federal
Emergency Management Assistance Program provided over 1,000
bednights to 33 clients last year, an essential part of our
program. Yet over 200 of our clients faced homelessness or
eviction! The City of Seattle, through the Community Development
Block Grant program has provided 15 units of transitional housing
for 1990 which will allow us to place over 60 homeless
individuals. But the federal government has cut this grant by
10%. The transitional program is only as good as the permanent
options that are available. When a client with a history of drug
abuse seeks permanent, federally subsidized housing, he can be
placed only if he is receiving treatment for his addiction and
has a positive rental history. Families, especially women and
Children, who are primarily infected through drug addiction, must
not only meet the treatment criteria, but face a longer waiting
list for a family residence. Clients who are active IV drug
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users have no options except assessment and treatment facilities.
There are few of these and the waiting lists are untenable. We
don't have enough treatment slots for people. The result is that
there are obvious gaps in the-systemfor special populations~
The Northwest AIDS :Foundation can only help these people in a
limited way and for a limited time.
Other options, including group residences and clustered
apartments, all sponsored by religious organizations, maintain
lengthy waiting lists and are increasingly unable to provide the
care needed for a clientele which is living longer.
The proposed legislation would enable the Northwest AIDS
Foundation to expand its current options to:~encompass special
populations as well as maintain its current program of
coordinated efforts ~by local providers.
Finally, Congressman McDermott's bill recognizes the overwhelming
demand for permanent independent housing, and approaches this
need again with a plurality of options.
Being located in a second wave city, the Northwest AIDS
Foundation has certainly seen a change in the face of its
clientele with the arrival of special populations which
necessitate special housing accommodations. Yet even within
these populations, the demand for permanent independent housing
remains the greatest need.
The Seattle Housing Authority has taken great leadership in this
area and can be used as a model housing authority around the
country. Our three most requested programs are dependent upon
them: transitional, federally subsidized permanent, and Section
8 certificates. To date over 70 clients have used the
transitional program, over 100 have been placed in permanent
federally subsidized housing, and over 40 clients have utilized a
Section 8 certificate. Not only are these programs fully
utilized, the waiting lists are growing exponentially.
The proposed legislation would provide local housing authorities
with the ability to rehabilitate multi-unit dwellings to
accommodate people with AIDS - a program already successfully
used to house homeless individuals through the Stewart B.
McKinney Homeless Assistance Act. It would also provide funding
to local housing authorities to provide Section 8 certificates
for people with AIDS. In Seattle, 20 certificates are available
to all people with a terminal illness. There are currently 40
people seeking such a certificate, who wait an average of one
year to receive it. The great interest in the Section 8
certificates stems from the fact that they are much desired by
our clients since they often do not force people to move from
their current residence, something which can be very traumatic
for someone already facing a terminal illness.
Congressman McDermott's bill would also provide funding for
community residences, which could provide services to improve the
quality of life for people with AIDS and so delay or even prevent
the need for more costly institutionalization. In Seattle,
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clients who are semi-independent can have their needs set in a
group residence, but only until their physical needs require more
care than their housemates can provide. At that point they
return to the hospital where they await placement in a nursing
home or adult family home. Again, 50% of the time, they die
while awaiting placement. Additional ~esidences with additional
supportive services would help to alleviate this dilemma and
provide a cost-effective means of appropriate housing.
The Northwest AIDS Foundation supports this proposed legislation
and applauds Congressman McDermott for its comprehensive scope
and pro-active philosophy. The bill is insightful in
realistically assessing the housing needs of people with AIDS and
providing flexibility to create innovative programs; it is
completely feasible in that it utilizes existing housing
providers and empowers them to expand their programs; and it is
completely cost-effective in ensuring counseling and referral
systems which assure the success of any housing program.
We believe that the concepts in HR 3423 are an integral part of
any comprehensive housing legislation. People with AIDS have
unique needs in housing because of the nature of their disease,
as do many other populations within the spectrum of those in need
of housing assistance. It is timely to recognize people with HIV
infection as a constituency. As the Congress begins to discuss
HR 1180, the comprehensive housing bill, Congressman McDermott
has provided the vehicle to reflect the needs of people with
AIDS.
I want to thank you for your time and I urge the adoption of this
legislation.
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1988
Northwest AIDS Foundation
Housing Report
Submitted by
Kurt A. Wueliner,
Housing Coordinator
February 27, 1989
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TABLE OF CONTENTS
Page
Executive Summary
IUUUUUCL1UII 1
Overview of Housing Options. -.
a. Transitional Housing for Persons with AIDS
b. Seattle Housing Authority's Conventional Housing Program
c. Seattle NousingAuthority's Terminally Ill Programnf Section Eight
Certificates
d. The Payne Apartments, Sponsored byflymouth Housing Group
e.'DeWolfe House," Sponsored by the University Unitarian Church
f. The Multifaith AIDS Project House, or "MAPS House"
g. Vincent House, Sponsored by the Sisters of Providence
h. Community Family Home (Rosehedge House), Sponsored by Community
Home Health Care
Nursing Home Options 7
Private Host Homes 8
The Housing Subsidy Program 8
Total Number of Clients Served in 1988 9
Four Client Profiles 9
Prioritization of Need and Some Recommendations 11
Independent Housing
Supportive Care Housing
Transitional Housing
Women's and Pediatric Housing
State Level Advocacy
Conclusion 14
Housing Criteria 15
Housing Projections 16
Glossary 18
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EXECUTIVE SUMMARY
P 1988, 50% of the persons with AIDS or Class IV HIV disease living in King
County requested assistance with housing through the Northwest AIDS
Foundation Housing Prograni,which provides housing assistance to people with AIDS who
meet an established criteria of financial need. The program, in collaboration with NWAF
case management and 13 public and private organizations, was able to satisfy about 76% of
those needs. The goals of the Housing Program (to assist clients in retaining their own
personal living situations; to provide clean, warm, and secure housing appropriate to a
client's needs and desires; and to develop housing options that provide care outside the
hospital environment) are fulfilled by developing a wide variety of housing options, from
rent subsidy to 24-hour supportive care.
However, most of the available housing is at capacity, with waiting lists. Current
resources manage to serve current caseloads, but projections for the future, based on AIDS
caseload predictions, are frightening. By 1991, 1512 people are expected to be living with
AIDS in King County. The historical experience is that 50% will need housing. If only
current resources are available in 1991, only one quarter of those in need could be served.
(See Chart -page 17)
This report details the current housing options available, reviews occupancy rates for
each, provides client profiles, discusses the need for further resource development, and
provides options and recommendations for the future of the housing program.
Independent Living
Options:
o Seek Seattle City levy money to develop an apartment building
* Work with the religious community to develop a rental fund for subsidized
clustered apartments.
o Work to increase the ability of SHA to house PWAs.
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Supportive Care (Dual Diagnosis and 24-Hour Nursing Care)
Options:
* Develop a second adult family home.
e Develop ways to keep current housing at capacity.
o Work to develop a home for the dually diagnosed (i.e., Class IV HIV Infection
plus mental health problems and/or chemical dependency, and/or AIDS related
dementia).
Transitional Housing
Options:
o Seek funding through City of Seattle block grants.
o Seek funding through Federal Emergency Management Assistance (FEMA).
o Seek funding through Emergency Shelter Assistance Program (ESAP).
o Develop funding proposals to the religious con-imunity to support transitional
housing.
Women/Pediatric
o Participate in feasibility studies with Children's Orthopedic Hospital and the
Women and AIDS Task Force.
Housing for WDUs
o Collaborate with POCAAN and NIDAon a needs assessment and direction.
State Level Advocacy
* Add a PWA voice to those advocating low income housing by joining the
Washington Low Income Housing Congress.
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INTRODUCTION
WEAREBUILDINGA
COLL4BOPATIVEAIDS PREVENTION
& CARE NE7WORK THATMAXIMJZES
RESOURCES, FOS TERS HUMAN
DIGNTJYAND ENGENDERS
COMM UNI'IYSTRENG TH SO PEOPLE
WITH AIDS AND THOSE AFFECTED
BYAIDS CAN MAINTAIN THE
HIGHESTPOSSIBLE QUALI7Y OF LIFE.
Statement of Putpose
No~hwestAfDS Foundation
Board of Directors
March 13 1988
T'~ Housing Program of the Northwest AIDS Foundation seeks to develop,
provide and maintain various housing options for low income persons with AIDS.
A primary goal of the program is to assist clients in retaining their own personal living
situation. When this is not possible, the Housing Program provides alternate living
situations appropriate to clients' needs and desires. Hence, the program seeks to provide
housing options for persons in various stages of the disease, ranging from independent
living to twenty-four hour nursing care. Thus, another goal of the program, is to provide
housing options which will provide care outside of the hospital environment. These
housing options are developed to foster human dignity by providing the client with choices
for his/her living situation, and by providing appropriate support structures. They are also
developed to provide a clean, warm and secure living environment.
Eligibility criteria for housing assistance is spelled out in detail in the appendix but, briefly,
a client must be diagnosed with Class IV HIV illness, must demonstrate financial need and
housing need, and be without personal resources.
The Housing Program acts primarily as a means for assessment of client's housing needs
and appropriate placement. Consequently, this also requires housing advocacy, orientation,
moving assistance, and conflict resolution. Therefore, all housing assistance is offered in
collaboration with hospital, agency, and community based case managers who develop and
maintain an overall plan of care for the client.
This report is a current description of the Housing Program. It also provides a prioritiza-
tion of needs, some recommendations, and some questions to guide a vision for the future
of the Housing Program.
This report is prepared for all AIDS housing providers, the Northwest AIDS Foundation
Board of Directors and PWA committee, the Northwest AIDS Foundation staff, and all
those interested in housing for PWAS.
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March of 1988, through the person of the Housing Coordinator, the
Northwest AIDS Foundation (NWAF) enjoys a positive working relationship
with the following housing providers:
1. AIl)S Housing of Washington
2. The Cambridge Apartments
3. Capitol Hill Housing Improvement Program
4. Various Churches:
First Baptist of Seattle
Our Lady of Guadalupe Catholic
Plymouth Congregational
St Mark's Episcopal
University Unitarian
5. City of Seattle
6. Common Ground
7. Community Home Health Care
8. The Emergency Housing Coalition
9. Magnolia Ecumenical Council
10. The Multifaith AIDS Project
11. The Payne Apartments
12. Pioneer Human Services
13. Plymouth Housing Group
14. Seattle Housing Authority
15. Vincent House
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~hb0u1gh1 these housing providers, the following housing options for persons with
AIDS (PWAs) have come available:
A. For independent living:
1. 20 Seattle Housing Authority Section Eight Certificates
2. Seattle Housing Authority Conventional Housing Program
3. Dc Wolfe House (Unitarian Church sponsorship, providing six units)
4. Multifaith AIDS Project (MAPS) Home (5 units)
5. Vincent House (2 units)
6. Payne Apartments (4 units)
7. Cambridge Apartments (8 units)
B. Facilities offering nursing care:
1. Community Family Home (Rosehedge House, sponsored
by Community Home Health Care -6 units)
2. Mt. St. Vincent Nursing Center (2 units)
3. Hospice Northwest (2 units)
4. Terrace View Nursing Home (units as available)
5. Northwest Progressive Care Center (units as available)
6. Columbia Lutheran Center (units as available)
7. The Theodora (custodial care - units as available)
C. Housing Subsidies:
1. Our Lady of Guadalupe Catholic Church: $100.00 per month
2. Plymouth Congregational Church: $200.00 per month
3. St. Mark's Episcopal Church: $200.00 per month
4. General Fund: Memorials, Donations, and Anonymous Gifts
The Deputy Director for Social Services, the Housing Coordinator, and the Housing
Advocate comprise the NWAF Housing Program staff. They are responsible for housing
program development and implementation. As the number of PWAs increases, the Hous-
ing Program will hire additional Housing Advocates to meet the need.
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OVERVIEW OF HOUSING OPTIONS
A brief look at each of the current housing options, the numbers of clients served
and those on waiting lists will provide a basis for a prioritization of needs, some
recommendations, and some questions to guide a vision for the future of the NWAF
Housing Program. Some of the options described below (Payne Apartments, the DeWolfe
House, Rosehedge, and others) had an occupancy rate in the 60- 75% range. Much of this
was due to start-up time. All units are now at 100%.
a. Transitional Housing for Persons with AIDS
These units, first located at the Morrison, and now located at the Cambridge Apartments,
have housed 27 clients in 1988 and a total of 36 clients since their inception in 1986. These
units are provided by the Seattle Housing Authority. These units provide emergency hous-
ing for clients until permanent housing can be found (approximately 60-90 days). Clients
are charged $35.00 per month, and the remainder is subsidized by NWAF with funds from
the City of Seattle. Two more units will be added for the first six months of 1989, bringing
the total to 8 units through June, 1989, and 9 units through December, 1989. There was an
average waiting list of 4 clients per month through 1988. Of 1924 bed nights available in
1988, 1748 were used, maintaining an occupancy rate of 91%. The average length of stay
per client was 65 days.
b. Seattle Housing Authority's Conventional Housing Program
Many clients (99%) meet the eligibility criteria for this housing program, which enables
them to live in apartment complexes owned and managed by the Seattle Housing Authority
(SI-IA). SI-IA requires that all their clients meetone of three of the following federal
regulations: they must face involuntary displacement; live in substandard housing; or pay
over half of their income toward rent. If they are approved for conventional housing they
are required to pay approximately 1/3 of their income toward rent in an SI-IA housing com-
plex. An average waiting period from application to occupation of one of these units is 4-5
months. To date, 25 PWAs;have been housed throughthis program. An average of 7
clients per month apply for this program.
At this time, this program offers the most expedient means to house a client in a single inde-
pendent unit.
c. SHA's Terminally Ill Program of Section Eight Certificates
SHA's Section Eight Program allows a client to live in a unit of his/her own choice, as long
as the unit meets all Section Eight criteria and the federal regulations. Originally this pro-
gram could take as long as one year on a waiting list. Responsive to the needs of PWAs,
SHA developed the Terminally Ill Program (TIP), which provides 20 Section Eight certifi-
cates for those diagnosed with any terminal illness and who meet the eligibility criteria.
Hence, other than PWAs can apply. Currently, 18 of the 20 certificates are being used by
PWAs. In this program, clients are asked to pay approximately 1/3 of their income toward
rent. This is the most requested housing program, with a current waiting list of 63 people.
Applications are currently processed at the rate of one per month. With such a lengthy wait-
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ing list, the Housing Program is recommending use of SHA's Conventional Housing Pro-
gram over the use of TIP Section Eight certificates.
d. The Payne Apartments sponsored by Plymouth Housing Group
On June 20, 1988, Plymouth Housing Group agreed to set aside 4 units at the Payne Apart-
ments in downtown Seattle for use by PWAs. Clients pay $125.00 per month, and the Hous-
ing Subsidy Program pays $75.00 per client per month. NWAF has placed 10 clients in
these units during 1988. Of 776 bed nights available, 640 were used, maintaining an 82% oc-
cupancy rate. The average length of stay was 64 days per client. There is an average of one
client per month on the waiting list. If NWAF is unable to keep the census of 4, Plymouth
Housing Group will fill the units, to be returned when needed.
e. `De Wolfe House' sponsored by the University Unitarian Church
The University Unitarian Church opened this six unit home in August of 1988. This group
living situation was developed to provide a supportive environment for persons with AIDS.
There is no resident manager living at the home, but through case management services,
regular group meetings with the Housing Advocate, regular meetings with a licensed
therapist, and with participation from liaisons from the Church, the residents have managed
to create a mutually respectful community which promotes personal freedom, yet remains a
common source of support.
Since its opening, it has provided housing for 10 clients. Of 918 available bed nights, 689
were used. This is an average occupancy rate of 75%. The average length of stay was 69
days per client. Residents must be able to pay $125.00 per month, and be willing and able
to live cooperatively in a group environment. There is an average of 1 client per month on
the waiting list.
f. The Multifaith AIDS Project House, or `MAPS House'
In March of 1988, the Housing Coordinator was approached by a private individual who
had recently lost a friend to AIDS. Seeking both to care for other persons with AIDS, and
to make a memorial to her friend, this individual offered her house as a group home for per-
sons with AIDS. At the same time, the Multifaith AIDS Project was forming, and stated
that'one of its goals was to provide housing for persons with AIDS. With the guidance of
the Northwest AIDS Foundation, MAPS assumed sponsorship and management of the new
group home in October of 1988. This home is located on Beacon Hill, and like Dc Wolfe
House, clients are requested to pay $125.00 for the monthly rent.
Unlike Dc Wolfe House, the MAPS Home does provide a resident manager who lives at
the home and maintains various responsibilities, including group facilitation, conflict resolu-
tion, collection of rent, etc. The Housing Program placed 5 clients at MAPS in 1988. Of
430 available bed nights, 268 were used, averaging an occupancy rate of 62%. The average
length of stay was 54 days per client. This rate is low due to the late opening of the home
during the last quarter of the year. There is an average of one client on the waiting list per
month.
Finally, it should be noted that the Multifaith AIDS Project of Seattle is an ecumenical
church organization, with a non-profit status, comprised of several local churches. They are
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dedicated to the pastoral care of PWAs. This means that while they are concerned for the
total well being of the PWA, they have a special emphasis on the spiritual dimension. For
MAPS, this expresses itself in as simple a way as practical support, or as intense as spiritual
direction. It must be understood that MAPS has no intention to proselytize, evangelize, or
convert any PWA.
g. Vincent House, sponsored by the Sisters of Providence
The Sisters of Providence own and manage an apartment complex above the Pike Place
Market. These are new and very well kept units for individuals, with an emphasis on com-
munity and mutual support. The Sisters are dedicated to providing low income housing for
the elderly. They have agreed to set aside 4 units for PWAs as the units become available.
In 1988,3 PWAs were placed there, the first on May 4, 1988. The average length of stay per
client is 243 days, with occupancy rate at 100%. This housing option is a permanent place-
ment as rooms become available. Because initial placements are still there, the occupancy
rate is high. There is no official waiting list, but when an opening is offered, there is no dif-
ficulty in making a placement.
h. Community Family Home (Rosehedge House), Sponsored by
Community Home Health Care
This group home differs from Dc Wolfe House and the MAPS Home in that it is licensed
by the Department of Social and Health Services as an "Adult Family Home," which offers
24 hour supportive care for six persons with AIDS. This care can include IV therapy,
hospice care, volunteer support, case management services, physical therapy consultation,
and home health aide services. Eligibility criteria include the need for nursing care, estab-
lished financial assistance (GA-U, SSI, SSDI), power of attorney for health care and finan-
ces, a legal will, and the ability to live within a group environment. Clients are expected to
pay for their care with their monthly assistance check, retaining a small amount for personal
use. All meals are provided, and each client has access to a personal refrigerator.
The home itself is reimbursed through a mixture of State and Federal funding: Adult Fami-
ly Home Special Services, and Adult Family Home Private Duty Nursing.
Since its opening on June 20, 1988, Rosehedge House has served a total of 18 clients, with
an average of four clients per month on the waiting list. Of the 1164 patient days available,
822 were used, with an average 70% occupancy rate. The average length of stay per client is
40 days. An 82% occupancy rate is needed for financial viability according to Community
Home Health Care. The lowest number of residents was 1; the highest, 6. Of the 48 clients
on the waiting list who were not placed, 16 died while waiting, 12 clients' health improved
to the point of returning home, 20 clients chose alternate care placements, including
hospice, nursing homes, hospitals and private homes. There have been concerns about
maintaining the census at Rosehedge and much has been done to improve that situation.
The placement process has been streamlined and all care providers are intent on educating
PWAs on the services of the home. Initially seen as a "place to go and die," prospective
clients now understand that Rosehedge House is a community environment where "they
can go and live." Perhaps the largest barrier to maintaining a full census is the unpre-
dictable nature of the disease as reflected in the changing medical status of PWAs, over
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which there is no control. However, it is projected that as the number of PWAs increases,
the full census at Rosehedge will be maintained.
Finally, it must be noted th~at as a demonstration project, funded by private organizations in-
cluding NWAF and reimbursed through state and federal monies, Rosehedge House is con-
tinually evaluated through the Seattle/King County Department of Public Health.
NURSING HOME OPTIONS
The Housing Program facilitates placement of PWAs into the following nursing
homes:
Mt. St. Vincent Nursing Center
Terrace View Nursing Center
Northwest Progressive Care Center
Columbia Lutheran Center
Hospice Northwest
The Theodora
Benson Heights
Mt. St. Vincent Nursing Center has agreed to care for up to four PWAs whose prognosis
for life expectancy is 2-3 months. No clients were placed there in 1988, as these beds were
made available in the final quarter.
Terrace View Nursing Center is a skilled nursing facility and accepts PWAs as beds are
available. There are no beds reserved, however Terrace View has been a very viable place-
ment option. Six PWAs received care at Terrace View during 1988.
Northwest Progressive Care Center accepts PWAs for a 100 day maximum stay. They offer
skilled nursing care for short term clients. There are no beds reserved and three PWAS
were housed there in 1988.
Columbia Lutheran Center offers two beds of hospice care for PWAS, who must have a
physician's prognosis of terminal illness lasting two months or less. These beds are avail.
able through the Nursing Director. PWAs may also be placed on the waiting list for skilled
nursing beds, but there is currently a waiting list of 145. Two PWAS were placed at Colum-
bia Lutheran Center in 1988.
Hospice Northwest has two beds reserved for PWAS based upon availability. Again, a
physician's prognosis for terminal illness lasting two months or less is required. In 1988, 17
PWAs were placed at Hospice Northwest.
The Theodora is a custodial care facility where residents must be semi-independent or inde-
pendent for placement. The majority of residents there are elderly, but they will accept
clients who are disabled and meet the low-income guidelines of HUD. Hence, the
Theodora will accept PWAS for placement. Services include a staff nurse, medication
monitoring, bath aides, Cabrini Health Clinic, and a dental clinic. To date, no clients have
been placed at the Theodora.
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Benson Heights is an intermediate care facility, which like the Theodora, does not provide
twenty-four hour nursing care. Placement requires a diagnosis of psychiatric disorder.
PWAs may be placed as beds are available. During 1988, one client was placed at Benson
Heights for a very brief stay.
PRIVATE HOST HOMES
occasionally a private individual will contact the Housing Program to share his/her
residence with a PWA. The Housing Program acts as a facilitator in this process
by bringing the host together with the PWA. Guidelines have been established which
encourage the host to educate him/herself in regards to AIDS and AIDS care-giving, to
establish a written contract regarding rental fees and behavior requirements. The Housing
Program staff will aid in conflict resolution, or make appropriate referral if necessary. In
1988, three clients were placed in private host homes. There is no official waiting list.
THE HOUSING SUBSIDY PROGRAM
A5 stated in the introduction, a primary goal of the Housing Program is to assist
clients in retaining their own personal living situation. At times, clients are
overcome with medical bills and other living expenses and may be unable to meet their
rental expenses. Various churches provide donations on a regular basis to help PWAs with
their housing needs. The church community of Seattle First Baptist provides a direct
housing subsidy to a client recommended by the housing program. The church provides
both rental assistance and other services on a one-to-one basis. In addition to the churches,
private individuals and organizations have made donations, memorials and anonymous gifts
which are restricted to helping PWAs with their housing needs. This program began in
March of 1988 and has assisted 43 clients. A brief accounting for 1988 follows.
St. Mark's Episcopal Church
$2200.00 Deposited, 21 PWA Requests, Balance = $200.00
Plymouth Congregational Church
$2400.00 Deposited, 23 PWA Requests, Balance = $300.00
Our Lady of Guadalupe Catholic Church
$1000.00 Deposited, 12 PWA Requests, Balance = $0
Gethsemane Lutheran Church
$ 454.50 Deposited, 10 PWA Requests, Balance = $ 0
General Fund (Private Donations)
$2609.36 Deposited, 26 PWA Requests, Balance = $0
Totals:
$8663.86 Deposited, 92 PWA Requests, Balance = $500.00
Some clients made multiple requests for housing subsidies. Therefore, although a total of
92 requests were made, a total of 43 clients were served.
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TOTAL NUMBER OF CLIENTS SERVED IN 1988
100 Clients placed in independent housing
18 clients placed at Rosehedge House
29 clients placed in long term/short term care facilities
43 clients received housing subsidies
Tl~se figures do not reflect the total number of clients who requested assistance
and received advocacy through the Housing Program. The total number seeking
assistance for 1988 is approximately 250. Some of these were placed on waiting lists; others,
ineligible for the NWAF Housing Program, were given referrals to other possible sources
of help.
FOUR CLIENT PROFILES
T° protect the confidentiality of NWAF clients, names have been changed in the
following descriptive profiles.
Andy
Prior to his acceptance into the Seattle Housing Authority Terminally Ill Program of Sec-
tion Eight Certificates, Andy had been working in a Seattle deli. As his physical condition
worsened, Andy lost his job and found housing on a temporary basis through the kindness
of a friend, whose space and resources were limited.
Andy is 32 years old, black, with no financial resources. A black minister in his local com-
munity referred Andy to the Northwest AIDS Foundation, where the Housing Program was
able to place him in an emergency unit at the Cambridge Apartments. Through case
management services, Andy received financial assistance, but his health steadily worsened,
with multiple hospitalizations. His case manager thought it best to place Andy on the wait-
ing list for Rosehedge House, where he could receive twenty-four hour nursing care. But
slowly his health improved to the point where his physician recommended independent
living. At this point, Andy was notified that his Section Eight application was being
processed, and after orientation, advocacy, apartment location, and moving assistance
through the NWAF, he was placed in permanent housing. A period of five months passed
from his initial placement at the Cambridge to his permanent residence through Section
Eight.
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Dennis
Dennis isa 34 year old white male who lived independently and held ajob prior to his refer-
ral to NWAF. Diagnosed with PCP (pneumonia) and hospitalized, Dennis had every inten-
tion of maintaining his apartment when discharged. However, upon his return home, he
was notified of his roommate's intention to vacate. Unable to afford the rent due to his
limited income, Dennis first considered finding other employment, but his health would not
permit. His hospital case manager suggested he find alternate housing through the NWAF
Housing Program. Dennis readily admitted his emotional struggle in coming to grips with
the disease and knew that he needed to live in a supportive environment. Dc Wolfe House,
sponsored by tho University Unitarians, could provide such an alternate living situation.
Dennis moved into the home in October, 1988, and through regular house meetings and
continued support through other agencies, Dennis is happy. and thriving. Dennis was placed
within one week of his application.
Alan
Prior to his initial contact with NWAF Alan, a 28 year old white male, lived in his car on the
streets of Seattle. He had been employed full time until his health no longer permitted, and
admitted to a history of chemical dependency. Alan's case manager developed a com-
prehensive plan of care and referred him to the Housing Program for immediate place-
ment. Alan was placed at the Cambridge Apartments until permanent housing could be
found. Because Seattle Housing Authority's Conventional Housing Program can take many
months to process, Alan was given the option of moving into the Payne Apartments for
$125.00 per month. Having been linked to financial assistance through his case manager,
Alan jumped at the chance. These apartments are owned and operated by the Plymouth
Housing Group and are located in downtown Seattle on 7th Avenue. Alan had received the
services of Stonewall Recovery Program and was seeking to live a "clean life." Because he
wished to live closer to his medical providers and support services, it was decided to move
Alan back to an emergency room at the Cambridge on Capitol Hill. Approximately one
month after Alan's second placement at the Cambridge, he was accepted into an SHA high-
rise, where he currently lives.
Ben
Prior to his admission to Rosehedge House in late June, Ben had remained on an impatient
ward at Harborview Medical Center for over one month. He had been unable to return to
his previous living situation because of his neurological impairments and his need for
skilled nursing care, which included very frequent dressing changes. Admitted to
Rosehedge with a short prognosis, Ben thrived in the communal atmosphere since the day
its doors opened in June, 1988. He had no further bouts of life-threatening pneumonia.
Ben had many functional impairments and required assisted transfers to and from his wheel-
chair. Nevertheless, he organized the first Rosehedge Fourth of July Picnic at the facility.
He also planned and hosted a "film festival" in his room. Two months ago, he inherited an
electric wheelchair from a former resident and became much more independent.
Although Ben has died, he lived months longer than his physician expected.
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PRIORITIZATION OF NEED, OPTIONS, AND SOME
RECOMMENDATIONS
Independent Housing
The Need: According to current statistics, 92% of those waiting for housing assistance are
seeking an independent living situation through SHA's Section Eight TIP and Conventional
Housing. 3% are waiting for emergency rooms at the Cambridge and 5% are waiting for
some form of group living. Hence, the greatest need surrounds the desire for independent
living, both in terms of personal preference and financial feasibility.
Option 1: As recommended in the first housing report, submitted April28, 1988 by Richard
Kubiak, an apartment building of one bedroom and studio apartments would serve to meet
the need. Monies for such a project could be available through the Seattle City Levy Fund
inone to two years. The Housing Coordinator has met with a representative from Capitol
Hill Housing Improvement Program to discuss this proposal. Further development would
require a partnership/consultation fee. However, similar programs in other cities have not
fared well.
Option 2:-Work with the religious community to create a fund through church donations
which would provide subsidized clustered apartments in already existing complexes. The
fund could pay two-thirds of the rent, and the client one-third.
Option 3: Work with Seattle Housing Authority for:
1) An increase in the number of Section Eight certificates and
2) A more expeditious application process for PWAs seeking
conventional housing.
It is the recommendation of the Housing Program to pursue options 2 and 3.
Supportive Care Housing
The Need: Since the inception of Rosehedge House, a total of 66 clients in need of twenty-
four hour nursing care have applied for admittance to the htme. A total of 47 clients were
placed in long term/short term facilities, but many died while waiting for placement. The
second greatest need lies in twenty-four hour supportive/nursing care.
Among those clients seeking this care, eight clients in 1988 were diagnosed with multiple
needs - AlDSplus mental health problems and/or chemical dependency and/or AIDS re-
lated dementia. These clients cannot live independently due to their multiple needs, and
the supervision needed is not currently available in any of NWAF's housing options.
It is projected that 27 clients will require housing for dual diagnosis by the year 1990. The
opening of the longterm care facility with 35 beds in 1990 will help alleviate this shortfall.
However interim solutions are needed, and it is projected that this facility will not be able
to handle the entire caseload.
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Option 1: Develop an interim project which would accommodate those clients in need of
twenty-four hour nursing care such as a second Adult Family Home, which is a strong pos-
sibility.
Option 2: To aid in maintaining a full census at Rosehedge House, the'role of the Housing
Advocate could be expanded to assess clients in their long-range housing needs, presenting
long/short term care options at time of initial assessment.
Option 3: Work in collaboration with public and private entities to develop a home for
PWAs with multiple needs. Currently, through the mediation of Common Ground, the
Magnolia Ecumenical Council is strongly considering sponsorship of such a home. Pioneer
Human Services has expressed a similar interest.
It is recommended that all these options be pursued.
Transitional Housing
The Need: With an average waiting list of four clients for emergency (interim) housing at
the Cambridge, it is obvious that the need always exceeds the demand. Although three
more rooms will be available in 1989, there is no doubt that transitional housing will remain
a priority.
Option 1: Continue to seek funding from the city through the City Block Grant proposal.
By 1991,25 units willbe needed to house 125 clients. The Foundation should determine
the~number of units needed according to the Housing Projections (see attached sheet).
Option 2: NW-AFs membership in the Emergency Housing Coalition enables the Housing
Program to access Federal Emergency Management Assistance (FEMA) monies and Emer-
gency Shelter Assistance Program (ESAP) monies for emergency vouchers. Pursuing these
tworecommendationswould serve to address the problem by mid-1989.
Option 3: An additional source of funding for emergency housing can be found in an ex-
panded housing subsidy program. Currently within the King County area, four churches
donate on a regular basis. Most main line denominational churches reserve monies for
their social justice agendas, to be distributed as recognized needs appear. As more church
congregations are affected by AIDS, it would be productive to approach churches to help
with housing needs.
It is recommended that all these options be pursued.
Women's and Pediatric Housing
The Need: In 1988, the Housing program received three requests from female PWAs seek-
ing assistance. These needs were met through current options. A recent report from
Childrens Hospital and Medical Center in Seattle predicts that 15-20 children will be diag-
nosed with AIDS statewide in 1989.
Recommendation: NWAF Housing Program should remain an active participant in the
feasibility studies for pediatric AIDS residential facilities, sponsored by Childrens Hospital
and MedicaLCenter. The current number of reported cases does not warrant opening such
a facility at this time, and children with AIDS are now placed in foster home situations. It
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should be noted, however, that according to Childrens Orthopedic Hospital (the lead agen-
cy in pediatric AIDS) there is currently a general lack of foster care options.
As the number of women with AIDS increases, it would benefit the Housing Program to
develop a needs assessment profile in collaboration with the Women and AIDS Task Force.
This is especially true for mothers and children, because presently no emergency housing
options exist for those situations where a mother and child both need housing, assistance,
and supportive care.
Housing Facilities for IVDUs
The Need: None of the current housingprograms are;available to people actively using
drugs. However, projections are that this population will represent an ever-increasing per-
centage of PWAs and a population which has very fewiesources. It is estimated by the Seat-
tle/King County Department of Public Health that of 12,000 IVDUs in King County, 7-8%
are seropositive, or 840 - 960 individuals. Itis hard to measure how this number will grow,
since projections for seroconversion are being developed, but this will -- in the not too dis-
tant future -- represent a significant unmet need.
Recommendation: The Northwest AIDS Foundation Housing Program should work closely
with the National institute for Drug-Abuse (NIDA) education program participants and
other agencies active in drug treatment-and residential fields to monitor this trend, to
recommend who should take a lead agency role, and to develop resources for this need,
such as a home for the dually dignosed.
State Level Advocacy
The Need: As homelessness continues to grow throughout the United States, there is no
doubt that homeless PWAS in King County will continue to be affected. NWAF supplied
housing for 27 homeless clients in 1988,5% of all PWAS. Based on the projections for King
County, NWAF can look forward to providing housing for 39 homeless PWAs in 1989.
Housingremains the most fundamental of human rights. And while many PWAS have
needs for assistance beyond housing, no need can be met efficiently or humanely in the ab-
sence of a safe and secure permanent home. Our public policy makers in Olympia must
continually hear and understand the need for low income housing for PWAS.
Recommendation: The Northwest AIDS Foundation should join its voice with that of other
community based non-profit organizations through membership in the "Washington Low-
Income Housing Congress" toadvocate for PWA housing needs-in Olympia. Currently
there is no voice for PWAS on the Congress.
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CONCLUSION
T1~ Housing Program is responding to PWAs and meeting their housing needs
efficiently and smoothly. Many clients, however, remain without permanent
housing. And while they wait, their health often deteriorates, resulting in a need for
housing other than that for which they initially applied. And given the changing face of
AIDS, we will soon see the need for residential facilities able to care for PWM with
multiple needs, women and children with AIDS, and adult day care centers. This demands
both a comprehensive housing plan for the next five years and additional Housing
Advocates for direct service to the increasing number of clients.
The Housing Program of NWAF is viewed is innovative, resourceful and efficient. Its supe-
rior standard of service will not only be maintained, but increase through a renewed vision
and dedicated work.
- 14-
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191
CRITERIA FOR HOUSING ASSIST4NCE
Client must have confirmed HIV, class IV infection and be linked to case management
services.
II Client must demonstrate financial need in all following areas:
A. Annual income should not exceed $12,550.
B. Personal assets cannot be liquidated within a six month period.
C. No personal resources areaccessible, i.e., family home, friends, significant other,
etc.
III Client must demonstrate housing need in one of the following areas:
A. Immediate need ofplacement (short term, hotel/motel voucher).
B. Interim need of placement (emergency transitional apartment at Cambridge).
C. Permanent need of placement (all other housing options).
D. Financial need to retain placement (housing subsidies).
These subsidies are available only after options A, B, and C are exhausted.
1. Two kinds of limited subsidies are available:
a. An on-going subsidy in which the funding source makes direct
arrangements with the client.
b. One time emergency subsidies which are subject to both availability
and amount of funds.
2. Clients are requested to pay 30% of their income, or $125.00, whichever is
greater, toward the payment of their rent.
Housing subsidy will pay the balance to a maximum of $200.00.
3. Requests for funds greater than $200.00 must be approved by the client's
Case Manager and authorized by the Housing Coordinator/Resident
Advocate.
IV Clients seeking housing assistance through Seattle Housing Authority must meet one of
the following Federal Housing "Preferences':
A. Client is being involuntarily displaced.
B. Client is living in substandard housing.
C. Client is paying more than 50% of his/her income toward rent.
V All requests for housing assistance (placement and/or financial) must be made in
application form and submitted to the Housing Coordinator/Resident Advocate.
- 15 -
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NORTHWEST AIDS FOUNDATION PROJECTIONS
February27, 1989
presently, 50% of the people living with AIDS are requesting housing assistance
through the Northwest AIDS Foundation. Currently the Foundation has been able
to ensure subsidized housing for approximately 76% of those people, or 28% of the total
living population. The goal of the Foundation is to increase the number of housing
assistance options to meet the needs of all those requesting housing assistance.
Recognizing that there are different needs and desires among people living with AIDS, we
are trying to identify a wide variety of housing options.
Assumptions: * In 1988 in Transitional Housing," six units were available, 27 clients
served for an average of 5 clients per room; five times the number of
units equals the number served.
* In 1988 in "Housing Subsidies," 17% of persons living with AIDS were
served at an average of $94.00 per client; $94 times 17% of the
projected number of persons living with AIDS.
* In 1988 in `Conventional Public Housing," 3% of the population living
with AIDS was served; 3% times the projected numbers.
o In 1988 in "Section Eight Public Housing," 20 certificates were avail-
able and served 25 clients averaging 1.2 clients per certificate; number
of certificates times the average number of clients.
* In 1988 in "Shared Homes," eleven units were available and served 18
clients averaging 1.6 clients per unit; number of units times the
average number of clients.
* In 1988 in "Rosehedge House," six beds served 18 clients; total num-
ber of available bed nights divided by the average length of stay (40
days) times a 95% occupancy rate.
o In 1988 in "Nursing Homes," ten beds were available and served 29
clients averaging 2.9 clients per bed; number of beds times the
average number of clients.
* In 1988 in "Dual Diagnosis," no clients were served, no beds were
available. It is estimated that 1.5 clients will occupy one unit per year.
Projections of people living with AIDS in Seattle/King County Area
Th usa 16
PAGENO="0197"
HOUSING OPTIONS AND PROJECTED HOUSING NEEDS
1988 1989
Housing Option #Clienta #Units #Units Shortfall #Clients #Units #Unlts Shortfall
Served Available Needed to be Available Needed (PROJECTED)
Served
Transitional Housing 27 6 6 0 45 9 9 0
Housing Subsidies 43 $8663 $8663 0 62 $6000 $12,408 $6408
Conventional Public Housing 15 Unknown 15 0 23 Unknown 23 0
Section 8 Public Housing 25 20 20 0 48 20 40 20
Clustered Apartments 13 7 7 0 27 7 15 8
Shared Homes 18 11 11 0 29 11 18 7
Rosehedge House 18 6 6 0 104 6 12 6
Nursing Homes 29 10 10 0 41 10 14 4
Dual Diagnosis 0 0 6 6 11 0 6 6
Totals 190 75 81 6 390 78 137 51
% Population to be served 28 50
% Population requesting housing 50 50
1990 1991
Housing Option #Clients #Units # Clients #Units
to be Needed to be Needed
Served Served
Transitional Housing 75 15 125 25
Housing Subsidies 89 $17,672 120 $24,158
Conventional Public Housing 33 33 45 45
Section 8 Public Housing 60 50 72 60
Clustered Apartments 36 20 50 28
Shared Homes 36 23 46 29
Rosehedge House 156 18 202 24
Nursing Homes 52 18 69 24
Dual Diagnosis 16 11 27 18
Totals 553 188 756 253
% Population to be served 50 50
% Population requesting housing 50 50
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GLOSSARY
Clients NWAF Housing Advocacy services are limited to persons diag-
nosed with aass Four HIV infection, persons with AIDS or
disabling ARC.
Independent Living Living in an environment with minimal assistance and without
the need for 24 hour medical care or supervision.
Housing Options The Various Housing situations available for eligible clients
seeking independent housing, nursing care, or financial (rental)
subsidy.
Transitional Housing Emergency housing limited to 60 days provided for clients who
are waiting to be placed in a permanent living situation.
Occupancy Rate The proportion of days housing units were filled compared to
the total number of days available.
Group Living A facility in which prWate rooms are available, but common
areas, i.e. - living room, kitchen, bathroom, are shared.
Resident Manager A hired residential facility manager who rooms and boards at
the facility.
Skilled Nursing Care Individualized nursing care for chronically ill patients who are
unable to reside at home.
Hospice Care Individualized nursing care for terminally ill patients.
Initial Assessment An interview by NWAF at the point of first referral to the
Housing Advocacy program for the first assessment of a client's
housing needs.
Emergency Vouchers Vouchers provided by FEMA for clients in need of immediate
emergency shelter.
Case Management Professional planning and management of clients' financial,
emotional, legal, health, and home care needs.
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AIDS ACTION
COMMITTEE
of Massachusetts, Inc.
131 Clarendon Street, Boston, MA 02116 E 617~437'6200
TESTIMONY ON THE AIDS HOUSING OPPORTUNITIES ACT (H.R. 3423)
A~t a hearing of theSubcommittee.on~HoUSing and Community
Development of the Committee on Banking, Finance and Urban Affairs
Wednesday, March 21, 1990
By
Robert Greenwald
Manager, Public Policy, Legal and Housing Programs, AIDS ACTION
Clinical Director, AIDS Law Clinic, Harvard University
1. INTRODUCTION
Housing is a basic need for everyone. For people living with
AIDS it provides an essential link to the outside world, a base
from which to receive services, care and support. Given this fact,
statistics highlight the extent to which we are experiencing a
housing crisis within the crisis of AIDS.
* It is estimated that nationwide at least 20,000 people with AIDS
are homeless.
* An estimated 10 to 15 percent of homeless people may be infected
with HIV, although the rate is much higher in some cities. (In
Boston, it is estimated that 30% of our homeless people are
infected with HIV.)
* In many states, over 20% of people with AIDS in hospitals are
there because they are homeless. (In Massachusetts it is estimated
that over 30% of people with AIDS are in acute care hospitals
because they have no community-based or residential alternatives
available to them.)
* People infected with the human immunodeficiency virus who are
not literally on the streets are often a step away from
homelessness. The average person with AIDS/ARC in Boston,
Massachusetts, is living on Social Security or Disability Insurance
with an average income of $525.00 per month. This is in a city
where the average rental cost of a one-bedroom apartment is over
$500.00.
* The AIDS ACTION Committee of Massachusetts has over two hundred
and fifty clients, twenty five percent of its caseload, who are
either homeless or in imminent danger of homelessness. Due to both
state and federal housing subsidy cutbacks and projected AIDS case
loads the number of clients in desperate need of housing is
expected to climb to over one thousand by the end of 1990.
AIDS Information: 617' 536'7733 E Toll Free (MA): 1'800'235'2331
PAGENO="0200"
196
Housing problems for individuals infected with the human
immunodeficiency virus arise in a variety of ways. Many
individuals are illegally evicted and are not aware that this type
of discrimination is often in violation of federal and state fair
housing laws. For others, lost income from illness creates an
inability to pay the rent or mortgage. Some are hospitalized and
their already unstable living arrangements fall apart. Some had no
home to begin with, lived on the streets, and now that they are
unable to continue to live on the streets live in hospitals or
shelters. Abandoned children spend their lives in hospitals
because no foster home will take them. Women with children are
barred from group homes. The scope of these problems is vast and
the solutions are difficult.
The lack of appropriate and affordable housing is one of the
major problems of managing the AIDS epidemic. Presently, there are
few options other than an independent apartment for those who are
healthy enough and can afford it, shelters for those who can't, and
acute care hospitals. The homeless of tomorrow are being created
by today's failure to provide adequate housing options for
thousands of people with HIV disease. These options include the
development of a broad continuum of housing models, including
independent, supervised, congregate, transitional, and hospice
housing. The AIDS Housing Opportunities Act represents an
important step forward toward addressing the AIDS housing crisis.
2. RESOURCES FOR AIDS HOUSING DEVELOPMENT
The AIDS Housing Opportunities Act calls for the allocation of
resources for the creation of both affordable and supported housing
options for individuals living with AIDS. In part, the Act calls
for the establishment of resources, within already existing Section
8 and HcKinney Act programs, for the development of permanent
housing for persons living with AIDS. This is an essential
initiative given the fact that HUD has continually refused to
permit funding for housing for people with AIDS under Section 8
programs, Section 202 and the McKinney Homeless Assistance Act --
housing programs designed to aid in the development of special
needs housing, housing for the homeless and housing for those in
imminent danger of homelessness.
In the context of Section 202 and HcKinney, MUD has summarily
denied proposals on four grounds: 1) people with AIDS and ARC are
not physically handicapped under the Agency's definition of the
term; 2) people with AIDS don't live long enough to qualify under
the statutory definition of impairment; 3) the disease is not of
such a nature that the ability to carry on daily functions would be
improved by more suitable housing conditions; and, 4) there is a
policy against permitting the development of housing for targeted
populations.
In Boston, in 1989, Jewish Community Housing Corporation in
collaboration with AIDS ACTION, American Jewish Congress and the
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197
Combined Jewish Philanthropies, submitted a proposal to develop
eighteen units of housing for people with AIDS under Section 202.
The application did not receive a complete review but was found
"unacceptable for further processing because the propqged occupants
of the project, persons with AIDS, are ineligible."~ The ~eñial
letter goes on to state that the reason for the determination of
ineligibility is based upon the statutory definition of handicapped
which reads, in part, "an impairment which is expected to be of
long-continued and indefinite duration." (See attachment "A")
In the context of Section 8, HUD's policy of exclusion, has
thwarted attempts by both state housing officials and AIDS service
organizations to design creative housing initiatives for easing the
AIDS housing crisis. Massachusetts state officials, for example,
recognized that due to the length of already established section 8
waiting lists people with AIDS were in effect excluded from the
program, as waiting lists far exceeded average life expectancies.
To overcome this constructive exclusion, and in recognition of the
growing crisis, the State's Executive Office of Communities and
Development agreed to set-aside twenty section 8 certificates for
individuals with AIDS. They did so in the hopes that it would
encourage other local housing authorities to follow suit and thus
quickly create a network of AIDS housing opportunities throughout
the state. In turn, AIDS ACTION, along with other AIDS service
organizations throughout the state, agreed to provide case
management services to individuals housed with the certificates
that would include meal delivery services, transportation, home-
based care, etc. It was a promising solution to a growing crisis
that represented little to no cost to government.
The proposal, however, required approval from HUD as it again
represented a variation from traditional preference categories as
defined by MUD -- categories which purportedly do not allow for
targeted set asides. The Massachusetts Section 8 set aside
proposal was rejected. (See Attachment "B") Massachusetts was
forced to carry out the program with its own state-based resources
or through local preference authorizations. This approach,
however, could never match the potential success that a MUD
sponsored set-aside program would have achieved.
HUD's policy of excluding persons with AIDS and ARC from
access to Section 8, McKinney Act, and Section 202 programs must be
reversed. Their definition of handicapped contradicts all other
federal program definitions. Their belief that people with AIDS
could not benefit from more suitable and structured housing options
is incorrect. A look at the few congregate and supported housing
models developed throughout the country for people with AIDS are a
testament to this fact. MUD's denial of Section 202 proposals,
based on the belief that people with AIDS do not live long enough
to qualify for Section 202 funding, is erroneous. HUDhas stated
that the same standards will apply for exclusion from McKinney
funding. This exclusion is based on unwarranted stereotypes of
persons with AIDS/ARC, many of whom are liyknq with their
disability. Also, given the development of new treatment options
PAGENO="0202"
198
AIDS is rapidly becoming a chronic illness.
The AIDS Housing Opportunities Acts provisions calling for
the allocation of $35 million in McKinney Act funds goes a long way
toward addressing a critical need and toward dispelling erroneous
assumptions about ineligibility. This authorization, along with
the proposed $135 million for grants to states, localities and non-
profit organizations to develop and operate permanent supported
housing settings, represents a major first step in closing the gap
between the housing need and availability of resources. The AIDS
Housing Opportunities Act allocation of 3,000 additional section 8
certificates for use by persons living with AIDS will in fact
represent some of the first section 8 certificates obtained by
individuals with AIDS in many states. It provides desperately
needed housing assistance while sending a message that in an
emergency situation, where there is a rapidly growing crisis or
epidemic, targeted usage of certifiôates is not only acceptable but
necessary. (We have seen such targeted development for elder
populations and the chronically mentally-ill.)
3. HOMELESS PREVENTION, EMERGENCY AND TRANSITIONAL HOUSING
Homeless prevention efforts are essential if we are to
successfully address the growing AIDS housing crisis. If we do not
focus on prevention, because of the economic realities of a
diagnosis of AIDS, we will continue to see dramatic increases in
the numbers of homeless people who are infected with this disease.
Also, for individuals with AIDS or ARC, homeless prevention serves
another important function -- the ability to remain in ones own
home often represents stability during a period of economic and
health-related uncertainty. It means neighborly support and
independence, and often maximizes an individuals ability to receive
home-based support in lieu of extensive inpatient medical care.
The AIDS Housing Opportunities Act calls for two major
initiatives in the area of homeless prevention. First, it would
provide public and nonprofit organizations with grant funds which
could be used to help people with AIDS pay their rent, mortgage and
or utility expenses and thereby avoid eviction or foreclosure.
Second, it would allow funds to be used for establishing and
operating model short-term housing projects.
This initiative would help us to overcome many obstacles.
Presently, there are no federal programs which provide for
emergency rental assistance. In the context of AIDS, this means
that individuals who experience unexpected or costly medical bills
are often evicted from their apartments due to a temporary
inability to meet their monthly rental costs. The costs to society
of such displacement are extensive as individuals with AIDS often
end up in acute care settings as the result of displacement.
Emergency assistance, providing emergency financial relief on a one
time per year basis, for example, could help people with AIDS
PAGENO="0203"
199
remain in their present apartments while sparing the state and
federal government expenditures.
There are currently no federal programs which provide
individuals with rental start-up funds, including money for first
and last month rent and security deposits. Housing search workers
for people with AIDS throughout the country have experienced
difficulty placing individuals in subsidized and low-cost
apartments due to the fact that clients are often unable to meet
the initial financial requirements of moving into an apartment.
This is the case even where the client is able to meet the monthly
rental costs as many individuals with AIDS live on fixed incomes.
On a limited scale, AIDS ACTION instituted a pilot financial
benefits program whereby individuals are loaned the funds necessary
for placement in a permanent housing setting. Such funds are
returned to the Committee upon the death of the client or upon the
client's moving out of the apartment; such a program could serve as
a model for the development of a nationwide emergency assistance
program.
There are few fedex~al resources presently available for the
development of emergency and/or transitional housing. Statutory
language for all section 8 programs, for example, including
certificate and project based programs require that a leasehold
agreement exist between the primary tenant and the landlord/owner
of the building. This precludes the use of this very important
resource for the development of emergency/transitional housing.
Such housing is particularly important given that an estimated 20%
of all individuals with AIDS in acute care hospitals are there due
to a lack of housing alternative rather than medical need.
4. AIDS HOUSING INFORMATION AND COORDINATING SERVICES
-- Massachusetts a Case Study --
The Act calls for five million dollars in funds for the
development of housing information and coordination services.
These services would include direct counseling and referrals to
persons living with AIDS and the coordination of efforts in local
communities to increase housing resources appropriate to persons
living with AIDS.
Our experience in Boston has shown us that providing these
services are essential. At AIDS ACTION, through a federal grant
provided by the Health Resource Service Administration (HRSA),
housing resource development has been a primary area of
concentration. The Housing Resource Developer has worked on a
number of issues which if addressed on a national level would
contribute significantly to the ability of advocates to help people
with AIDS access housing.
First, educating housing professionals, as well as the
community at large on AIDS and housing issues is crucial. If we
are to meet the diverse and growing housing needs of individuals
with AIDS we must not only encourage new housing development but
PAGENO="0204"
200
also work on improving access to already existing resources.
Section 8 rental subsidy certificates, for example, are useless if
one cannot find landlords' willing to accept them. Housing
development money is not helpful if you cannot work with
communities to overcome the attitude of "NIMBY" -- Not In My Back
Yard. While new AIDS specific housing development is imperative
wç»= must also depend on educating those who presently provide
affordable and specialized housing if we are to successfully meet
the diverse and growing housing needs of people with AIDS.
In Massachusetts, the Housing Resource Developer has helped
to organize a statewide conference on AIDS & Housing. Hundreds of
housing professionals as well as members of community based
organizations attended. As a result, they have begun to address
the issue of housing people with AIDS. A local community
development corporation has agreed to set aside four units in a new
housing development for people with AIDS. Several private non-
profit housing development corporations contact AIDS ACTION's
housing advocate whenever a vacancy occurs. AIDS Housing Task
forces have been formed on both state and local levels.
The Boston AIDS Consortium sponsors an AIDS Housing Group with
members form city government and city AIDS services providers. The
Governor's office coordinates the state's Intersecretariat AIDS &
Housing Task Force, which also includes community participation.
This task force is presently in the process of developing
coordinated housing development and AIDS services funding
proposals. The state's Executive Office of Communities *and
Development has also formed an AIDS & Housing Task Force. This
group has been instrumental in working to help rewrite the state's
tenant selection procedures for access to subsidized housing and
rental subsidy certificates. These procedures, for the first time,
recognize the importance of homeless prevention in the context of
AIDS and grant a priority to individuals with serious medical
conditions where relocation would prove a risk to the applicant's
health or safety. (See attachment "C") Such a tenant selection
preference if adopted on the federal housing level could prove to
be a significant factor in slowing the growth of homelessness and
avoiding acute hospital care for people with AIDS.
The Executive Office of Communities and Development task
force has also developed a demonstration project to create new
housing opportunities for persons with AIDS using sixty five set
aside project-based assistance certificates. (See attachment "D")
This is another project that could be replicated on a nationwide
level and could result in the development of a continuum of housing
options through a cost effective mechanism. If each public housing
authority, when renewing their contracts for project-based
assistance, agreed to set aside a minimum of two certificates for
housing people with AIDS we would have thousands of units
throughout the country. Congress and/or HUD would first have to
address the following: given the emergency nature of many
individuals with AIDS housing needs can one use project-based
assistance to develop transitional housing options for people with
PAGENO="0205"
201
AIDS; can one not only target specific populations but also develop
selection procedures which do not reflect chronological order given
the diverse criteria that must be used when determining the
appropriateness of a given candidate for congregate supervised
housing; and, can one use project-based assistance to develop
supervised housing on medical institution's grounds. The answers
to these questions will clearly shape the effectiveness of the use
of project-based assistance for the development of housing options
for people with AIDS.
A non-profit AIDS housing development corporation, with
members from both traditional housing development corporations and
AIDS service organizations, is in the process of organizing. This
non-profit corporation is of the utmost importance. As highlighted
in reports on the Robert Wood Johnson Foundation's mental health
demonstration projects, creating housing development corporations
whose sole mission is to develop housing for a target population
maximizes effectiveness. Also, a áonsortium of groups is working
together on the development of a uniform subsidized housing
application for use in both public housing and privately run
subsidized housing developments. This would enable AIDS ACTION's
housing advocate, who within any given month assists approximately
70 clients who are either homeless or in immediate danger of
homelessness, to submit one completed application to all potential
housing sources.
Finally, this section of the Act would enable organizations
such as AIDS ACTION to hire more than one housing advocate to
assist the. ever increasing caseload of clients' seeking housing
assistance. As our housing case load approaches the thousands,
rather than the hundreds, additional AIDS housing search workers
will become essential.
RECOMMENDATIONS
AIDS ACTION strongly supports the inclusion of the provisions of
the AIDS Housing Opportunities Act in the Housing and Community
Development Act of 1989 (H.R. 1180).
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202
a arid Urban Deveiopmenl
1 ATTACHMENT `A' BOston Regional Office. Region
`.... ,/ Thomas P. ONeill Jr. Federal Building
10 Causeway Street
Boston, MA 02222-1092
August 7, 1989
Ellen Feingold -
Jewish Community Housing for
the Elderly III, Inc.
30 Waliingford Rd.
Brighton, MA 02135
Dear Ms. Feingold:
Subject: Rejection of Section 202 Non-Elderly Application
for Fund Reservation, Boston, MA, 18 units
Project No. 023-HHO1O
The subject application has been reviewed by this office and
found unacceptable for further processing because the proposed
occupants of the project, persons withAIDS, are ineligible. The
Section 202 statutory definition of "handicapped" contained in
Section 202 (d)(4) reads in part, "an impairment which is expected
to be of long-continued and indefinite duration." The definition
does not envision facilities for persons with acute needs for
medical intervention or for those with degenerative diseases.
Further, persons with AIDS predictably require or in the foreseeable
future will require specinlized care that is inconsistent with a
normal1ze~ housing project which is acceptable for funding under
Section 2C2. Therefore the application must be rejected because of
ineligibi:ity.
This a?plication did not receive a complete review, therefore,
it may have other deficiencies. My staff will be happy to discuss
the strengths and weaknesses of your proposal w.ith you early in
Fiscal Year 1990 after October 1, 1989.
Thank you for your interest in the Section 202 Program.
Very sincerely yours,
eputy Regional Administrator
cc:
Robert Engler
Stockard and Engler, Inc.
10 Concord Ave.
Cambridge, MA 02138
8
PAGENO="0207"
203
I1~R 15 `90 15:15 EC~D
ATTACHMENT~~~ IL$D.pmentalHousing
f *~ i ~kbasDasalo~eneM
Boston Regional omce, Reg*on
`~.l., Thomas P. O'Neill Jr~ Fedwal BuSding
10 Causeway Street
BosW~ MA 02222.1092
April 19, 1989
)~. )5szy-~ Mates ~borison
Ccoxdizetor
?ec~ral ~xt.ai. Aasistar~e Pz~as~
E~~utive Office of ~nities
a~ r~ve1~
100 Cethrit~ Street
~ 02202
~r Na. 1b~isc~u
This is in res~xxee to y~.tr reqt~st Iorar.czoval to set aside
20 S~ticri 8 ~cLstLeg CertificatestVax~hers for ~asrsons sufferirq
fran ~quirei Inuin~ ~ficier~y Syndrar~ (AIrS).
It is a.~ c~,inion that since present regulations give pris~y
to the three Yederal. preferer~s, the Autherity has the c~tian to
utilize the 10 perc~it bit rule ~ith1 aL1~ i~t-prefezesce
Certificate &~ \~cher helders prnc&krrce over f~n11ies with
r~ral preferences for this prcp~al. ~ ra~er of units to be
set aside ath qualifying criteria zest be defincd in yarn Ssetion
8 ar~ Vcsxher kbtinistrative Plan if this prcpxal is to be
a~ted ky the ~utherity.
~te ~~it to ~ir ~inistrative Plan concerning the
I~ra1 prefererx~ zest be zesubnitt.~ reflncting the Federal.
preferesoes as prissey in ~cordsrce with the regulations ar~
defining k~ the Authority will utilize the 10 percent excepticzk.
If yan have arty qtEsticns, please contact Feter B. Carr of
this Office at (617) 565-5215.
Very eir~ely yatre,
Dirator, Maria~s~tt Division
Office of Public I~islng
PAGENO="0208"
204
ATTACHMENT `C"
The Commonwealth of Massachusetts' revised Chapter 707
Rental Assistance Tenant Selection Procedures give
priority one status only to those that are hbmeless
and displaced by public action, such as urban renewal
or code enforcement activities. The following homeless
prevention criteria exists within priority two:
(c) At risk of displacement due to severe medical condition. An
applicant will be considered ~at ziak -of .diaplacemea.~ If:
1. The LilA determines based on cotn~.etent medical do~unent-
atlon that the applicant in suffering a severe medical
emer&ency that poses a threat to life or safety and to
whic~ the lack of suitable bouciog is a substantial
impediment to treatment or recovery; ~
2. The L.RA determines based on competent nedical docwnent..
otion that the applicant is suffering from an estreme~or-
serious illness where there is lint ted likelihood of
future improvement; and where relocation would prove a
rick to the applicant's health and safety. The
applicant must have established a primary tenancy for a
period of nine (9) continuous months prior to the date
of application and the shelter costs for ouch tenancy
shall have exceeded 507, of gross income.
DOCIIMENTAT ION REQUIRED
(FOR #1.)
Letter from doctor documenting tha::
(1) a severe medical condition of the applicant or member
of applicant's household, and
(2) haiing the affected household member remain in
c~rrcnt housing will substantally impede his/her
t:eatment or recovery.
(FOR #2.)
Letter from doctor documentine a severe medical condition
where there is a limited liketihood of future Improvement
and a statement to attest to the fact that relocat ton of
the ap:1.Icant or member of the appiicant's household will
pose a risk to his/her health and safety, and
Proof of tenancy(Ies) in unit(s) 13r 9 continuous months
as evidenced by rent receipts, copy of lease or lease
agreecent, cancelled checks, or utility bills, and
Verification of current household inco'~e.
1')
PAGENO="0209"
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ATTACHMENT `D"
JUne 8, 1989
Demonstration to Create New Housing Opportunities for
Persons with AIDS
Using Section 8 Project..Based Assistance
Objectives
1. Provide a financial incentive for private hQusing for
persons with AIDS and AIDS..related complex. To the
greatest extent possible, provide rental assistance in
housing dedicated to AIDS and ARC persons and which
provides the necessary life care, health care, and
support services. (The assisted population must be
Section 8 eligible.)
2. Where possible provide assistance to homeless persons
with AIDS -- persons in shelters, in in..pationt health
care settings, or other temporary residences.
3. Dete~ine whether Section 8 rental assistance is a
sufficient incentive to create housing opportunities
for persons with AIDS. Ideally, the availability of
rental assistance will encourage housing production and
rehabilitation.
4. The demonstration can be a good test of EOCD's
policy on preferences for persons with AIDS.
Gor~eral Design
1. Some geographical distribetion of project.~based
certificates should be achieved.
2. A high concentration of one.~bod.room certificates can
be used. (Silty five certificates will be allotted -
to the demonstration.)
3. The demonstration should steer away from development
projects that have alreay been approved for EOCD
financial assistance.
4. The demonstration could focus on specific, perhaps
hard-to..house population groups with AIDS ~-`~euch
as intravenous drug users.
5. Assisted property -owners will contract br Live to
fifteen years of Section 8 participation.
ii
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206
AIDS Deno
Junà 8, 1989
Page 2
Administration
1. The certificates will be administered by the regional
non.-prof its under contract with EOCD.
2. The interest of the regional non-profits will be
determined before selection of geographic locations.
3. Non-profit training, site selection, and household
selection can be assisted by local and statewide
groups involved in the provision of cervices to AIDS
and ARC persons.
4. An AIDS service organization could be brought in early
in the planning process to provide technical advice
and to identify prospective prp~ect sponsors.
S. The demonstration should have an education component for
the regional non-profit administrators and other
actors that do not have a track record in developing
housing for persons with AIDS.
t
PAGENO="0211"
207
Seattle I-lousing Authority 120 SIXTH AVENUE NORTH SEATTLE. WASHINGTON 98109-5003
Testimony of
HARRY THOMAS
Executive Director
Seattle Housing Authority
Seattle, Washington
and
Member, Executive Committee
Council of Large Public Housing Authorities
(CLPHA)
before the
SUBCOMMITTEE ON HOUSING AND COMMUNITY DEVELOPMENT
HOUSE BANKING COMMITTEE
Washington, D.C.
March 21, 1990
NANCY FREEMAN. ~ RAMONA WILLEY, THOMAS P BLEAKNEY. HARRIS HOFFMAN HARRY THOMAS. IHXV~R
PAGENO="0212"
208
Good Horning. My name is Harry Thomas, the Executive Director of the
Seattle Housing Authority, and a member of the Executive Committee of
the Council of Large Public Housing Authorities (CLPHA).
I am pleased to be invited here today to share the Seattle Housing
Authority's experience in providing affordable housing opportunities
for persons living with AIDS and to offer testimony in support of HR
3423, the comprehensive AIDS housing bill sponsored by Representative
McDermott, Representative Pelosi and Representative Scheener.
Today I would like to talk with you about the challenges we have
faced in housing persons living with AIDS; describe what has worked
for us and explain why -- based on our experience -- we support
Congressman McDermott's bill.
To start with, I should explain that we see several different kinds
of applicants who come to us with AIDS. Some of the persons living
with AIDS who apply for housing have always been unemployed and low
income. These may be persons who have contacted the AIDS virus
through using shared needles. This group is more familiar with the
system and comes in to apply for housing as soon as they learn they
have AIDS.
The other group is made up of middle-class people who have always
managed on their own. They continue to manage after they become
infected with the AIDS virus, and do not come to see us until their
condition has so deteriorated that they have lost their jobs and
their homes, and they need help immediately. This group is generally
unable to wait for a public housing unit.
Host of the first group we are able to place in public housing
because they come to us early enough in the progression of the
disease that they have the time to outlast the waiting list.
The second group needs help much faster, and it is this group that
cannot be helped in conventional public housing units.
We first started housing persons living with AIDS in 1986. At that
time, we faced two obstacles:
First, HUD was reluctant to acknowledge that persons living with AIDS
are disabled under the federal definition for public housing and
Section 8 programs. That definition is: "Unable to engage in any
substantial gainful activity by reason of medically determinable
physical or mental impairment which can be expected to result in
death."
In the end, we made our own interpretation of the regulation, and
began to admit persons living with AIDS into public housing about one
year before we received HUD approval.
The second obstacle we faced was the reluctance of our own staff to
work with this population. This reluctance was rooted in ignorance
and misunderstanding. To address it, we have had a total of four
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Harry Thomas Testimony
Page Two
training sessions -- about one a year -- which all employees are
required to attend. These training sessions have been provided by
the Seattle-King County Department of Public Health and provide
excellent up-to-date information about the disease and how it is
transmitted.
We have seen this training pay off in an increased acceptance and
compassion for persons living with AIDS -- both as residents and as
employees of the Housing Authority.
Our policy is aimed at avoiding discrimination against persons living
with AIDS. We do not tell the staff which residents have AIDS.
Consequently, they are not treated differently because of their
condition.
We expected, by the way, that the reaction of other residents to
persons living with AIDS would be a major obstacle. It has not. In
general, the people living in public housing have been very
accepting.
The Seattle Housing Authority provides housing for persons living
with AIDS in a variety of ways:
* Persons living with AIDS are among the tenants in all our
public housing communities, including high-rises, large family
communities and scattered-site units, as well as in our
locally-funded Seattle Senior Housing Program.
* Through our Section 8 Program, we have "set aside" 20
certificates for persons with terminal illness. Most of these
certificates are used by persons living with AIDS.
* We rent units to the Northwest Aids Foundation to use for
transitional housing for persons living with AIDS.
As I stated earlier, our opinion is that persons living with AIDS
meet the definition of "disabled" and are eligible for public
housing. However, unless they come to us early in the progression of
the disease, we cannot help them in the public housing program.
In our experience, using Section 8 certificates is a most useful tool
for assisting those applicants with AIDS.
The idea of a "set-aside" of Section 8 certificates came to us from
the Northwest AIDS Foundation which requested a set-aside for persons
living with AIDS. MUD was reluctant to approve this request, and
suggested that instead we set units aside for terminally ill
persons. What this meant was that people who have AIDS, and others
with terminal illnesses, could be helped immediately -- as long as we
had set-aside certificates left. These filled up immediately, and
primarily with AIDS patients.
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Harry Thomas Testimony
Page Three
HUD will no longer allow us to set aside Section 8 certificates for
terminally ill persons. This is unfortunate. Section 8 certificates
are beneficial to persons living with AIDS because often it means
that they can either stay in the apartment they already live in, or
move to an apartment near others with AIDS so that support services
can be more efficiently coordinated.
Congressman McDermott's bill would provide funding to local housing
authorities to provide Section 8 certificates for persons living with
AIDS. From our experience in Seattle, this would better enable
housing authorities to be of assistance to this population.
In the meantime, the Seattle Housing Authority is examining the
regulations governing what we call "federal preferences" to see if
they will enable us to continue to be responsive to the housing needs
of persons living with AIDS and other fatal conditions.
As you know, Congress developed "preferences" for prioritizing
applicants for public housing. The preferences are for persons who
are homeless, who are living in substandard housing, and who are
paying more than 50% of their income in rent.
In the Section 8 program, we have been treating these three
preferences equally. However, the federal preference regulations
also allow housing authorities to impose local preferences. We are
developing, and will propose to our Board of Commissioners in the
next several months, a preference system for Section 8 that will give
priority to persons who meet the federal preferences and who have
trouble accessing public housing.
There is also a need for transitional housing for persons living with
AIDS; in general, these are persons who are coming out of the
hospital or who have lost their permanent housing and need a place to
stay until new permanent housing can be found. Although under
federal regulations we cannot provide transitional housing in public
housing, SHA owns two locally-funded buildings in downtown Seattle.
In one of these, we rent 13 units to Northwest Aids Foundation and
they, in turn, place the tenants in them. This program is supported
with funding from the City of Seattle.
We recognize that not all cities or counties have the same level of
support that we receive in Seattle from local government.
Consequently, the provisions in HR 3423 which would make grant funds
available to public or private organizations to help prevent
homelessness among persons living with AIDS by helping to pay rent
and other payments is essential in an over-all AIDS housing strategy.
Learning to house this new population has been a learning experience
for all of us. It has been governed by a belief that persons living
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211
Harry Thomas Testimony
Page Four
with AIDS are eligible for public housing and Section 8; that these
persons should not be discriminated against, and that the disease
offers no threat through casual contact to staff or other residents.
We have benefitted a great deal by our cooperation with the Northwest
AIDS Foundation and the Seattle-King County Department of Public
Health, and by the generally tolerant and compassionate attitudes
expressed by virtually every local government and agency with which
we work.
The Northwest AIDS Foundation has shared freely of its expertise as
to how we could best provide housing for persons with AIDS; in
addition, the support services the Foundation offers enables persons
living with AIDS to live in public housing or private apartments.
Again, not every metropolitan area will have an agency that provides
the high quality and standard of service that the Northwest AIDS
Foundation does. Congressman McDermott's bill will encourage public
or non-profit organizations to apply for grants to carry out the
information, counseling, referral, advocacy, and coordination that
the Foundation provides for us in Seattle.
Mixed Populations
One reason why the assimilation of persons living with AIDS has gone
so smoothly for us is that we have had the cooperation and active
involvement of human service providers. The Northwest AIDS
Foundation, in particular, has been an excellent advocate for their
clients and has been on call to assist our managers when problems
have arisen.
However, persons living with AIDS are just one of many populations
with special needs that are eligible to live in public housing.
Persons who are disabled because of drug and alcohol abuse, or
chronic mental illness, or physical disability, are also eligible to
live in public housing's affordable units.
Often, these disabled persons need one-bedroom apartments and so are
placed in high-rise buildings that have traditionally housed the
low-income elderly. The Seattle Housing Authority, like most housing
authorities across the country, has seen a dramatic increase in the
number of these younger disabled persons applying for and moving into
high-rise buildings. -
In 1982, 17% of SHA's high-rise population were younger disabled or
handicapped people; in 1989, almost 43% of our high-rise residents
were younger people with disabilities and special needs.
And, just as persons living with AIDS need support services to ensure
a successful tenancy, so do these other populations. And, in most
cases, the services are extremely limited or nonexistent.
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Harry Thomas Testimony
Page Five
Recently, SHA put together a committee of tenants, service providers
and staff to look at the problems, and possible solutions, associated
with this mix of populations in the high-rise buildings. The report,
which was published in October 1989, was designed to address the
dissatisfactions that arise in a building when an aging, frail
elderly population is mixed with younger persons who have come off
the streets~, are deinstitutionalized mental patients or who qualify
for public housing by virtue of past alcohol or drug addiction.
The problem is that our elderly tenants, especially, are afraid. The
quality of. their life in the buildings has been severely impacted.
They believe they are physically unable to protect themselves from
people who are stronger, younger, larger and more aggressive. They
no longer feel safe in their own homes. Fear is nurtured through
gossip and ignorance.
People of all ages, especially those who are frail, have been
victimized by other tenants or tenants' guests. Occasionally there
~have been assaults, but usually the problem has been theft, begging
for money, or some form of intimidation. In addition, the behavior
demonstrated by some tenants with mental illness gives credence and
reinforcement to the fear that some people experience when near
people with mental illness.
When you couple this with the fact that the elderly persons in the
buildings are increasingly frail, the mixture becomes more
explosive. Many of our increasingly frail elderly need assistance to
live independently. This means they need help with meal preparation,
housekeeping, shopping, transportation, personal care, bill paying,
and so on. Without this assistance, they are at risk of losing their
home with SHA and being moved to a facility with a higher level of
supervision and care. Most of them fear being forced from their
home, and many may ignore the advancing signs of their growing
dependence because of that fear.
The Mixed Population Committee came up with several recommendations
to SHA, which I would like to briefly share with you.
1. The Committee recommended that residents of the buildings
receive regular information about SHA policies and procedures
regarding who is eligible to live in the buildings; how SHA screens
applicants; the due process that must be followed in an eviction;
tenant responsibilities, and the process for making complaints about
other tenants.
SHA has made presentations in all the high-rise buildings that cover
this information. Called "We All Live Together," this presentation
was well-received and helped to address some of the issues of mixed
populations. The Committee wants these presentations to continue to
be made in the buildings on a regular basis. We plan to do this in
1990.
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213
Harry Thomas Testimony
Page Six
2. The Committee recommended that human service staff with a
counseling or group work background be assigned to these buildings to
assist tenant groups to plan activities that are stimulating,
entertaining and provide an opportunity to socialize. This staff
would also help those residents who have become isolated, and would
take the lead in conflict resolution among tenants. This would mean
either an addition to SHA staff or locating agency assistance.
Although this is a priority for SHA, I have a very real concern that
within the budget constraints for 1990 and 1991, we will be unable to
fund new positions, no matter how desperately they are needed.
3. The Committee recommended that services be developed and
focused in certain buildings so that there is intensive support to
special populations. Although no one would be excluded from any
building, the committee believed that those with certain needs could
choose to live in a building where they have support.
Although we understand that HUD has disapproved of a similar approach
elsewhere (Minneapolis Housing Authority), we are proceeding with
seeking the services. We recently entered into a contract with a
local agency to provide limited intervention and case management
services to elderly or disabled residents in our high-rise
buildings. The program also provides consultation services to SHA
managers when residents present problems of alcohol or chemical
dependency, mental illness or problems associated with aging.
The question for the Seattle Housing Authority, and other housing
authorities across the country is, of course, who is going to provide
these services? We all know what needs to be done -- housing
authorities and human service providers must have the resources to
provide support to these special-needs populations. The agencies in
the service delivery system are receiving less funding now and are
often programmed up to their limit. Housing authorities overwhelm
them with the large numbers of tenants who need their help. Often
they cannot respond positively to our requests, or in a very limited
way.
4. The Committee also recommended SHA explore ways to house more
people who use live-in personal care providers. This could be done
through providing more two-bedroom apartments, or allowing personal
care providers to live in one-bedroom apartments and perhaps work
with several residents in close proximity. In this regard, the
committee recommended that the policy regarding nondisabled,
nonrelated, noneligible "roommates" needs to be reviewed.
5. The Committeed recommended that SHA extend the hours in which
there is an SHA presence in the building. We are looking at the use
of graduate students as back-ups to our regular staff.
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214
Harry Thomas Testimony
Page Seven
6. Finally, the Committee recommended that formal working
agreements with social service agencies should be established which
define the rolesand responsibilities with mutual clients. This
formal working-agreement would .provide "easy access" contact between
SHA ~and the agency as well as follow-up by the agency with the
tenant. Such agreements need to be made with the entire mental
health system, and with alcohol and drug treatment agencies, among
others.
If thesesupport networks~are not available, housingauthorities will
be ultimately forced to refuse housing to tenants with certain
needs. We simply can't take people who cannot live independently or
who -cannot be gnaranteed supportby the social service network.
SHAis not the only housing authority to study the problem and take
steps to address it; however, we need the cooperation and financial
support of the Federal government if we are to be able to make a
difference.
The Council of Large Public Housing Authorities (CLPHA) has also
studied the problem of mixed populations in the high-rise buildings
and has developed a series of suggestions about how the conflict
could be resolved. I would like to share those with you now:
* A ceiling on the number or percent of mentally infirm residents
below the age of 62 who could be admitted to an "elderly" building;
* Special ClAP funding to modify units in family developments for
the disabled and handicapped, thus broadening their housing choices;
* A five percent development funding set-aside to fund group
homes and transitional living arrangements for individuals needing
such arrangements;
* Special funding, perhaps through a version of the rental rehab
program, for modifications to privately-owned units subsidized
through the Section 8 program (most housing authorities have found
very few privately-owned units to be accessible or adaptable);
* A three percent set-aside of Section 8 certificates or vouchers
expressly for disabled and handicapped applicants.
This problem of mixing populations in the high-rise buildings is a
serious and significant one for the Seattle Housing Authority and for
most housing authorities nationwide, and SHA supports the suggestions
recommended by CLPHA. On behalf of the Council of Large Public
Housing Authorities, where I serve on the Executive Committee, I
extend our eager willingness to work with you to address this
problem.
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215
Harry Thomas Testimony
Page Eight
This sums UP my remarks. Thank you again for giving me the
opportunity to share our experience and concerns with you today.
###
PAGENO="0220"
216
TESTIMONY
OF
PAM ANDERSON, PROGRAM MANAGER
RESIDENTIAL SERVICES, AIDS PROJECT LOS ANGELES
GIVEN GEFORE THE
SUBCOMMITTEE ON HOUSING AND COMMUNITY DEVELOPMENT
OF THE
COMMITTEE ON BANKING, FINANCE, AND URBAN AFFAIRS
MARCH 21, 1990
PAGENO="0221"
217
* I would like to express my gratitude for this opportunity to
addrass the subcommittee on the housing needs of people who are
living with AIDS. I consider this not only an honor but a
tremendous responsibility. It is my charge to "humanize the
statistics and impart to YOU the same sense of urgency I feel.
In the amount of time it takes for me to deliver my testimony
here to you this morning thirteen people will die, 70 7. have an
income that will not support adequate housing. These individuals
will have spent the last two years of their life struggling with
not only the emotional and.physical debilitation brought on by
the disease but also with obtaining housing, -food, medical care
and treatment as well as public benefits. By -the time I return
-to Los Angeles 186 people will have died. There is no time to
waste. We know one of the most critical needs for people with
AIDS is affordable, humane housing options.
The Federal governments response to this critical need has been
to deny access to funding. I have first-hand knowledge that this
is true. AIDS Project Los Angeles has a 14-bed long-term
facility for individuals who are not only symptomatically
infected with the.HIV virus but also have a secondary diagnosis
of mental illness and in most cases a third diagnosis of
substance abuse.. In August of 1988 we applied to the State of
California for a $60,000 grant to make the -facility
handicap-accessible. Thirty thousand dollars was to come from
state funds and the other thirty thousand was to come from HUD
monies designated as McKinney Acts Permanent Housing for the
Handicapped Homeless. The State of California approved Our
proposal and forwarded it to HUD. On November 22, 1988, we
received notification that our request for $30,000 had been
rejected. The rejection stated that we had an ineligible
popLilation. The clients would be `AIDS patients." The decision
was contrary to several federal laws, the Rehabilitation Act of
1973, the Civil Rights Restoration Act of 1988 and the Fair
Housing Act of 1988. It is also important to note that the
application specified no less than nine times that the population
to be served would be dually-diagnosed as having mental
disabilities in addition to AIDS. People with mental
disabilities have been determined to be eligible populations in
each of the nine other applications submitted at the same time
APLA submitted its application. Since November of 1988 letters
have flown back and forth, appeals have been made and 807. of the
people that were in the facility at that time have died. The
last transmittal we received from HUD was on January of 1989.
HUD has been totally unresponsive. In this process we have been
told many interesting things by staffers at HUD, the most telling
was the fact that had our clients had a mental or physical
handicap prior to the AIDS diagnosis our application would
probably have been OK'd. All this has been over $30,000 to make
a facility handicap-accessible for handicapped people. The other
access to HUD funding in Los Angeles is the rent assistance
program but the waiting time precludes our clients'
participation. The list is from two 2-3 years in duration..
PAGENO="0222"
218
I would like to address what we in Los Angeles County see as the
appropriate responses to this critical need. Parts of the
information I will be presenting are taken from the Los Angeles-
County three-year HIV Strategic Plan, other information is taken
from the results of local planning meetings conducted by the City
AIDS Coordinator.
The types of Residential Programs in detail:
Emergency/Transitional Shelter
Chronic Vs. Situational Homelesspess
Some FWAs become homeless as a result of their AIDS diagnosis
(situational homelessness).
This may occur when a person with AIDS is evicted by family, by a
roommate or lover, and has no resources to quickly establish an
independent living situation. It may also happen when a person
with AIDS becomes disabled and is unable to marshal the financial
resources and/or support systems to maintain a living situation
while waiting for public benefits to become available.
However, for the vast majority of homeless persons with AIDS
(based on the observations of AIDS service providers in Los
Angeles and elsewhere), homelessness was an issue prior to AIDS
becoming a problem in their lives. These are people who have
been chronically homeless, and now have AIDS as well.
A substantial number of such persons are dealing with substance
abuse issues and/or psychiatric problems which may or may not be
related to HIV disease. In addition, this population tends to be
relatively young. The study done on the homeless in the City of
Los Angeles shows a seropositive rate of from 107. to 207.. It is
noted that crack users, not I.V. drug users, account for the
majority of these figures.
Shelter Programs and Persons With AIDS
Emergency and transitional shelter programs are designed to get
homeless people off the streets and, ultimately, into a permanent
living situation. Emergency shelter is often defined as a
short-term program where there is not a great deal of on-site
service directed at further placement; transitional shelter as a
program of longer duration with more on-site programming. The
terms refer to two basic types of need: the need to acutely get
someone off the street and stabilized (emergency shelter needs),
and the need for programs that provide a longer, more specialized
transition into a permanent situation (transitional shelter
needs).
PAGENO="0223"
219
Inherent in this definition is the assumption that the emergency
shelter clients primary need is for housing (and therefore they
can transfer fairly promptly to a permanent situation once it is
available), while the transitional shelter client has additional
issues that need to be addressed before a permanent situation can
be found (e.g. mental health issues, sub~tance abuse, discharge
from a correctional facility, discharge from the hospital with
follow-up medical needs).
Persons with AIDS needing these types of services may come into
the system from a number of different entry points. Examples
include walk-ins to AIDS service agencies, walk-ins or referrals
to homeless programs, referral from hospital discharge planners,
DFSS~ and/or correctional facilities. It is important to
remember that they may therefore enter either via the AIDS wystem
or the homeless system.
Use of Existing Shelters
There are *a number of homeless shelters already providing
emergency and transitional services to people on the streets.
Although they are virtually all chronically filled to capacity,
many of these shelters could help house PWAs if they had
adequate training on the issues involved (health care issues,
appropriate infection control, and addressing the other
residents fear of PWA's). Such training is made even more
important by the reality that FWAs are already presenting in,
these shelters, afraid to disclose their illness.
Certainly many existing emergency shelters could be appropriate
for PWA's For PWAs who have additional issues (such as
substance abuse), existing transitional shelter programs. that
specialize in these issues could be very appropriate for this
population.
Cross-training and cross-linkage must overcome some important
barriers in order to be effective. Many PWA'~ resist placement
in homeless shelters out of quite justified fears of. the other
residents reactions. The shelters themselves must have adequate
training in the special needs of PWAs. And most vitally, PWAs
must remain connected to the AIDS care system via case
management, and not become lost. This requires an effective
onqoir~~~ working relationship between the homeless and AIDS
systems, not merely an exchange of referral lists.
It is important to note that in the case of dormitory-type
shelters in Los Angeles there have been serious concerns r.aised
about PWA safety given the prevalence of TB. Given the PWAs
susceptibility to TB, other housing options are advised.
PAGENO="0224"
220
-4---
Improvement of PWA access to the homeless system, and homeless
system linkage to AIDS services and case management, is essential
to the success of both systems in the contert of the AIDt
epidemic.
The other two options involve the development of transitional
facilities specifically designed -for persons with AIDS, within
the AIDS system:
AIDS-specific Transitional Shelter
Early in the AIDS crisis, it was assumed that homelessness among
people with AIDS would be dealt with by developing specialized
shelters e>~pressly designed for people with AIDS, operated
partially or entirely by an AIDS agency (or group of agencies).
Many of the early attempts at this, here in Los Angeles and
elsewhere, had major problems because of some of the assumptions
that providers made -- particularly that they would be seeing a
relatively stable population made homeless by AIDS. In fact,
they found themselves dealing with issues of poverty, substance
abuse, and mental health common to the chronically homeless
population.
There is general consensus that the shelter needs of people
homeless because of AIDS (the situational homelesa) and those of
people with multiple issues (the chronic homeless) are guite
different. Many in the AIDS field believe that in both of these
categories, development of AIDS-specific programs can be of great
benefit.
Two categories of such programs are: an intensively case-managed
model for those clients who are chronically homeless with
multiple issues such as substance abuse and/or a psychiatric
diagnosis; and a less structured model for the situational
homeless.
Such shelters would have intensive, specialized, on-site case
management, which would begin once a client is stabilized. The
goals of such case management would include connection of the
client to benefits, development and implementation of a case
plan, recognition of medical and psychiatric issues, linkage to
other elements in the system(s), and eventual placement in a more
permanent living situation.
The facilities would ideally have on-site counseling (including
crisis counseling), other mental' health services, and the option
of home nursing visits as needed. Group activities and social
support would be emphasized. Addiction recovery services might
be available on-site.
PAGENO="0225"
221
There is some debate over whether it makes sense to discuss
transitional shelter for persons with complex multiple issues
like dementia or active substance abuse. Experience has
generally shown that such people may need longer-term care arid
case management, and thus might be placed directly into long-term
care facilities.
Certainly for people who are homeless and have the potential to
be stabilized into an independent living situation, an
AIDS-specific transitional shelter program with specialized case
management could be of great benefit, is especially vital where
access to traditional homeless programs is not there, either
because the homeless programs are unable to deal with
AIDS-related issues -- or in most parts of Los Angeles, because
the homeless programs are already overwhelmed.
There are often problems obtaining ongoing operational funding
for programs like these. Homeless money' is often not available
for programs specific to PHA's AIDS funding is often restricted
to facilities that have a license, and there is no licensing
category for facilities like these, though there is a State
waiver program called the "Residential AIDS Shelter" waiver (or
RAS) which is helping some facilities obtain funds.
Long-Term Residential Services
Many person with AIDS may need long-term residential support for
one ore more of the following reasons:
* Their financial resources have been completely depleted and
their income is $600 per month or less.
* Their physical condition has deteriorated to the point that
living on their own is hazardous.
* They may have additional issues, [substance abuse,
dementia, etc.], requiring a more structured long-term
living situation.
There are options proposed in Los Angeles County to meet
long-term housing needs. The first option is low income rental
units. This would appear the most cost effective humane remedy
to the financial crisis. PWA's find themselves facing. The plan
calls for acquisition and rehabilitation of apartment buildings
by AIDS service agencies able to provide supportiVe services to
the tenants. These services would include case management,
referrals to in-home nursing care and on-site support groups.
There would be access to referrals for legal, transportation, and
mental health services. The tenants would be charged 307. of
their income and rent subsidy funds would be developed f or those
who had no income.
27-986 0 - 90 - 8
PAGENO="0226"
222
A major concern raised with this approach is the capital outlay
needed to purchase and renovate such projects. Further concern
is about the on-going operational expenses because rent subsidy
money is not currently available. The positive aspect c-f the
support and socialization this approach would afford, makes it
one of the most -favorable options.
Long-Term Treatment For Those With Multiple Diagnosis
There is a substantial population of persons with f~IDS who have a
second diagnosis which is at least an equal factor in their
long-term residential needs:
-* c~n active substance abuse problem.
* Psychiatric diagnosis, which may or may not be related to
HIV disease. -
While it is some-times possible to place such people in
independent living situations through the methods described
above, in a great many cases specialized, long-term care is the
only effective option.
There is a critical shortage of residential drug treatment and
mental health programs across the board. AIDS clearly reinforces
and exacerbates the need for more programs of these types. Those
that do exist need to be made accessible to PWA's and require
training in the special needs of PWAs, just as was the case with
shelter programs.
Some programs have been developed which specialize in the
long-term care of multiple-diagnosed PWA's, and they have been
quite successful. The most successful programs of this type have
been those targeted directly and narrowly at this population.
In Los Angeles, AIDS Project Los Angeles has create Our House,
which has staff that is trained in-depth to handle mental health
and substance abuse issues working on-site.
For' such programs to be effective, staff must be highly trained
in the specialized area of substance abuse and psychiatric
problems, including HIV-r'elated dementia. Skilled case
management must be available on-site:
* AIDS is increasingly affecting the substance abusing
population.
* As people with AIDS live longer' and ar'e treated more
effectively for' physical complications, dementia is
affecting a larger' per'centage of them over' time.
PAGENO="0227"
223
-7--
The approach suggested for long-term housing of special needs
populations is to be follow the model uf community based
residential drug programs and mental health programs. The
difficulty with this approach is that there is no licensing
category. Without licensing, there is no provision -for
reimbursement. AIDS Project Los Angeles has just assiste.d in
developin.g a licensing category to meet this need. The next
hurdle to cross is continued operational funding.
Alternative End-Stage Care
It is worthwhile to pause a moment here to define a term that has
been used to mean many things in recent years -- hospice.
For purposes of this testimony, we will use what is really the
traditional and historical definition of hospice.:
The process and philosophy of providing palliative care, rather
than aggressive intervention, to a dying person, supporting him
or her through the dying process, and providing, as well as,
considerable support to family and significant others both during
and after the dying process.
Note that there is nothing in the definition about location.
Hospice is a process, not a place. It may occur in the home, or
it may occur in a facility resembling a home, or it may occur in
a medical facility.
It is also important to note that ~th AIDS, the distinction
between palliative and aggressive therapy is blurred. If a
person is at risk of going blind with CMV retinitis, is it
palliative to treat the condition? Many PWAs in hospice care
prefer to fight disease medically as long as possible, especially
since new options for treatment are being developed all the time.
Often it is not possible to provide hospice care in the persons
own home because the person does not have a home. Sometimes,
even when there is a home, and even when there are caregivers,
hospice care in the home is not practical. The medical situation
may be too complex to comfortably manage in the home. The
requirements -For in-home nursing care may be too costly. The
cargiver may simply be overwhelmed, emotionally and physically,
by the level of care required. And, of course, a support system
may not exist for the person. The two basic approaches which
have evolved for the delivery, of hospice care in a setting other
than the dying personS home are:
PAGENO="0228"
224
-8-
Neighborhood Hospice
Neighborhood Hospice invovles the placement of small,
home-like facilities, [generally six beds or fewer], in
local neighborhood for deliver of hospice care. The primary
caregivers are trained volunteers. These facilities are
more like a home than a medical facility, though a physician
is generally on call, and there are regular nursing visits
as well as on-call nursing around the clock.
The basic intent and philosophy of such facilities is to
create, for those. who cannot be managed in their own hose, a
hospice environment as close as possible to a home.
This is the basic type of facility that began to develops in
communities over the past several years in response to the
~lDS crisis, and the resultant need -for care alternatives.
As with any new, unregulated, and community-based option,
some have worked ~uire well; others have had serious guality
control problems which have largely been addressed *by
community and governmental pressure. Today, a number u-f
facilities like this are up and running guire successfully.
Congregate Living Health Facilities
The other model for delivery of hospice care outside the
persons own home is the establishment of larger facilities
with resident, roLind the clock nursing care. These
facilities are a more medical model, and are able to manage
a largef number of patients while still maintaining the
intimacy of a non-hospital setting and the ancillary support
services charactertistic of the hospice philosophy.
The concept of the Congregate Living Health Facility evolved
in 1988 to create a licensing category for this second type
of facility.
Both types are sene as viable for PWAs in Los Angeles.
The conclusion about projected need over the next 3 years from
the County plan are as follows: -
1. Los Angeles will need to develop 240 additional shelter
beds.
2. Los Angeles will need to develop funding for some level
of temporary or permanent rent subsidy for approximately
3,500 persons per year.
3. Los Angeles will need to develop 500 new units of
long-term, low cost housing. A -percentage of which
should be designed as clean and sober living
environments for individuals in recovery.
4. Los Angeles will need to develop 42 beds per year for
long-term care for those with multiple diagnosis.
5. Los Angeles will need a total of 150 hospice beds.
PAGENO="0229"
225
-9-
The bill H.R. 3423, the AIDS Housing Opportunities Act,
introduced in 1989 by Congressman McDermott is comprehensive in
addressing the needs I have identified in this testimony.
Further, it clarifies access to HUD's programs, stating that
person living with AIDS should be considered disabled or
handicapped. I would hope that every effort is being made to see
that this bill is approved.
In conclusion, at this point in time, PWA's in Los Angeles County
are living and dying in public hospital wards and or on the
streets because there are very few options. The alternative
residential facilities are full and have waiting lists such as
the Our House facility, [our current wait list is 23], run by
AIDS Project Los Angeles. We have the only facility for dual and
multiple diagnosed individuals in Los Angeles County and that
only represents 14 beds, the cost of a hospital bed in Los
Angeles County ranges from $7:: to $1,200 per day, the
alternatives listed in this testimony would range from $20 to
$2):), which is a significant savings in public dollars.
In the very beginning of my tenrue with APLA, I had an experience
that continues to fuel the urgency I feel. I was sitting in the
living room of Our House with a client named Joey. Joey had just
realized that the HIV virus was indeed going to take his life.
Joey had received his diagnosis only one short month after
successfully completing a drug treatment program. Joey look at
me and tears started streaming down his face. I put my arms
around him and his body shook with the pain of the realization
that he was going to die. His comment to me was, "I'm .so sorry
I'm not going to live lodg enough to make my brother proud of~
me. Its so unfair Pam, I don't want to die." I realized that
there was not a thing I could g~ to Joey to lessen his
suffering. There were only things I could do to make the journey
he was facing a little less frightening and a little more
comfortable and conducive to maintaining the dignity that he had
struggled so hard to achieve. That's my message to you today.
There is no more to be said there is lots more to be done.
Thank you.
PAGENO="0230"
AIDS Res~deniia1 System of Care
1~i~t~ torn 4~t1ospKaHzed
system
:
* flawher to go. ::flC5~CO~
Atcohotldtug pgonclo5 DPS3
~
1~TA~1
(AIDS CM
[~cy)
t3~J ~Ing released
Parole system
.
.
Hasp tdlscberga ptannor~1
I. I I I
SHELTER Single person, Family Medically
SYSTEM Single diagnosis Acute - - - - -~
I I
SHELTER 1 SHELTER 2 /`RES Tx SHELTER 3 INTERMEDIATE CARE
1~~G-TERM PLACEMENT OPTION~~ L
~ / H - - -
LONG-TER]~4 Independent Independent Group apartments Clean & sober Long-term care I
SYSTEM Living w/rent subsidy w/onsite services Group living For dual diagnosed
`I
HOSPICE - - - Congregate
SYSTEM . Living
Health
Facilities
PopuIatlon~j
Access Pohits~
Single person,
Multiple diagnosis
Pediatric
r i~~i
Pareriis/ Foster Group
Relatives Placement Home
cD
PAGENO="0231"
227
03/20/90 13:27 P.03
TESTIMONY OF
ROLAND B. WESTERLUND, HOUSING COORDINATOR
MINNESOTA AIDS PROJECT
MINNEAPOLIS, MINNESOTA
TO
THE uNITED STATES HOUSE OF REPRESENTATIVES SUBCON~.1ITTEE
ON HOUSING AND COMMUNITY DEVELOPMENT OF HOUSE COM?~1ITYEE ON
BANKING, FINANCE, AND URBAN AFFAIRS
March 21, 1990
RURAL HOUSING NEEDS FOR PEOPLE WITH AIDS
This testimony, which deals with housing for people with AIDS who
live in rural areas, will begin with some introductory
observations about AIDS. That will be followed by some comments
on the significance that housing has for people with AIDS. Next,
we will identify the four major types of housing systems upon
which HIV-infected persons rely during the course of their
illness. Then we will identify some rural issues associated with
housing HIV-infected people.
SOME OBSERVATIONS ON AIDS. People with AIDS are often portrayed
in the media as being at the very end of their lives. In
reality, a great amount of intensive and of ten traumatic living
occurs between the time that a person is infected with the MIV
virus and the tirre that a person's life ends. That time interval
is a matter of years rather than weeks or months. During this
interval the HIV-iflfected person must face the reality of a
shortened life and face the issues of how to live, where to live,
and how otherwise to relate to the surrounding world. The HIV-
infected person must decide who to tell about his or her illness
and how to tell it. He or she must face the possibility of
rejection and discriminatioS. This person must also face the
possibility of loss of job, loss of income, loss of friends and
loss of a place to live. All of that is likely to occur along
with a series of opportunistiC infections that grow in severity
until the end of life. Fortunately there is some hope that in
the future, with the appropriate medical intervention and with
healthful living, it may be possible for HIV-infected persons to
live with a chronic illness rather than to die with a
catastrophic one. Public housing policy must take into account
both the current state of the art in treating AIDS and the
future, when AIDS may be regarded as chronic illness to be
endured during err almost normal lifespan.
1
03/20/90 13:29 P.06
PAGENO="0232"
228
03'20'98 13:27 P.e4
HOUSING AND AIDS. It has been our experience at the Minnesota
AIDS Project and at other organizations providing supportive
services to people with AIDS that housing is a critical issue for
HIV-infected people. According to case managers at the Minnesota
AIDS Project, at least 85% of our clients will have some kind of
a housing crisis at least once during the course of their
illness. These crises may include: the inability to pay rent or
to pay the mortgage on one's home; discrimination in housing;
inadequate supportive services for in-home care; eviction from
one's home; or a shortage of the type of housing that is needed
at a given point in one's illness. Our experience also suggests
that HIV-infected persons move a number of times during the
course of their illness. For example, a person living in market
rate housing may move to a community hospital temporarily in
order to be treated for pneumonia, then move for a short period
of time to a nursing home, or to a board and care facility before
moving back to market rate housing. At a later stage this same
person may move to a residential treatment facility in order to
deal with a chemical dependency problem; then move into a half-
way house before moving into public or subsidized housing. Then
at a later stage of illness this same person might move from a
subsidized or public housing unit to a supportive living
residence and then perhaps to a nursing home or a hospital.
Unfortunately, all too often we find that AIDS Sensitive housing
facilities are not available when a person needs those
facilities.
FOUR MAJOR HOUSING SYSTEMS. In order to obtain a better focus on
the houslng issues facing HIV-infected persons, it is useful to
distinguish between four different types of housing systems that
are needed by HIV-infected people as they progress through their
illnesses. Each housing system differs from the other system in
the degree of independence available to residents of these
systems. Each system also differs from each of the others in
terms of organization, financing, and operation. These systems
are described below:
A. ~4~ndent Living Housij ystem. This system
includes traditional market rate housing, public
housing, subsidized housing (such as Section 8 units),
and single occupancy units without supportive services.
a. ~g~tive Living Hou~4~g and Service System. This
includes board and care facilities, board and lodging
facilities, supportive living residences, and
transitional housing. In such housing systems there is
some supervision and support designed to maintain or
promote skills or to prevent abuse/neglect of
vulnerable populations.
2
03'20'9@ 13:29 P.07
PAGENO="0233"
229
C. Residential Treatment Syq~p. In this system there is
in-house rehabilitation and support that focuses on the
acquisition of coping and independent living skills.
Examples of such facilities include mental retardation
facilities, mental illness facilities, facilities for
physically handicapped people and chemical dependency
treatment facilities. Typically, these are places
where HIV-infected persons might go temporarily to
learn coping and independent living skills.
o. institutional Housing Sy~g~g. In this system there is
intensive treatment, exclusively in-house, designed to
stabilize acute/severe illness or to provide a high
level of support and structure. Institutional housing
systems include state hospitals, community hospitals,
nursing homes, and correctional institutions.
Movement within and between these often complicated
housing systems can be confusing and burdensome to a
person who is HIV-irifected. For that reason it is
important to have housing information and referral
services available to people who have HIV-infections.
SOME RURAL MOUSING ISSUES. in addressing some of the housing
issues facing HIV- infected persons in rural areas, I have
organized the issues in relation to the four major types of
housing systems previously described.
A. Independent Living Rousing System Issues.
1. Quality of the housing stock in rural areas. Because
HIV-infected persons are susceptible to opportunistic
infections, and because some people with AIOS find
themselves physically handicapped during certain stages
of their illness, it is especially important that HIV-
infected persons live in safe, sound and sanitary
housing. Public standards of housing construction,
maintenance and inspection are often lower in rural
than in urban areas. Consequently, attention should be
paid to quality of housing occupied by HIV person in
rural areas. Consideration should be given to
providing public support for the timely improvement and
rehabilitation of housing units occupied by HIV-
infected persons when such an investment will enable
the HIV-infected person to live independently or semi-
independently at home for an extended period of time.
2. Adequacy of same in-hasm~ supportive services. The
quality and quantity of in-home supportive services
available to MIV-infected persons varies markedly from
county to county in rural areas within states and also
varies widely between states. State, sub-states
regions and counties should be encouraged by the
3
PAGENO="0234"
230
Federal Government to improve upon the quantity and
quality of their HIV in-home supportive services. This
would enable HIV-infected person to live at home
independently or semi-independently longer and would
avoid unnecessary or premature admission of HIV-
infected persons into more costly more restrictive
residential facilities.
3. Reducing the need to move for financial reasons. Due
to loss of income, HIV-infected persons may be unable
to pay their rents, mortgages and/or utilities. Under
such circumstances, HIV-infected persons are often
forced to move; not infrequently forced to move many
times. If the dwelling unit in which such a person
lives is safe, sound, sanitary and not inordinately
expensive, such a dwelling unit should be declared
Federally subsidizeable as long as the HIv-infected
person is capable of living independently or semi-
independently with the help of cost effective
supportive services, in that dwelling unit.
4. Assuring safe, sound, sanitary and affordable housing.
In cases where public housing and/or subsidized public
housing is not immediately available when urgently
needed by low income HIV-infected persons, the Federal
Government could allow an HIV-infected person who is
capable of independent living to seek market rate
housing in the community and provide a Section 8 or
similar subsidy to that person in such market rate
housing as long as the low income HIV-infected is
capable of living independently and/or until
alternative subsidized housing becomes available.
5. Assuring AIDS sensitivity within the Rousing Community.
Fear of AIDS and homophobia can interfere with the
appropriate delivery of housing services.
Consequently, it is important to make investments in
AIDS education for housing service providers arid for
the residential community.
B. Supportive Living Housing Systems.
1. Need to assure AIDS sensitivity to providers of
supportive living housing units. Again, AIDS education
is needed to assure effective use of existing
supportive living facilities.
2. Need for adequate, AIDS sensitive and emergency
transitional housing for NIV-infected homeless persons
in rural areas. Every rural county should have
provisions for assuring AIDS-sensitive emergency and
transitional housing for homeless HIV-infected persons
4
PAGENO="0235"
231
and families. For reasons of health and dignity, each
homeless HIV-infected person or family should be
assured a safe, sound and sanitary private room, with
appropriate bathing and eating facilities, and
supportive services as needed. operational funds for
such housing should be publicly financed.
3. Need for more specialized supportive living facilities,
such as halfway houses, board and care facilities, and
AIDS sensitive adult foster care in rural areas. More
specialized facilities, like post-treatment halfway
houses for chemically dependent HIV-infected persons
should be developed on a sub-state regional basis, with
several counties sharing development and operational
costs, with State and Federal assistance, in those
cases where such AIDS sensitive facilities do not
already exist in rural areas.
4. Protecting HIV-infected persons from impoverishment.
Residents of supportive living housing systems, such as
transitional houses, half-way houses, board and care
facilities, etc. should not be required to pay more
than 30% of their income for such housing services.
The balance should be financed by local State and
Federal governments. This will enable residents of
supportive living housing systems to retain some
control over their income and a sense of independence
with respect to their living arrangements.
c. Residential Treatment Systems.
1. Assure that existing residential treatment facilities
are sensitive to AIDS. Here again, AIDS education is
needed to assure effective use of existing residential
treatment facilities.
2. Location of residential treatment facilities. Whenever
possible, such facilities should be located within a
reasonable distance of a home community.
3. Protect HIV-infected persons from impoverishment.
Again, a low-income person should not be required to
pay more than 30% of his or her income ~or residential
treatment costs.
D. Institutional Housing.
1. Need to assure AIDS sensitivity to providers of
institutionalized housing. Again, AIDS education is
needed to assure effective use of existing
institutional housing facilities and services.
S
PAGENO="0236"
232
O~'2O'9O j3:3g P.88
2. Location of facilities. Attempts should be made to
locates such institutional facilities within a
reasonable distance from home communities in rural
areas
3. Use of underutilized institutional facilities in rural
areas. In some rural areas hospitals and other
institutional facilities are underused. Consideration
should be given to converting at least part of those
facilities to alternative AIDS supportive housing
services such as chemical dependency treatment centers
and mental illness treatment facilities for people with
AIDS.
4. Prevent impoverishment of HTV-infected persons. Again,
HIV~infected persons should not be charged more than
30% of their income for institutional housing services.
CONCLUDING OBSERVATIONS. The aims of our housing and related
supportive service systems should be to:
1. Enable HIV-infected persons to live as independently as
possible for as long as possible;
2. Assure that each of the major housing systems provides
the housing and supportive services needed in a timely
and effective manor;
3. Minimize the need to move into restricted and costly
institutionalized housing systems;
4. Assure that the housing provided is safe, sound,
affordable and appropriate;
5. Assure that housing and related supportive service
costs will not impoverish HIV-infectecl persons.
HR3423 provides a good beginning toward the achievement of these
aims.
6
PAGENO="0237"
11 0 U S I N G, CO N I I N U U N
CLIENTS
DYSFUNCTIONAL
IMPAIRED
HIGHFUNCTIONING
o \iodcrately severe or acute disabili-
ties which require specialized, inten-
sive treatment.,
- Seriously, acutely mentally ill
- Mentally retarded
- Acutely intoxicated/chemically
dependent
- Severely physically handicapped
o Disabilities/handicaps require on- o
going support to maintain
independence. -
- Frail elderly
- Borderline retarded
- Emotionally/mentally ill
- Chronic chemically dependent
- Physically handicapjed
Minimal service needs met: through
independent or assisted use ci
community resources.
FACILITIES
INSTITUTION/\L
Intensive treatment, exclu-
sively in-house, designed to
stabilize acute/severe illness
or provide a high level of
support and structure.
- State hospital
- Community hospitals
- Nursing homes
RESIDENTIAL
* TREATMENT
In-house rehabilitation and
support focusing on the acqui-
sition of coping and indepen-
dent living skills.
- Rule 34 (MR facilities)
- Rule 35 (CD facilities)
- Rule 36 (Ml facilities)
- Rule 80 (physically
handicapped)
SUPERVISED
PLACEMENT
Supervision and support
designed to maintain or pro-
mote skills and prevent
abuse/neglect of vulnerable
populations.
- Board and care
- Board and lodging
- Supportive living
residences (SLR)
- Transitional housing
INDEPENDENT
HOUSING
A variety of adequate and
affordable housing options.
- Single room occupancy
(SRO)
- Public housing
- Subsidized housing
* - Independent cli~nts who do not
require or have completed
treatment.
PAGENO="0238"
CONFINUUN OF HOUSING FOR THE HOMELESS
EMERGENCY SHELTER
Overnight Shelter
* 24 hour Shelter
Battered Women Shelters
Runaway Youth Shelters
DETOX
Voucher to Motel
Crisis Unit
DEPENDENT
Board and Lodge
Board and Care
Supportive Living Residence
1/2 Way Houses
TYPES OF TRANSITIONAL HOUSING
1. Program rents property
2. Program owns property *
3.. Program subsidize rent agreement in client's name
4. Shared Housing
5. Program assists clients leaving a dependent living arrangement into an
independent setting.
TEMPORARY/TRANSITIONAL HOUSING
INDEPENDENT
Transitional Housing
Shared Housing
Rent Subsidy
LOW COST HOUSING
Subs Wired Housing
SRO Housing
03-OP Housing
Rental Market
PAGENO="0239"
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27-986 0 - 90 - 9
PAGENO="0258"
254
Supporting the transition into Post Hospital Care
VOL. 8 NO. 11 DECEMBER 1989
Features
The Abused Elderly 12
Despite periodic media attention, elder abuse remains a shadowy, complex problem that no
one fully understands.
By Charles Pee
Special Challenges of the Ventilator-Dependent Child . 20
Case managers can avoid rehospitalization of these high-risk children by following this home
care model that incorporates the parents as active caregivers.
By Geralyn Jehnsen, RN, MS. Jill Roll Meyer, RN, MS. and Cindy Kea Talecce, RN, MA
Home IV Drug Therapy 23
With so many HIV providers springing up, how does the discharge planner know which one to
By Grace B. Ketch, RN, MSN, CRNI
The Long Journey Called AIDS 28
The psychological trauma a patient faces when diagnosed as HIV ~osilive can be buffered by
a knowledgeable caregiver.
By Linda BrandO, RN, BSN, PHN
~I~!~iiILII=III=I
News 6 Coming Events 33
Taking Charge 18
Product File 34
Buyer's Guide
Oxygen Modalities 26 Off The Press 35
Continuing Care® A registered trademark of Stevenn Publishing Corp. Published monthty.© 1989 by Stevens Pabtinhing Corp., 225 N. New
Road, Waco, TX 76710. Phone (817) 776.9000. Publication of signed articles does not consticute endorsement of personal views of authors. All
rights resersed. Subscrsptien rate for Continuing Care is $48.00 for 1 year(t2 issues). Subscriptiens waited to Canada and Mesico, Please add
$8. For all other foreign countries, please add $15. The publisher is not responsible for the contents of the articles herein, and any person
following the advice or procedures in these articles does so at his or her own risk.
ii~a1ngnae~
Cover photo by Joe Griffin. Tori Page, model.
i~O~ia~i55e,su,ek
PAGENO="0259"
255
THE
LONG JOURNEY
CALLED
A~DS
A diagnosis of AIDS affects more
than a person's phyoical well being.
The newa that the virus haa found its
way into a body can often trigger a
number of psychosocial respanses.
Those working in the health care
field understand the chronic nature of
AIDS, while mast newly diagnosed
persons have to came to grips with the
facts for themselves. They feel their
lives are irreparably changed.
Blood tests that reveal a link to
AIDS often occur because of an unre-
lated medical problem. Rarely will
someone see a doctor specifically to be
tested far AIDS, as human nature
resists bad news. Hospitalizations for
surgery or perhaps an illness of
unknown cause may bring about the
test. Weight lass or diarrhea may begin
a search for a cause and result in the
discovery of an HIV-related illness.
Still, other people may seek out the
test in order to present a "clean bill of
health" ta a new partner or resolve any
doubt about a past partner.
Chemical dependency treatment
programs are one of the mast common
testing arenas. Ironically, as individu-
als decide to begin caring far their
health, they are asked to cope with the
emotional news of a positive test.
Intravenous drug users often assume
they carry the virus and wait for the
illness to manifest itself.
Another twist of fate is that unsafe
behaviors of seven to eight years ago
may haunt the present stability of
newly married couples thinking about
pregnancy.
Finally, the most emotionally-
charged reason to seek a test is the
awareness that an ex-lsver has just
died ofAlDS or that a current lover has
been recently diagnosed.
Blood tests are not sophisticated
enough to tell how long the virus has
~
By Linda Brandt
28
CONTINUING CARE
PAGENO="0260"
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PAGENO="0261"
257
died in a professional manner.
Knowledge of disability policies at
the workplace need to be available and
standardized. Education of fellow
workers at the work site is imperative
if support is to continue after eventual
disclosure. Tolerance for the
employee's search for wellness is
needed while he decides, "Am I living?
Or am I dying?" This period can bring
new-found spirituality and holistic
attitudes.
Diets may be closely scrutinized by
the infected employee as a way to
maximize health. Acupuncture, mas-
sage and visual imagery may augment
the healing process. In general, it is
safe to say that although the HIV-
positive person may appear healthy
physically, they face a real personal
challenge.
Dynamics of Those Nearby
Families may not be involved until
there isa reason to be. Partners, on the
other hand, are the first to hear the
news. This may cause a break-up if the
two are not stable in the first place. If
the relationship lasts through this
traumatic period, life planning for
wills, property and guardianships may
be a priority.
The infected partner may choose to
stop working, which often initiates a
host of financial dilemmas. Rent
becomes a monthly struggle. The ardu-
ous task of seeking public assistance
begins. A general rule of thumb regard-
ing economic assistance is that the
HIV-positive person is considered
capable of working, which means that
disability coverage is not available
from work or from the federal govern-
If the person infected chooses not to
work, the only program available is
General Assistance and food stamps.
In Minnesota, two denials from Social
Security are necessary to be eligible for
these entitlements. At $203 a month, it
is not feasible to live alone. Public
housing guidelines follow disability
criteria, keeping the HIV-positive per-
son, who is assymptomatic, out of
low-rent housing. This does become an
option once symptoms can be docu-
mented by a doctor and that doctor
writes a letter confirming the need for
low-rent housing.
Medical assistance guidelines vary
from state to state, but help is not
usually available until medical bills
are incurred. Choice of physician and
hospital clinic may be influenced by
insurance status because not all out-
patient services are available without
proof of insurance. Early treatment
and monitoring sf health increases
longevity so it is imperative that the
"well" person seek medical care.
Preventive treatments for pneu-
mocystis carinii pneumonia (PCP) are
lowering the frequency of infection.
AIDS clinics offer support through
long-term relationships with HIV-
positive persons.
Once the immune system begins to
be suppressed, the symptoms of MW-
illness begin. Choices about daily liv-
ing are impacted by. generalized weak-
ness, unpredictable diarrhea and lack
The initial phase of
coping usually
appears with
thoughts of suicide,
increased chemical
use and behavioral
acting out.
of appetite, all of which speed the
process of weight loss. The dread of an
opportunistic infection sends clients to
the doctor to rule out fevers, cancers or
PCP.
This preoccupation with illness can
actually isolate the client from a
broader perspective. At the same time,
friends and family are suspicious and
want answers to their questions. "Can-
cer" may be the excuse used at this
juncture to maintain privacy. This
charade becomes increasingly compli-
cated to continue and usually can be
resolved if addressed in a support
group.
At home, the dynamics may be
strained as each partner wonders who
`is-ill be the caregiver since it is likely
that both partners are infected. Both
have probably lost friends already.
Each fears abandonment and being the
surviving lover. Promises are made
that later make nuroink home place-
ment or foster home care difficult to
accomplish. Problems are often solved
through therapy and advice on these
After symptoms occur, HIV-positive
persons can more easily identify with
an AIDS organization to seek support,
volunteers and advice. If services hinge
on the presence of MW-positive symp-
toms, the client looking for assistance
may attempt to exaggerate his or her
health care picture. Doctors are asked
to verify that the symptoms are indeed
AIDS-related. If the doctor is unable to
find laboratory results to confirm
symptoms, he or she may face the
difficult position of telling the client
that the symptoms are not HIV-
positive related.
Full-Blown AIDS
Having a diagnosis of AIDS no
longer means sudden and sure deterio-
ration of health. With early medical
attention and observation, previously
lethal opportunistic infections are con-
* trolled.
The course of AIDS depends on the
AIDS-defining medical problem. A
diagnosis is made if an opportunistic
infection -is found, a cancer is found,
dementia is found or wasting syn-
drome is documented. A neurological
diagnosis of AIDS is less distinct, as
the symptoms may be transient and
gradual.
PCP is treatable with inhalation
pentamadine on a monthly basis.
Cytolomegalavirus (CMV) is treated
with W Gancyclovir, which is admini-
stered through a Hickman catheter in
the chest wall. This is useful for
long-term management in the home
setting. Cancers, such as Kaposi's sar-
coma orlymphomas, are treated as any
type of cancer might be treated. These
conditions are frightening if the person
with AIDS (PWA) does not feel a sense
of control and automony, especially in
the realm of decision-making.
When neurological changes occur,
another crisis may precipitate. Fear of
dementia or the inability to administer
self-care can be the turning point for
reaching out for help.
Difficulty with written forms or
remembering appointments can cause
suicidal ideation once again. At this
time, locating a key person to explore
these fears is a major care plan compo-
nent. The person with AIDS needs a
place to talk about death and dying.
Old angers need to surface and be
resolved, and family issues involving
feelings about caregiving often come
alive. This key person maybe an AIDS
buddy, a spiritual support person or a
therapist. When this work is com-
pleted, it becomes much easier to
reunite with distant family members.
Some support networks are risky.
The AIDS patient asks, "Should I go to
my church or synagogue? Should I be
honest with my support group? Can I
reach out to my hometown friends?
cooticaedoopoge32
DECEMBER 1989
31
PAGENO="0262"
The Long Journey Called AIDS
258
coetieaed from page3l
Should I allow an interview with the
preoo?"
Reaching out to help othero is self-
actualization in its moat condenoed
form. With newly found inner strength
and a oense of "wellness," the fineot
quality of life iosueo seem poooible.
Often writing poetry or songo reaches a
greater population of the "worried
well" and is a vehicle to croso numer-
ouo barriers.
While keeping the AIDS patient's
perception of needs as a guide, the case
manager acts as a reference person.
Referral to housing alternatives may
be paramount.
The Financial Dilemmas
The best financial solution is one
that requires only 30 percent of the
patient's income. Ifs subsidized high-
rise or apartment is not an option,
often transitional housing is a good
match. If 24-hour care is required, the
beat alternative may be adult foster
care. The Minnesota AIDS Project in
* Minneapolis is working with county
agencies to help recruit new foster
home providers, especially for PWAO.
It offers an alternative to nursing
home care in some cases. Gaps do exist
for adequately staffed housing for the
newly discharged from prisons or
treatment facilities for mental illness
and chemical dependence.
No matter what housing arrange-
ment exists, several services may serve
the patient at various times. Home
care nurses contracting with the cli-
ent's clinic generally make weekly
home visits when home treatments
begin. A home health aide may make
two to three visits for personal care. If
meals are a problem, home-delivered
meals or homemakers can be started.
Rides become an increasingly impor-
tant component for weekly lab checks
and weekly treatments as the client
needs to see consulting doctors.
When someone has an AIDS-
defining illness, his access to Social
Security Disability begins. If documen-
tation is clear, the patient should have
payment from that date forward,
although months of paperwork delays
are common. Because the details of the
financial systems are complicated, the
patient,can benefit by having an advo-
cate explain the numerous steps.
Where AIDS service agencies exist,
a life enhancement program is likely to
be available. This is entertainment
and networking for AIDS patients
aimed at decreasing isolation and
increasing self-esteem. At the Minne-
sota AIDS Project, clients get involved
in potluck dinners, committees to plan
for special events, and often receive
free tickets to various cultural events.
The projects strives to broaden the
client's outlook on life, allowing him to
feel a greater sense of control. With a
"reason" to get dressed each day, cli-
ents generally stay healthy longer.
If clients determine their own des-
tiny, health care professionals will be
rewarded by working with a more
whole and peaceful client. By facilitat-
ing team conferences, the client can
decide bow aggressively treatments
should be attempted. It could be that
minor skin rashes are more disturbing
than a "possible PCP," which would
require a bronchoscopy to diagnose. It
could be that the idea of volunteers in
one's home is more distasteful than a
nursing home placement. It could be
that a wasting syndrome is less "pain-
ful" than the technology of total paren-
teral nutrition and being tied to a
pump 12 hours a day.
It is clear to the AIDS team that
AIDS is a chronic illness. If health care
professionals can buffer the fears and
help AIDS patients find a healthy
inner self, their outer self will thrive.
MThezosta AIDS Peejeet iaMsaeapolis. MTh~ She
presideS eCho Ofierescta Asscciatic,, Cm Cshhriity of
Continuing Care welcomes uosslicited
manuscripts and queries far orticles. The
magazine publishes articles for discharge
planners, case managers and other cash-
nuity of care professionals on transitioniog
patients from the hospital to post.hospital
settings. Continuing Core encasrages
practical articles concerning treatment,
management, equipment selection, reha-
bilitatiun and reimbursement. Manu.
scripts must be submitted us so euctusive
basis, sod written in on informal sue Is I
prumote readability.
Members of
Clinic-Based Team
o HIV+ doctor and residents
0 Hospital-booed social worker
0 Clinic-based registered nurse
0 Hospital-baaod horns care
registered nurse
o AIDS service agency case
manager
o Spiritual support/pastoral support
.0 In-patient liaison registered nurse
Common Components for Case Mana~oment
HIV+ (Na Symplamsl HIV÷ ISymplamul AIDS-Detinirrg lllnoas
Woekplace louses Increased nick lime Crisis point again
Insurance problems Decreased produclivity Disability insuranco
HIV+ sapparl group May quit wilhaut plan Saicido proventian
Therapist tsr gAol and loss Humorous appointments 5tddien assigned
- issues Hams helpers assigned Transpartalisn nncds
AZT lab essrk Rule-nat tavern Aatsnsmy issues
Mcdilatioo Macrobislic diet Msnthly inhalaliso trealmonls
Sndergrsurd neds Ctont valantoers Daily IV Ihorapy it CMV
Cntples grsups AIDS/ARC support groups Medical assistance tar bills
Legal assislarco Financial crisis or to cover 20% cnpuy
Dawn-grade hsunirg Chemathernpy it KS.
Chom dependency treatment
Hsuslng mats
32
CONTINUING CARE
PAGENO="0263"
259
ci3,21/90 11:20 ~`l21444048517
Freddie
Mac 1VI~fllO
Frsm
Christie I~. MontgOmery~/ February 6, 1990
Ts S~hj~c~
Dennis D. Dow-ney Revlon Apartments Commentary
Revlon Apartments at 720 N. Lancaster in Dallas was acquired by
Freddie Mat through foreclosure in December 1987. The property was
in poor condition with a collection problem. To complicate the
physical deficiencies, the property is located in an area that has a
serious drug and crime problem. Rsvlofl was severely hindered from
the onset.
The property was going to require a rehab in the range of $8,000 to
$10,000 per unit. The specifications for the reh~b would include
replacing the entire heating and air conditioning System, replacing
at least one roof and repairing three others, correcting a bad
drainage problem that was affecting the foundation, repairing
walkways that were damaged and creating a liability for the
property, correcting sewer problems, making units ready for
occupancy that were destroyed, insulating exposed plumbing, and a
number of other items that were not priorities. The decision was
made not to rehab Revlon. The rehab would cost between $288,000 -
$360,000. The cost of the rehab could not be justified by
additional value through an increased sales price. The property
would be maintained, collections improved, and occupancy increased
with a ninimu'n spent to accomplish this.
Revlon had a U.P.B. of $477,741 and was appraised in November of
1987 for $325,500. After some analysis~ the property was listed for
$216,000 based on the declining nature of the neighborhood and the
poor condition of the property. Property values in this
neighborhood were not on the incline in 1987 nor are they in today's
market.
Mike Meridian, President and C.E.O. of the P.W.A. Coalition, had his
office across the street from Revlon. The P.W.A. Coalition also had
an apartment complex that they were in the mi6~t of rehabing behind
Revlon. He inquired about the disposition of Revlon expressing that
the P,W.A. Coalition was interested in purchasing Revlon to be used
to house people with AIDS.
Freddie Mac negotiated with Mr. Meridian and came to an offer
acceptable to both Freddie Mac and the P.W.A. Coalition. Freddie
Mac gave the P.W.A. Coalition a price that would allow them to rebab
the property so that it meets code for the City of Dallas and
provides decent housing for their community.
The property was sold on September 30, 1988 for $178,500. $37,500
below the listing price. The P.W.A. Coalition was given six months
of no payments to give them time and funds with which to start the
rehab. There were Federal and City funds available for the
necessary construction also.
PAGENO="0264"
260
03'21'90 11:21 `~`121444048517 ~006
Dennis D. Downey
February 6, 1990
Page 2
Before either the Federal Or City funds could be applied for,
approved and the rehab construction started, one unit at Revlon
caught fire. It was a major fire that destroyed the unit that it
started in and damaged seven other units. The insurance proceeds
were not enough to restore the eight units to their original
condition. The P.W.A. Coalition was not aware that they could have
negotiated the insurance claim to obtain more money. There were no
funds available to pay for the difference in the construction and
the insurance proceeds. The burn units wore left to deteriorate.
The P.W.k. Coalition had a series of unfortunate events that
prevented them from starting the rehab in a timely manner to
oliminnte further deterioration of Revlon.
o Funds were not readily available to begin the rehab
construction.
o The property insurance was cancelled and there were problems
associated with getting a new policy due to the condition of
Revlon.
o One unit burned and seven others were damaged.
o Insurance proceeds were not sufficient to rebuild the burn
units. Construction was never started.
o During the wrec3c out of the burn units, a well meaning
contractor tore out more of the burn units than was
necessary leaving more construction needing to be done.
o There wore no funds available from other sources to maintain
Revlon, therefore, it continued to deteriorate.
o There was very little rental income coming into Revlon. The
property was in such poor condition that many of the units
could not be occupied. The heating and air conditioning
system was getting worse which also hindered the occupancy.
o The Federal and City funds available for rehab were not
approved nor made available in a timely manner.
o The City funds were just approved on on January 24, 1990.
No progress was seen at Revlon until December 1989.
During the two year decline of Revlon, Freddie Mac aided the P.W.A.
Coalition with suggestions, recoranendations, actual help with issues
that they did not have experience with and offered assistance with
financing until their funds could be approved and made available.
The people at the P.W.A. Coalition did not have experience with
rehab or fire construction or the specifications for the
construction. They were at a disadvantage.
PAGENO="0265"
261
~OO7
03/21/90 11:22 `~`121444048517
Dennia 0. Downey
February 6, 1990
Page 3
Mike Meridian, the original Freddie Mac contact with the P.W.A.
Coalition, was transferred to Washington D.C. Don Maison, Executive
Director, took Mr. Meridians place. Mr. Maison had come into a
project that was seriously delayed and disorganized and tried to
proceed.
Freddie Mac held another meeting with the P.W.A. Coalition, Don
Maison. in November 1989 to see if once again any assistance could
be offered. Dennis D. Dosoney, Director, Multifamily Operations.
offered a forbearance of the mortgage paymento for a maximum of six
months while the Federal and City funds wore in their final approval
stages so that construction could begin immediately. The P.W.A.
Coalition wanted to demolish the eight burn units and use the
insurance proceeds to bring the remaining units to a habitable
conditioO. This suggestion was approved by Freddie Mac based on the
excessive Cost involved with the rehab of these units. The meeting
was very productive; progress was finally seen.
After many auggections were made for the P.W.A. Coalition to use
either general contractors or consultants to come in and take the
project over, organize it, and see it to completion. Mer*Oar
American Development was chosen by the P.W.A. Coalition based on
Freddie Mac's recommendation. Mer*Car signed a contract on December
7, 1989 to be the consultant, architect, and general contractor for
the entire project. Ft was at this time that concrete plans were
developed nod work on Revlon actually started.
o The building containing the eight units affected by the fire
has been torn down.
o Plans and drawings have been completed for thq reha.b.
o On January 24, 1990, the City of Dallas approved $238,000 in
rehab funds. This is a forgiving loan.
o Rebab construction will begin immediately.
Revlon will be a definite addition to the community when
construction has been completed. It will not look like the seine
complex. The P.W.A. Coalition and Freddie Mac will have made a
contribution to the Lancaster community in appearance, clientele,
and assisting in securing and improving the neighborhood. The City
of Dallas is pleased.
CLM/jf:26851
PAGENO="0266"
03/21/90 1L23 ~`121444048517
~d~rway at ASD
l,F.ClN NEXT WEEK
Icy Dr:NNI, ~`1RClIER
O lucia l~ at AllIS heft-ices of Dallas (for-
nwtl-- St WA Cztlitittn) announced
it'. `tech hits r'.'rott-mo-,n work wilt begin
solnat it.' c-Its httuainglhcilirvlr)çatedlust
behind AiD's ttriQinal PWA House In North
262
121008
Oak Cliff
Arthitittttt. slin'. fir rcdeschtpng the
f.iilov flr~n ~~Il for lot destolition ti ctgltt
1t',~ -,ttoun,ts.lcstrtt--cdbvfirelatttveir.Th'.'
n,rn:ining 28 tntirs. utilized as hrtusintt
hr indigent l-ltV infected individuals
tot their rmm roll be
cots-If Ihn'.tngthcdernolitlOtlflltaOttof
Is. totrolitol troits't. Morgue Amertcan
5-st ~itl ss~ts ~wardrd he contract for
Freddie Mac officials
suspended fiarther
inort age paymenla until
the remtdaIngun1~ are In
a livable condition.-
construction mvrkat the Rbt1l~n.
The builditsg in being puedta~ddbe ASP
from Freddie Mac, a govsnmentit~5btteue
r,rogratn. .ln~a ~
lender approved all ciofW~~t~
cnrculice director Don MaInôtt Itt addition.
~uggestionuspt~~5~
payments pn the facility `until the igmaining
211 units are in a livable cni~ots Malnon
addeci
.Tltrounh a City of.Dallan program erhi~h
,ffvrn sclf-fctrgiving Icurmea itznotsantg9fll,,
munitv asissassceordeveloomctst profel2s.
ASI) will. obtain municipal financirtg for
several of the renovanlt~cs.s at the.,P.tvkm
buildirtwtncludiflg a new roof foethetetnire
isew heating a±eI'aIc conditioning.
replacem'ent of doors astdDindows and all
(xherlnterlnrandmcterthfrenounioru nerd
.~u0 l~th~nbtti~db't* up to utnsdaesli
~ offIcials
also plan to tear out giad ~citntruct the
~
fence around the jtràpeiw,:it~ated at the
nener of Lancaster and Cereal streets
Ours mill be tIe first program in the City
of- Dallas to utjlu~aff8elf-foteivtng oats
program." Miwit:aid. Under terms of the
loan, a portion pf the moneysuillbta foettlven
~di year fuca4-5~at period p~vIdedASD
prograrnsremalttltlvlace. "Itappearothatwe
may even qualify for additional ttitnev tttit
and above whatstethcntght we montld get.
he added. ntsnn that the additional Fandis
ifonxained,wtstaldb~tssgd torrplacetltg,~
large bce waterheaters at the facility.
- Maisrtn said the demolition plta~e il
ptoit.'ct Is nchgduled to gee undercvnv lank
a ~` -.
PAGENO="0267"
263
gj002
03/21/90 11:17 `~`121444048517
SU~04ARY OF SODTHWEST AFFORDABLE HOUSING PROJECTS
(Low/Moderate and Social Purpose)
I. Bei1o~ApaLtmaAtaL5.HQ~~a~1S.).
Revlon Apartments in Dallas, Texas were acquired by Freddie Mac through
foreclosure in December, 1987. The property was in poor physical
condition and was located in an area that had serious drug and crime
problems.
It was determined the property would require an extensive rehab in the
range of $8,000 to $10,000 per unit for a total cost between $288,000 -
$300,000. The decision was made not to rehab as the cost could not be
~ustifieti based on a lack of additional value after rehab.
After some analysis~ the property was listed for $216,000 based on the
declining nature of the neighborhood and the poor condition of the
property. Property value in this area had been declining since 1985.
Freddie Mac entered into two contracts to cell the Revlon, however, both
contracts fell out during the inspection period. The People with Aids
Coalition (!`WA) inquired about the disposition of Revlon, exproasixlg that
they would be interested in purchasing Revlon to be used for housing
people with aids. The only catch wes that they had no cash!
Freddie Mac negotiated with the PHA on the basis that they had funds
available through grants and charitable foundations. The property was
cold to the PWA for $2i6,000, Freddie Mac financed the transaction, PHA
paid closing costs, and Freddie Mac took back a second mortgage in the
amount of $37,500 to secure the down payment that was due and payable in
six months. It has since been paid in full. As en additional
enhancement, Freddie Mac agreed to six months of no payments to give the
PWA time to apply for Federal and City funds.
During the year after the sale, the PiTA bad a series of unfortunate events
that prevented them from starting the rehab in a timely manner:
o Funds were not readily available - (Feds were waiting on the
City. City was waiting on the Feds, insurance company was
waiting on anyone they could.)
o Insurance was cancelled and there were problems associated with
getting a new policy due to the J.Qn~iti2a of Revlon.
o Eight units burned.
PAGENO="0268"
264
03/21/90 1118 `~`121444048517 PJØØ3
Southwest Affordable Housing Projects
Page Two
o Insurance proceeds were not sufficient to rebuild the burned units.
o There were no funds available from other sources to maintain Revlon
therefore, it continued to deteriorate.
o There was very little rental income coming into Revlon. Units were
in such poor condition that many could not be occupied.
o The heating and air conditioning system was deteriorating.
During the year or so of decline, Freddie Mace staff aided the PWA with
suggestions, recommendations and actually helped with other business
i~~ues in which the PWA had no experience.
In November, 1989, Freddie Mac called a meeting with the PWA coalition.
Freddie Mac's staff suggested a team effort was needed to complete the
rehab of Revlon. Freddie Mac was willing to forbear mortgage payments
for a maximum of six months, provided the PWA hire a professional to help
secure the funds, take the project over, organize it, and see it to
completion.
On December 7, 1989, PWA Coalition chose Terry Moore of Mar-Oar American
Development; as the consultant, architect, and general contractor for the
project. Since that time, concrete plans and decisions have been made:
o The building containing the eight burned units has been torn down.
o Plans and drawings have been completed and approved for the rehab.
o On January 24, 1990, the Cityof Dallas approved $238,000 in rehab
funds secured by the property as a forgiving loan over 15 years
(second mortgage). (See attached letter and articles.)
o Construction will begin immediately.
Sevion will be a definite addition to the community once the project is
completed. (See attached drawings.) Freddie Mac and the WA Coalition
will have made a contribution to the community in appearance, clientele
and assisting in securing and improving the neighborhood. There is no
doubt the City of Dallas Is pleased and the WA is grateful.
PAGENO="0269"
ST PAUL
II~ONEER II~R~SS
BJ~SPATCH
Death is no stranger to the
heartland. Itis as natural as
the seasons, as inevitable as
farm machinery breaking
down and farmers' bodies giving out after
too many years of too much work.
But when death comes in the guise of
AIDS, itisa disturbingly unfamiliar
visitor, one better known in the gay
districts and drug houses of the big cities,
one that shows no respect for the usual
order of life in the country.
The visitor has come to rural
Glenwood, Minn.
Dick Hanson, a well-known liberal
political activist who homesteads his
family's century-old farm south of
Glenwood, was diagnosed last summer
with acquired immune deficiency
syndrome. His partner of five years, Bert
llenningson, carries theAIDS virus.
In the year that Hanson has been living
- and dying - with AIDS, he has hosted
some cruel companions: blinding
headaches and failing vision, relentless
nausea and deep fatigue, falling blood
counts and worrisome coughs and
sleepless, sweat-soaked nights.
He has watched as his strong body,
toughened by 37years on the farm,
shrinks and stoops like that of an old man.
He has weathered the family shame and
community fear, the prejudice and
whispered condemnations. He has read
the reality in his partner's eyes, heard the
death sentence from the doctors and seen
the hopelessness confirmed by the
statistics.
But the statistics tell only half the story
- the half about dying.
Statistics fail to tell much about the
people they represent. About the people
like Hanson - a farmer who has
nourished lifein the fields, a peace
activist who has marched fora safer
A special reprint of the Pulitzer Prize-winning series
Story by
Jacqui Banaszynski
Photographs by
Jean Pieri
Chapter I
Reprinted from
Sunday, June 21, 1987
C)1
PAGENO="0270"
planet, an idealist and gay activist who
has campaigned for socialfustice, and
now an AIDS patient who ref usesto
abandon hie own foture, however long it
lasts.
The statistics say nothing of the joys of
a carefully tended vegetable garden and
newkittens underthe shed, of tender
teasing and magic hugs. Of flowers that
bloom brighter and birds that sing
sweeter and simple pleasures grown
profound against the backdrop of a
terminal illness. Of thepowerfol bond
between two people who pledged for
better or worse and meant it
"Who is to judge the value of life,
whether it's one day orono week or one
year?" Hanson said. "I find the quality of
lifoa lot more important than the length
of We."
Much has been written about the death
that comes from AIDS, but little has boon
said about tholiving. Hanson and
Henningson want to change that They
have opened their homes and their hearts
to tell the whole story - beginning to
end.
This is the first chapter.
PJ, ho tiny snapshot is fszzy and
stained with tnt Two men in
whito T-shirts and corduroys
stand at the edge of a havnyavd,
their muscled arms around each other's
shoulders, a puznled bull watching them
trom a field. The picture is overenposed,
but the of feet is pleasing, as if that
summer day in 1982 was washed with a
bit too much sun.
A snmmer later, the same men - one
hoarded and one not, one tall and one
short - pose on the farmhouse porch in a
meek American Gothic. Their pitchforks
are mean looking and caked with manure.
But their attempted severity tails;
dimples betray their humor.
They are pictured together often
through the years, draped with ribbons
and bottom at political rallies, playing
with their golden retriever, Nels, and,
most frequently, working in their lavish
vegetahle garden.
C C C
Ii anson sat with his partner,
Bert Henningson, in tho small
room at Minneapolis' Red
Door Clinic on April 8, 1986,
waiting for the results of Hanson's AIDS
screening test
Be wouldn't think about how tired he
bad been lately. Be bad spent his life
betting hay bales with ease, but now was
having trouble hauling potato sacks at the
Glenweod factory where he worked part
time. He had lost 10 pounds, had chronic
diarrhea and slept all afternoon. The
dishes stayed dirty in tho sink, tho dinner
uncooked, until Henningson got home
from teaching at the University of
Minnesota-Morris.
It must be stress. His parents had boon
forced off the farm and now he and his
brothers faced foreclosure. Two favorite
uncles were ill. He and Henningoon were
bickering a lot, about the housework and
farm chorus and Hanson's dark mood.
He had pot off having the AIDS test for
months, and Henningson hadn't pushed
too hard. Neither was eager to know.
Now, as the nurse entered tbe room
with bin test results, Hanson convinced
himself the news would ho good. It bad
been four years since he had indulged in
casual weekend sex at the gay bathhouse
sn Minneapolis, since ho and Hennisgson
committed to each other. Sex outside
their relationship had been limited and
}J ansontsoneof 210
Minnesotans and 36,000
Americans who have boon
diagnosed with AIDS since the
disease was identified in 1911. More tban
half of those patients already have died,
and doctors say it is only smatter of time
for the rest The statistics show that 10 to
90 percent of AIDS sufferers die withtn
two years of diagnosis; the average time
of survival is 14 months after the first
bout of pneumocystis - a form of
pneumonia that brought Hanson to the
brink of death last August and again in
December.
"For along time, I was just one of
those statistics," Hanson said. "I was a
very depressing person to be around. I
wanted to get away from me."
He lost 20 more poonds in the two
weeks after receiving his test results. One
of his uncles died and, on the morning of
the funeral, Hanson's mother died
unexpectedly. Genevieve Hanson was 75
years old, a gentle bet sturdy woman who
was especially close to Dick, the third of
her six children. He handled the
arrangements, picking gospel hymns for
the service and naming eight other
women friends as honorary pallbearers
- a first in the history of their tiny
country church.
The psctures drop off abruptly after "safe," with no exchange 01 semen or
1985. One of the few shows the taller man blood. He bad taken care of himself,
picking petunias from his mother'u grave, eating homegrown food and working
Hots startlingly thin by now; ass friend outdoors, and his farmer's body always
said, "like Gandhi after a long fast" Hss had responded with energy and strength. But Hanson never made st to his
nun-bleached basr has turned dark, hss Until mother's funeral. The day she was buried,
bronze sksn pallsd Hss body seems slack, "I put my positive thinking mind on be collapsed of exhaustion and fever.
and thought I'd be negatsve," Hajsson That night, Henningson drove him to
as if it's cavsng in en itself. -* said. "Until I saw the red circle, Glenwoed for the first of three
The stark evidence of Dsck Hansen's The reality hit him like a physical hospitalizations - 42 days worth - in
eletersoration mars the othersvsse rich punch. As be slumped forward in shock, 1986.
memories captured in the photo album. Henningsen - typically pragmatic -
But Hanson said only this: asked the nurse to prepare another
"When you lose year body, you become needle. He, too, must be tested.
so much closer to your spirit It gives you Then Henningsen gathered Hanson in
more emphasis of what the spirit is, that his arms and said, "I will never leave you,
we are more important than withering Dick"
skin and hone."
PAGENO="0271"
"Dick waa real morbid last nnnnmer," Henningsos
said. "He led people to believe it was cnrtains, and What started as a farewell party, a eulogy of 5orta, maybe I can he ooe of those miracles, the one who
was being very vague and dramatic. We all said to tisflWd into a celebration of Hanson'n life. Folk proves the experts wrong."
he hopeful, hot it was as if something had gripped his 5iflfer Larry Long played songs on as Indian
psyche and was palling him steadily downward week medicine man's healing Hate. Friesds fathered in a a fl a
of people lined np to embrace Hansen and of underdog caoses - always liheral,
after week." faith circle to will their strength to Hamen, Dozens simon has spent his life on the front line
Hansen had given up, but llenntngsen refused to. Henningxen. For mmt, it was the first time they hail oftes revolutionary and sometimes
He worked franticallj to rekindle that spark of hope touched as
- and life. He read ansen news articles shout AIDS patient. unpepular
premising new AIDS drugs and stories of terminal "People are coming through on this thing and "Semewilere along the line Dick was exposed to
cancer patients defying odds, He brooght home peeple are decent," Hansen mid, "We find peeple is social issUes and taught that we can make a
all walks of life who are withason this struggle... differelote," mid Mary Stsckpeel, a neighher and
tapes a at the power of peattive thinking and fed It's thst kind of thing that makes tt all worth it." fellew political activist. "That's what Dick has been
Hanson healthy feed. He talked is him steadilyof
pelitim undo the work that remained to he done. So when the pneumonia came hack is December, all aheut - showing that one person can make a
this time with mere force, Hansen was ready ~ difference."
He forced hinsnelf, and sometimes Hansen, is fight. Hansen put it in terms less grand: "Yea kind of
work is the garden, making it bigger than ever. They
There's something that grows more each year than
slanted 51 varieties of vegetables teas erganic, "The denier didn't give him any odds," Henningses have to bean etereal optimist to he a farmer,
gIn-yield plot and christened it the Hope Garden. saul. Hansen was pat ann respirator, funeral
arrangements were diacuased, estranged relatives what you pat into the farm:... I've always heen
Hut Hansen returned to the hmpital is Angast, were called to his bedside, isvelved on trying to change things for the hatter."
dangeremly ill with the dreaded pneumonia. His "He wrote me a note," Henningxen mid. "When He was bore into the national prosperity of 195i
loeked and wa ed like an ald-man version of can I get eat of here?' He and I Lad never lied to and grew ap throagh the social turmoil of the 196is.
weight had dre Ped to 1t2 frem his meal 161. He
hlmaeli. A fifth-grade teacher sparked his enthusiasm in John
each ether, and I wasn't aheat to start. I mid, `Yen F. Keanedy'o presidential campaign. He was t3
"I had an eat-ef-bedy type experience there, and might begetting oat of herein two or three days, bat when his father joined the radical National Farmere
even thought I had died for a time," he mid. "Itwas it might he God you're going to see. Hut there isa Orgaoisation, leek the family to picket at the Land
completely qatet asd very calm and I thought, "rhis slim chance, so if you'll just fight...'" O'Lakes plant on nearby Alexandria and participated
is reallç~iice.' I expected sesoecentact with the next is a notenom milk-damping action.
world. en I had thIn conversation with God that it People from Hansen's AIDS sappert group stayed He later fed rural campaigns for Eugene P3
wasn't my time yet, and ha nest me hack." at the aspital reand the clock, is shifts, talking to McCarthy, George McGovern, Hark Dayton and his
him and helding his hand as he drifted is and oat of a "~
Hanaen was home is time to harvest the garden, coma. Friends brought Christmas to the ~ carrent here, Jesse Jackson. He led pretests against
and to freeze and can its beenty. He had regained henpital roem: cards papered the walls and a giant the Vietenso War, and was a conscientious obiectot.
come of his fermer apnnk, anol was talcing an interest ohetograph of Hansen's Christmas tree, the oneleft He organixed rival factions to try to step
again is the world around him chat e farmhouse, was hang. ceestrectien of the high-voltage power line that
"Fd be sitting noitto him on the coach, holding his The rest was up to Hansen, sunken threagh westere Minnesota.
hand, and once isa while he'd get that little nmlle en He was an early member of the farm activist
his face and ned like there was something to hold en "I pat myself is Ged'o healing ceceen of love and
to," Hennlngnen said. "And a nmall beam of life had my miracle," he mid. "I call it my Christmas groap Grenndswell, fighting to step a neighber's
fereclsoare one day, his own family's the next. The
would emerge." mirac e. 433-acre Hansen farm has heen whittied to 41 by
A month later, Hanson'n spirits received another He was released frees inteasive care on Christmas hankreptey', Hansen and Henningsen are strugg isg
boost when he was henered at a macsive find-raising Eve day and sisce has devoted iota life to carrying a to salvage the farmhouse and some surrounding
dleaer. Its spemore included DFL notables - among neldom-heard message of hope is ether AIDS wetiands.
He has been arrested five tithes, staged a fast to
them Gev. Rudy Perplch, Lt. Gev. Marlene Johnaon, rtieatais give them -and himself - a reasen te
St. Paul Mayer George Latimer, Minneapolis Mayer ye as science races is find a care. draw attentian to the pewer line jorotest and steed at
Den Fraser and Cengrensmen Brace Vento sad
Martin Sahe - and redical political activiata Hansen. `rd like to think that God has a special parpese the podium of the 1910 DFL district convention to
had worked with ever the yearn, farmem who had for my He," he mid. His omile under the thinning aeaoeace - for the first time publicly - that he
steed with him to fight farm foreclesares and the heard is sheepish, faith is personal, and easily was gay. That same year, he was elected one of the
West Central pewerline, wamen who remembered mineadereteed. first openly gay membere of the Democratic
his esppert daring the early years of the women's "I don't want is come acrooa like Oral Roberta, National Committee and, in 1084, made an
anauccessfal hid for the party's nomination for
movement, mom of the gay and lesbinn but. . .1 believe that God can grant miracles. He has Congress from the Second District to 1983, he and
community and other AIDS a ferern. is the past and does now and willis the fatere. And Heeningson were phatographed in their fields for a
PAGENO="0272"
Newsweek magazine story about gays responding
to the AIDS crisis; neither knew at the time they
carried the virus.
"He just throws himself into a cause and will
spare sothsug," Stackpool said. "He will expose
himself totally to bring out the desired good."
Now the cause is AIDS. The struggle is more
personal, the threat more direct. But for Hanson, it
has become yet another opporturnty to make a
difference,
"Ho's handling this just as he would anything else
- wsth strength and lots of courage and hope," said
Amy Lee, another longtime friend and fellow
activist, "And with that pioneering spirit. If there's
anything hems do, any way he can help other
victims, any time he can speak - he'll go for it."
Hanson has become one of the state's most visible
AIDS patients. He and Henningson are frequently
interviewed for news stories, were the subject of a
recent four-part series on KCMT-TV in Alexandria
and speak at AIDS education seminars in churches
and schools throughout the state. Last month,
Hanson addressed the stale Senate's special
informali,inal meeting on AIDS.
"I want to take the mask off the statistics and say
we are human beings and we have feelings," he said.
"I want to say there is life after AIDS."
Rather than retreat to the anonymity of the big
city, as meny AIDS sufferers do, Hanson has
maintained a high political profile in Pope County.
He is chairman of the DFL Party is Senate District
15. He and Henningson continue to do business with
area merchants and worship weekly at the country
church of Ilanson's childhood, Barsness Lutheran.
"I've always been a very public person and I've
had no regrets," Hanson said. "One thing my dad
always emphasized was the principle that honesty
was the m(ot important thing in life."
Hanson md Henningson use their story in
personalim the AIDS epidemic and to debunk some
of the stereotypes and myths about AIDS and its
victims. They are farmers who have milked rows,
slopped hogs and haled hay like everyone else. Their
politics and sexual Orientation may disturb some.
But their voices and values are more familiar, and
perhaps better understood, than those of some of
their urban counterparts.
"It makem people aware that it can happen here,"
said Sharon Larson, director of nursing at Glacial
Ridge Hospital in Glenwood.
That honesty has carried a price. A conservative
Baptist miujister from Glenwood criticized their
lifestyle at a community forum and again ins
column in the Pope County Tribune. Some of
Hanson's relatives were upset by the Alexandria
television show and demanded he keep his troubling
news to himself. There have been rumblings in his
church from people concerued about taking
communion withhim, and a minor disturbance
erupted isa Glenwood school when his niece was
teased about him.
But his connections also carry clout.
"It brings ita little closer home to the guys in the
Capitol who control the purse strings," a fellow AIDS
patient said.
When they speak, Hanson and Henningson touch on
a variety of topics: the need for national health
insurance to guarantee equitable care, thecruelty of
policies that force AIDS patients into poverty before
they are eligible for medical assistance, the need for
flex-time jobs so AIDS sufferers can continue to be
productive, the imperative of safe sex.
They also stress the personal aspects of the
disease: the need for patients tobe touched rather
than shunned, the importance of support from
family and friends and, most dear to Hanson, the
healing powers of hope.
"I know there are some who die becausethey give
up," he said. "They have no hope, no reason to fight.
Everything they're faced with is so desperate and
dismal. . . .1 believe the biggest obstacle for us who
have AIDS or AIDS-related complex is fighting the
fear and anxiety we have overthe whole thing.
Every positive thing, every bit of hope is something
to hold onto."
under the prairie night.
"We asked the blessing of the spirit above,"
Hanson said. "It was a pretty final thing."
At first blush, they seem an unlikely couple.
"Bert the scholar and Dick the activist. . . In some
ways they're just worlds apart," Stackpool said. "But
politics brought them together, and now they take
delight in those differences and in their special
traits. They've figured out things many married
couples never come close to figuring out."
Henningson is bookish and intense, a Ph.D. in
intersational trade, a professor and essayist. He isa
door and organizer. He charts the monthly household
budget on his Apple computer, itemizing everything
from mortgage payments to medicine to cat food. He
sets a hearty dinner table, which is cleared and
washed as soon as the last bit of food is gone. He
buries himself in his work during the week, becomes
reclusive when be retreats to the farm on weekends
and has worked hard over the years to control an
explosive temper.
Hanson is more social, an easygoing, son-stop
talker with a starburst of interests. He spent 12
years detouring through social activism before
finally earuing a bachelor's degree in political
science at the university's Morris campus. He has a
political junkie's memory for names, dates and
events, thrills in company and is quick to offer
refreshments, having inherited his mother's belief is
friendship through food.
But they also have much in common.
~ ext month, Hanson and Henniugson will Henningson, 40, grew upon a farm near
celebrate five years together, perhaps Graceville, in neighboring Big Stone County. His life
with a gathering of friends and an paralleled Hanson's in many respects: the radical
exchange of rings. They exchfnged vows farm movement, anti-war protests, involvement in
privately that first summer while sitting in their car liberal political campaigns.
PAGENO="0273"
( C.
literally worked dawn to dusk."
That hard hut somewhat tdyllic life has heen
altered drastically by AIDS. Hanson does what he
can, when he can, perhaps baking cookies or doing
the laundry. Bet the burden of earning an income,
running the house and caring for Hamon has fallen
heavily on Henningsou's shoulders.
Hanson's medical bills - totaling mere than
Both suppressed their homosexuality until they $50,000 so far - are covered by welfare.
were almost 30. Hanson kept so active with politics Henningsou's temporary job at the state Department
and the farm that be didn't have time for a social of Agriculture, whore ho writes farm policy
life. After acknowledging his bomososuslity, bin proposals, pays their personal bills, helps pay their
sexual life involved weekend excursions to the Twin apartment rent in the Twin Cities so Hanson csu ho
Cities for anonymous encounters at the gay near medical care during the week snd allows them
bathhouse. in keep the farmhouse.
"I bad to taste all the fruit in the orcbsrd," be said. "Dick's optimism in fine," Hessingson ssid. "But
"I bad some real special relstionsbips, but if they you have to help optiminm along now and then with a
suggested it just be us I felt trapped, like they were little spade work. I ended up doing all of the work
closing in on me." with no help. What could have happened is that I
Henuingson tbrow himself into graduste scbsol, * could have grown resentful and blamed the victim.
tried marriage and took usa demanding csreer in "But I tried to put myself in bis shoes - baying
Washington, D.C., as an aide to former U.S. Hop, pneumonia twiee - and with slimy auger and short
Richard Nolan. He divorced and returned to temper, could Olive with that? Could I even get
Minnesota, whore be enrolled ins human sexuality tbrougb that? I'd probably have the strength to go to
pregram at the University of Minnesota. He had afield and digs bole and when the time came crawl
three bomosexusl involvemenis before meeting in and bury myself. But I don't knew if I'd have the
Hanson at apolitical couvestiou. strength to do what be did."
"There wore some msjor forces workiug in Ibe So, their commitment to each other remains
universe that were compelling us together,"
Henuingson mid. "I don't know that we even bad absolute, perhaps strengthened by facing a crisis
much in my shout it I've always believed in together.
serendipity, but I also feel you bave to give "When you know that somebody's going to stand
serendipity a little help. So I didn't sit back and wait by you, and when they prove that tbey will, when
for Dick to call - I called him." they gu through what Bert's gone through Ibis past
Any doubta Hanson bad abeuttheir relstiombip year in putting up with me. . . you just know it's
were squelched by bin mother. Sbe visited tbe very, very special what you have," Hsmou mid.
farmhouse one Sunday morning with freshly baked n n
caramel rolls, which she served Hsmeu and
Heuniugsou in bed. Henningsou was accepted as part ~ scb week, Hanson checin in at thu AIDS
of the family, moved to the farm and eventually r'i-~ clinic at Hennepin County Medical Center.
He and Henningson mske the three~bsur
assumed financial respemibility for the family's
farm operations. Jj_..J drive to Minneapelis every Monday and
"It was so good in work together, to swest spend their week in the Twin Cities. Hesningsus has
ingetber, to farrow those sows and help the sows
have those little piglein," Heunisgsos mid. "We work through June sI the Agriculture Depsrtment.
Hsmou's fuIl~time job is AIDS.
Ho has his blood tested to determine his white
blood cell count - his body's nstursl defense
uysinm. It often is below 1,M0; a healthy person's
count would be closer in 5,000.
He has a pbysiml exam, chain with two or three
docinm, givm encouragement in fellow potiesin and
eeliecin bugs fmm the naming staff. He ins favorite
with the social workers, who tease him shout bin
inck of intermt in the women wbo flock in bin
exansination room escb week furs visit
He does weekly inhalation therspy, breathing as
antibiotic inin bin lungs in ward off the drmded
pueumonis. Then he buses in St Paul for along,
healing mssssge from one of several locsl massage
therspisin who donate time to AIDS patienin.
Thursday mornings find him at the University of
Minnesota Hospital and Clinic for eye treatmeata.
Doctors inject medicine directly into bin eyeball in
thwarts virus thst is attacking bin vision.
Sometimes the needle punctures a blood vessel,
leaving Hssses with bright red patches in bin eyes.
On Thursday nighin, be and Heusiugsou attend an
AIDS support group meeting, wbere as many as 30
pstienin, relatives sud friends gstber to sbsre
comfort and informstiou.
For night months, Hansen has taken AZT, or
axidothymidine, an experimental dreg believed in
prsloug life for AIDS sufferers. He takes other drugs
in couninr the ususes caused by AZT's high toxicity,
sed be in watched closely for hone marrow
suppression. Ho uses various underground
trestsnents, all with his docinr's knowledge. He rubs
solvent on bin skin in try to stimulste a rmponse
frem his immune system, and spreads a home.
brewed cholesterol agent on his toast, hoping it will
help render the virm inert.
He watches bin diet to prevent diarrhea sad takes
various prescription drugs for depression and
anxiety.
His spore time, wbst there is of it, is devoured by
long wsiin for the buser slow wslin in his various
appointmeuin. He naps often to keep his energy level
up and spends evenings wstcbiug the Twins us TV.
Heading has become painful for bins, strsiniug his
eym sod making kim dizzy.
"It comes back sod back and back mssy times,"
be mid. "Is this my intal life? Has the ilineso becorne
such an aII~encompassing thing that my life will
never be judged by anything but this brsod of
AIDS?"
Weekends are spent on the farm, where Hanson
often can be found kneeling in bin flower beds. The
impotieus, moss roses and Sweet Williams are
slanted easecisllv thick this summer, Hsusos was
PAGENO="0274"
"I gotpretty emotional about it," he said. "But
Bert hel me and said, `Don't be afraid. Don't fight Henni.ngson sits next to him on the bed and thumbs
eager to see their cheerful pinks and reds cover the it.' And I remember a year ago when I was so sick, through their photo album, recalling lighter times
crumbling stone foundation of the old farmhouse. He and she was reaching to me, and I was so scared I Suddenly, Hanson waves his hand vaguely, at the
insists on having fresh flowers in the house every was almost pushing her away. And Bert said not to room, at his life. "I'll miss all this," he confided. "I'll
day, even dandeliom and tbistles. Once, after fight it, to let her comfort me even if she's reaching just miss all these wonderful people."
pranksters broke the peony bushes in the church to moon a level we don't understand... Then he and }fenningson discuss - gently - the
cemetery, Hanson gathered up the broken blossoms "There are days I think I'm just going to get out of logistics of his death. Should he he placed in a
and took them home, placing them around the house this, put this whole thing behind me and get ajob and nursing home if be becomes invalid' Should life-
in shallow bowls of water. go on with my life again. Then I have a rough day sustai~g measures be used if he falls into a coma
Or be can be found singing in the empty silo, like this and I have to look at things much more again' Should he donate his body to research'
practicing hymns for Sunday's church service. His realistically." The morbid conversation in held in matter.of-fact
voice in sweet and natural, with a good range. It is Hanson seldom talks of death. When his health is tones and seems to soothe Hanson It is Henningson's
inherited, be says, from his mother, who sang to him stable, there seems little peint. He has beaten the way of pulling out the emotions, the soft rage and
when he was in the womb and tuned in opera on the odds before and will, he says, again. fu~ty that Hanson otherwise would keep tucked
radio in the farm kitchen when he was a youngster. "Intermittently, there has been some denial," said inside.
He has sung for his brothers' weddings butts better, his physician, Dr. Margaret Simpson, director of the "Talking about things like that helps you
be says, at funerals. sexually transmitted disease clinicat Hennepin underitand your mortality, that it may nst be much
County Medical Center. "That's not too surprising, longer," Henningson said "And that helps relieve
On hot summer nights, bound Henningson sleep in When you're feeling good, it's easy to think this isn't your fears. Dick's fears are not so much for himself
twin beds in a screened perch upstairs. The room is ime. as for me. Will I live out here all by myself? Will I
kept cool by towering shade trees and constant
breezes blowing off the marsh that winds in front of "But he's deteriorating again, and it's worrisome. find someone else' Isay don't worry about that, it's
the house. From there, themes note the comings and I don't make predictions, but I think now in terms of out of yourcontrol"
goings of their neighbors: egrets and blue herons, weeks and months rather than months and years." But Henningson, too, is shaken. He sits at the
Canada geese that feed on what Henningson calls Hanson senses that urgency. But he remains a window next to Hanson's hospital bed, and holds his
Green Scum Pond, a doe and her buff-colored fawn. fighter. His attitude, he says, inset one of delusion hand. Finally, be abandous the diversionary talk and
Therein an owl in the nearby woods, a peregrine but of defiance, cries. He is worried about losing the farm, about the
falcon nesting so the farmhouse eaves and an unseen "I think I'll know when the time is right and it's political hassles involved in getting housing
loon that sings to them at dusk. coming," be said. "Should it be, I'm ready to meet assistance, about getting a job after his contract
If the weekend in slow, the weather is mild and ~ my maker. But I'm not ready to give up and say with the state expires, about sot having enough time
energy is high, Hanson can be found in a dinghy there's nothing that will turs around sol can live."' left with Hanson.
somewhere on Lake Miunewaska, the sparkling A week later, Hanson is in the hospital. The And he can't help but worry about the AIDS virus
centerpiece of Pope County. He's a skilled headaches are worse, and doctors do a painful spinal in his body and his own health prospects Although he
fisherman, and remembers weekends when he would tap to determine if the AIDS virus has entered his guards his health carefully and is optimistic about
haul home a catch of 200 pan fish for one of his brain. His white blood cell count is dangerously low, medical progress on the AIDS front, he fears that the
mother's famous fries. but a transfusion is too risky. stress of caring for Hanson is taking its toll, He
"I find that going out in the garden isa good way It is the first hospitalization in six months, and watches Hauson, and wonders if bets watching his
to ~iet away from things, or going fishing, or just only an overoight stay for tests, but it evokes painful own future.
visiting with people and talking," be said. "I don't memories of the past and fears for the future. Then he c')mfort.s himself with a wish
want my whole life lobe branded by AIDS." Henningsen telephones Hanson's sister. "I want to be cremated and have my ashes throws
"I told Mary it may be only three or four months in Big Stone Lake. And from there I would flow to
n ni ~ and we have to respond to him accordingly," be said. the Minnesota River, down to the Mississippi River,
"Not treat him as someone who's going to die, but all the way to the Gulf. And I'll hit the Gulf Stream
anson awakes in the Minneapolis accord him the time and attention you want. We and travel the world.
apartment on a recent morning to the can't just say, `See you next week.' It's not a matter "And I told Dick if he'd like lobe cremated, they
sound of his mother's voice. of dealing with certitude anymore, huts great deal could put bin in Lake Minnewaska, and he would
"It wasn't part of any dream," he said. Of uncertainty about where it's going to lead." flow to the (hippewa River and Ihes into the
"Just her voice, crystal clear, calling." Hanson is quiet this evening and seems distracted. Minnesota and the Mississippi and to the Gulf and
The Twins game plays silently on the hospital room around the world. And at some point we would
He has been running a fever for several days, and TV, but relief pitcher Jeff Reardon is losing and merge and we'd be together forever"
suffering headaches. His while blood cell count has
dropped precipitously. IIis chatter, usually cheerful, Hanson pays only passiog interest. se gels up `oi,.u' He stops, perhaps embarrassed
is tinged with fear. during the evening to vomit and occasionally presses "You can't control what happens to people after
his hand to his temple. But he never mentions the they're dead," he said "But even if it doesn'l happen,
nausea, the throbbing headache or the pain from the it's a lovely, consoling thought"
spinal tap.
PAGENO="0275"
]) ickHanson used to talkabont being the
first to surviveAlflS; now ho talks about
survtvtng another week.
Afterayearlong battle with acquired
immune deficiency syndrome, the Glenwood, Minn.,
farmer's health La deterioratiug rapidly.
"We t.alkabeut holding on,"said Bert Henningson,
Hanson's partuer of five years, who also carries the
AIDS virus. "But we have to recognize what may be
reality and prepare ourselves for it."
The funeral arrangements are checked and
rechecked. Visits from family and friends take en
more urgency. Precious moments alone, just Hanson
and Henningson, are guarded and savored. Where
once Hanson threwhtmself into radical political
activism, he now hoards his dwindling strength.
Hanson has taken his battle with AIDS to the
public, eipesing his own dreams and despairs so that
others willfeel less alone. He wants others to learn
from hts less. But the spotlight en Hansen is harsh,
and sometimes catches unwilling players in its glare
- relatives who would rather bear their grief in
private, others who are angered and embarrassed by
their rennectien with him and some who want no
part of him at alL
"This whole illness isa test of humanity, of hew
we treat our fellow human beings,"Hanson said. "ff
we do the leperthing, and put pcepleaway, that's
one judgment. list if we do everything we can to give
comfort and hope and try to finds cure, that's
another judgment."
Chapter Two of Hansen's story is about that test of
humanity.
CH~A1PiER II
G rowtng up, the men weve like twtm. Dick
Hanson is barely a year younger than his
brother Grant. They shared farm chores;
Dtck was a patient milker and had a
gentle way with the animals, while Grant was a
tinkerer who kept the machinery tuned and
responsive.
They double-dated in high school, although the
serializing never seemed to hold much interest for
Dick. They even leeked alike, with the same sandy
hair that tamed lighter in the sun.
"He leeks different new, ef course," Grant Hansen
mid.
At 31, Grant Hansen is sturdy frem yeam of
physical labor. His hair and board are bleached frem
the snmrner, and his face carries a warm, healthy
tan.
Hut Dick Hansen, ~ is wanting away from AIDS.
His frail body isa nslinw wbiis, his skin seems
translucent, his hair and beard have thinned and
brood dark. He beam little resemblance In the
ruddy, fall-faced man who stands side-by-side with
Grant and ether relatives in family photographs.
And appearance isn't all that has changed became
ef AIDS.
Altheegh Grant Hansen remains clese to his
brether and checks regelarly en his cenditien, AIDS
baa crested an eswelceme barrier between them.
t'3
-1
"There's a paranoia about AIDS," Grant Hansen
mid. "Sense people are certain the AIDS virns will
live en a doorknob for days en end or yen'll catch
AIDS fmm mosquitoes. My wile is very fearfelef
the disease."
As a result of that fear, Grant Hansen's five
children, ages 2 to 12, haven't been allowed to spend
time with their Uncle Dick since he became
seriensly ill lust falL Tbe family has visited the farm
only ence in recent mnnths; the children ninyed in
the car while Dick Hansen chatted with tbem
through an open window.
Dick Hansen seldom speaks ef such nt is. He
prefem to ferns on the many kindnesses shown him
by family and friends, and te disnsiss any
mplessantries, blaming them en misinfermation
rather than maliciomness.
Bathe mentiened it recently at an AIDS edncatien
seminar in nearby Starbuck, when semeene in the
audience quoted a Christian radio doctor who mid
AIDS ceold be spread by casual contact
"Became of things like that, I have five nieces and
nephews whe I can't see, who used te leve to came
out to the farm and enjoy being with Bert and me
and doing things with ns," Hansen mid. "For a year
now they haven't been allowed to do that And it's
one of the things I have missed nsnstin the lust year
- getting to know these yonsg people - sod it has
bert me deeply-Iran only hope it will change."
JR anson has become one of Minsnsota's
most visible AIDS patienis, trying to
educate othem about the disease. That
visibility has carried a price.
Sense of his relatives have been hassled by gonsip,
letisr-writem have accnsed him of flaunting his
PAGENO="0276"
hemaaexeality, and a few family members are
furieua with him fer helding the Banana name up te
public acrutiny.
Bet, en the whale, Glenweed and Minnesata are
paaaing Hasaan'a testof humanity.
"Yea have is deal with an many different aspects
ef life when yeu're dealief with this, yea're heund te
nan inte aeme resistanceer ignerance," Hamen mid.
"There aresimple-minded peeple, and I dent hether
te waste my time with them. Bat by and large,
peeple are caring and giving and cempassiasate if
given a chance."
Hansen says he expected ne less, altheegh he and
Heaaiegses knew they risked rejectien by making
their siteatien peblic. They have been featered in
aewa sterien and have speken at AIDS edecatien
ferums access the aisle and at the Mianeseta
Legialature.
"Our friends tald as we were crazy, that we'd be
lynched and branded by the hysterics," Hansen mid.
"Bat we had in balance that aft with what we see as
ear part atit, what I like ta think in the trath."
The alan that came ta him third-hand are mere
than attset by the tavern he receives directly.
Re and Reaaiagsaa recently received a $50 check
tram strangers - twa claseted gay men tram
Minneapalis wha heard abaut them and wanted ta
* help. Otherstrangers have neat smaller amaants -
$5 ar $10 - ar invaluable wards at eacearagemeat.
A triead tram the Gleawaad area called Reaaingsaa
last week ta atter her savings it they aeeded it.
* Neighbors sametimes maw the lawn, and ethers
step by in leave teed in the freezer. Pearl Brasvick,
Hanaaa's aeighbar aad gedmather, brings rhubarb
pia as the weckeads and hamemada daaghaats like
these Hansen's mather made.
Brasvick, a childless 73-year-old widaw, aim neat
Baasaa a aatelast winter thanking him tar escartiag
her ta cammuaiaa at Chippewa Falls Latheraa
Church, Area residents had jast received the sews
that Hanaaa had AIDS.
"I dent knew that mach abaut AIDS," she said.
"Aad I dent really apprave at hamasexuality. I dent
knew it they're barn this way and they can't taactiaa
any ether way.
"Bat we all da things we shsulda't and we can't
judge eachather."
Several lacal ministers have risked the wrath at
their cangregatiass by supparting Hansen. The Hey.
Wayne Meming at Immasueland ladherred
Lutheran churches in Starback urged peaple at as
AIDS seminar ta "take a stand and see these peaple
as children at Ged and be with them is cammasity."
And the Rev. Marlin Jahasan at Trinity Latheras
Church in Cyrus thanked Hansen and llessiagsaa tar
sharing their stary.
"Whether yea agree ar disagree ar apprave ar
disapprave is irrelevant," Jahssas mid. "This is such
a big prablem, yes can't ga running away aft inta the
beandecks as it it didn't exist. H Gad can wark gaad
nut at evil, then we are being blessed by these twa
tellaws because they are an willing ta be vecal abeat
it."
Hansen cherishes such cammenis, little signs that
peaple are listening and learning.
"I am an praud at this rural cammusity," be said.
"I think in the big cities it's very easy ta get last in
the shuffle and impersasal aspect at the thing. But in
the rural area, if yau'va given ta tbe cammanity all
year life as I have, there's a level at decency. It a
tamer keis sick arhis barn burns dawn, the
neighbers get ingether and bring teed. There's a time
ta came tagether, even if yea dent like tha parses,
an matter what the differences.
"Nat a let at peeple ssderstasd er agree with my
lifestyle, but they understand that sense at cnmisg
tagether and that sense atcemmusity. That, tar me,
makes life werth living."
`Al lien Hansen, 69, drives nut ta the
tarmhame nsa recent sight ta visif his
sea. They talk at the usual things - the
family, the tailing farm ecesamy, their
mutual dream at someday seeing Jesse Jacksas is
the White Reuse.
But as he prepares ta leave, Alien Hansen tells a
strange stary, abeut as age gase by when his awn
father was dying ef inaperable cancer, and abesta
faith healer wha came In taws and called span Gad,
and hew dacters later saved his father. And abeut a
time when Allen Hansen hisseR was sick, stricken
wsth gallstases, and the faith healer again called
apes Gad, and the stases passed and be finally was
treed at pain.
Allen Hansen steps his stery and lanka at bin sea,
lying still as death as the cauch.
"I just knew it I casid tind samesse like that," he
said, "they maid help the decters and take away this
illness at years."
Dick Banana stands up thes, mustering a strength
he hasn't felt tar days, and clasps his tather's hand in
beth at his. They stay that way tar a lnsg, awkward
memest - twn praud Narwegias tarmers wha
seldam shared a handshake Is all the years they
shared a life.
Betere letting gnat his hand, Dick Basses tella his
tather hew gned it is in see him, and haw much hn
appreciaim his cancers.
n n a
if t was the timt time Alles Basses had spokes
~ with his sea, eves ebliquely, abeut AIDS.
4 "We sever discussed it," the elder Basses
-s-- said. "I can't explain why. . . . I dent believe is
this crying and everything. Yea get in take the gnnd
with the had in life."
Be sita this evening is the living ream at a safest
rambler near dawatewn Gleawand, where he maved
after lesing much at the tamily's cestury-eld tars ta
tareclesare asd selling the rest ta his anus in as
attempt in salvage the hemesimd.
Relives there with twa at his five anus, Lelasd and
Tam, and with Leland's wite and tees-age daughter.
Alles Banana's esly daughter, Mary Banana-
Jessiges, has walked nver tram her nearby
apartusest, asd sea Grast ataps byes his bicycle.
Allen Banana's eldest sea, Jabs, lives with his tamily
in Brnntes, name 25 miles away.
it is an uscamfertable evesisg tar Allen Banana.
Be seems pleased by the cumpany, but traubled by
ND
-q
ND
PAGENO="0277"
the conversation. He says he is confused ahout the "And! can't help but think of the fun Dickie and! him for bringing his suffering - and its
strange and frightening disease that has attacked had fishing on this lake. We caught some fish there, I accompanying stigma - home.
Dick, his third child, and that has fractured his tell you .. . Dickie and I haven't fished together for a Dick Hanson is painfully aware of the family's
family, couple 37ears flOW." turmoil, hut if he has criticisms or conflicts, he
Allen Hanson says he never thoughtmuch about He talks of the time Jesse Jackson visited keeps them to himself.
his son being gay, that it didn't really matter. Nor Glenwood and drank some of his wife's good coffee, "ilut I can't shelter people from reality," he said.
doeo he mind that Dick Hanson has taken his and the time he rode with the WCCO-TV helicopter `Esen the people you love the most, sometimes you
homosexuality and his fight with AlDSpublic. None to cover a story is the area. He brings out his have to hurt them. I have to do what I think is right."
of the townsfolk have said anything to him about it daughter's wedding picture and many of the awards Tom Hanson, 2!, is the youngest of Dick Hanson's
and, if they do, he's used to controversy, he won asa young farmer - anything to keep the broilers, a big, brusque man who family members
conversation on safe, pleasant terrain. say is prone to outbursts of rage. He lives is his
As one of the first farmers in the area to try
contour plowing, be was ridiculed by traditionalists But the anguish that has torn his family apart is father's house en town, having sold his dairy herd as
who "prohably thought I'd been drinking." As an not tobe mended by nostalgia. Allen Hanson's part of a government buy-out. He still grows crops
early leader of the radical National Farmers memories are lost beneath the squabbling voices of on 90 acres of the family's farmstead.
Organization, he alienated neighbors who belonged his children - voices of grief, anger and resentment. "Dickie helped me get the farm, the one thing I've
to the conservative Farm Bureau. "You can't understand what this in doing to us ass always wanted," he said. "It's just like a twist in my
But this issue in different, beyond Allen Hanson's family," Tom Hanson said. "It split us, big time." stomach. It hurts because be helped me so much. But
understanding or controL "I'm sitting here thinking The children - Dick Hanson's four brothers and jnsl because somebody does something good...
of what the heck I done wrong," he said. "The last one sister - share their stories reluctantly. Evory day something happens and! get madder and
year Ilost everything I got... the farm, my Wife, Each has been touched by AIDS in varying degrees madder and madder."
everything." and ways, depending on their ties to their brother. Tom Hanson is angry at Dick Hanson for making
He doesn't mention Dick directly in the litany of Their positions polarized after hanson's story was news of such a shameful disease, at his sister, Mary,
loss. But be spreads the family photo albums on his aired on Alexandria television is April and, more for siding with Dick, at his brother Grant because
lap, pointing out the prouder times, the times that recenily, was covered by Twin Cities newspapers "he's not man enough' to say that homosexuality n
made more sense. Rather than talk about the son and TV stations. Between Hanson's avid crusade for wrong, at a local minister for refusing to denounce
who is gay and dying of AIDS, be talks about the son AIDS educatiun and the fisbbewl existence of small- homosexuality from the pulpit, at the media for
who was, like him, a promising farmer and avid town living, they are robbed of the luxury of private eriloiting his family.
fisherman . emotions. "I feel Dickie is helping the public by talking
"Those pictures is there, years ago, be was built So they talk, some out of compassion for other about this," he said. "But he could have done it
real good," he said. "He was strong. Hecould handle families visited by AIDS, some out of a simple desire without bringing his name into it or his picture or the
those hales like a good, healthy person, and he bad to support their brother, some out of a need to to.vn. This is not fair what he's doing to the family.
good arms on him. distance themselves from him, some out of sager at
PAGENO="0278"
* . It's not eaay heing single trying to go throsgh
thia, having girla come op and say, `lIis brother'a gay
and ho has AIDS. Is ho gay, too?'
"Atlesstl'm polite osoogh to call them `gaya.'
And I still respected Dickie as my brother for years
after I foond ost he waa that way. I've alwayo been
nim to Dichie. When he came oot of the hospital, he
said he'd like to go ice fishing. So I moved the ice months where I hadn't adjosted to Morn's death, I
home closer to shore and drilled some holes for him almost felt angry at Dick for having AIDS. Ijost lest
and I tried to be nice. And in retorn, the favor I get Mom sod now the nest most important person in the
back is becomes on TV withoot consolting all the world may leave me, too. I think Grants honing
family, with so consideration what it'd be like ins inside jsat like lam right now. Yes start grieving
small town. Ho neverstopped to think of the before somebedy's gone."
innocent people who woold be soffering for his Grant Hanson ins qoiet man who observes the rest
glory." of the family's emotion withoot comment, refosiog
Ho is cot short by his sister. The two haven't to be drown into the fray. "At this poiot in time,
spoken for weeks, their relationship strained by her everybody's got their mind pretty well set," be said.
steadfast loyalty to Dick. "Being mad doesn't change anything."
"Can I ask yes one qoestien?" Mary Hanson. Grant, a mechanic sods veteran of the U.S. Navy
Jenniges is near tears, her voicelow sod controlled. Seatsees, is rostioely tested for AIDS twice a year
"Mayo yos theaght abest what life will be like when he given blood sod resda everything he can
withoat Dick? What will yea complain abeot when abest the disease. AIDS is his concern, be says, not
he's gone?" people's sexoal preferences.
"If there's trsly a body chemistry so that there's
She is 32, has a degree in psychology from St. serial desire is Dick for another man eqasl to mioe
Clood State University and works ass social service for a woman, then Icon asderstand that," he said.
director at a Glenwood sorning borne. She lived st
Dick Hsosoo's farm for a time before she was Grsst Hanson is carefal sot to ssy too moch; he
married, sod later she and her himbasd were wasis to protect his own family's privscy as msch as
freqoest visitors with their lively dasghter, sow 2. possible. Bet be sckoowledges that his sffectios for
Dick Hsmes is at odds with his wife's fesr of AIDS,
The baby no longer goes to the farm for fesr she'll sod their five children ore cssgbt is the middle.
pass some childhood illness onto her smile. Hsosoo. "My desire woold be that between what they hear
Jooniges often cooks for her brother, making meals at borne sod what they hear from the hygiene typos
from their mother's recipes - glorified rice sod at school, they'll mske wise choices," he mid. "It
costard and other bland foods that Basses can reacbes a point where yes let go of themes the
bicycle, and it reaches a point where yes can't
"An a roaslt of my sopporting Dick I've bees control everything they do. Yes jnst hope they'll
shoosed by some of the family," abe mid. "I carry so what yes've tried to teach them.
probably wosld have felt more comfortable if he had "And yes pray for the people with AIDS They say
sot bees poblic, became I'm mores private person. there is so core, that the likelihood eta core is this
I can't my I don't worry abest what people think, centory is nest to nil, so yes jnst pray for time."
becaaae I do. Bst I'm prosd thatDick is my brother Lolsod Hansen, the fosrth son, is 35 and
and has the cosrage to stand o~s and do what he does. soemployod. His wife works as a medical secretary
"In the family, I was the first to know. I west sod they are active too Lotheras chsrch is Sooberg.
thrssgh a mesroing period when be told me. I cricd He says be isa recovering alcoholic; if be can
and cried sod cried. I figared that was the worst overcome his desire for alcehsl, he believes his
thing that cosld ever happen in me. Thes three brotber coo overcome his desire for bemosessal
weeks later my mom died. relations.
"And for awhile, there were probably a cosple of "Yos leek at where the gays were marching is the
ND
a
streeis, and right is the Bible it says yos'll die sod
year blood will be open yes," he mid. "And AIDS is
oow in the blood. God will take that tsr jnst selesg.
He's still is control and now they're dying sod
there's sets damn thing we can do abest it.
"It I was given a 95 percent chance of dying, and
I'm dymg from a sin that I committed, sod God gave
me soother chance to live, I'd be hollering at the top
of my longs that this is wrong. Bat that's net what he
did. God didn't give him a second chance so be ceold
splatier Ma same acrom the paper.
"I west down to my chsrch and the first two
people I met mid, `Is Dick Hanson year brother?'
And I walkod away. Eseogh is enoagh."
John Hanson, 43, is the oldest sod, ho mys "the
mediator between the whole bosch." Became he
lives in another town, be is less entangled is family
polities. He isa part*time farmer who bays bay sod
straw from area farmers and basis it to dairy
operations and to the race track to Shakopee. He
sees Dick Hansen every few weeks when he brings
his two tees~age sons to the farm to do chores.
"I feel sorry for him. He seems tqbe a fairly geed
person. He's always bees real nice to my family.
"Bat I wish they jnstwosldn't have so macb
pablicity. We got kida to school sod there's always
some who pick so them, sod this is as excnse. Dews
in the Cities, there's this gay bostoess going so sod
they don't think tee moch of it. Bet op herein the
small cemmositim, it becomes a big deal.
"There are stew who ask, `Are yes related to that
gay op so Gleoweed?' My sons tell them we're set
related."
F"fl'~'i here is talk. Is stows like Gleowood,
~J popalaties 2,5t0, there is besod to be.
~ Moch of the talk is romor, sod
.Lk. oofoaoded, based so tears abeot AIDS and
how it is spread.
Like the time Mary Hanseo.Jeooiges was chatting
with a sarsing home otticial trom a setghbeniog
cemty. He meotiesod there was so AIDS patient is
PAGENO="0279"
I' \ \
maaka when treating hiun - something that seldom "And I werked thrnugh that, and the way I came
Pope County whn died last winter. He was speaking occurs in Twin Citim hospitals except when doctors nnt ef it was Fm not going inlet that fear prevent
of Dick Hanson. nr nurses are drawing blood, me from miniatoring to Dick."
Or the time Hanson-Jennigm was asked by a "People may have been a little skittish at first, hot The next time Listug was called to Hanson's
colleague if, became of her brother, she had been no one refused to treat him," said Sharon Larson, the bedside, he made a point of taking the dying mann
tested for AIDS. Flabbergasted, she didn't amwer. hospital's directurof nursing hand
Hot when a second person asked her the some
question, she was ready. Hanson's family dentint cleared hin calendar of Since then, the minister baa attended church-
"No, I haven't," she said. "I don't have sex with patienin to accommedate Hanson'n need for dental uponsored seminars abeut AIDS and homosexuality,
work one day last year - and to avoid any panic trying tolearn an much an he can so he can guide bin
my brother or share needles with him." among otber dienin. He continues to cheek on congregation in their response to AIDS and ito
But it in mostly just talk. Hanson's health, and has offered to work Saturdays, victims. He ban preached abeut AIDS from the
"Dick's problem hasn't been a big community if necessary, to treat Hanson. But be asked that bin pulpit, encouraging compassion and acceptance.
issue," said John Stone, owner andeditor of the local eame not be published became be fears be will lose "To me, this in a ministry inane and it doesn't
weekly newspaper, the Pope County Tribune. There business if townspeople know be in treating an AIDS mean that I appreve of bin wbulelifestyle," Lintug
has been no coverage of Hanson's illneus or bin patient. naid. "The focus in on ministering to Dick, who has
public speeches in the Tribune. Local health officials capitalized on the curiosity ,en~"
"Dick has not been a real active member of this uurroanding Hanson by organizing AIDS education For these in the congregation who migbt be
community for many, many years, and alot of seminars in Glenwood and neigbbering Starbuck that discomfitted by Handon's homosexuality and by the
people have no idea who he is," Stone said. "I'm not drew, combined, abeut 250 people. Hamon and publicity beta receiving, the pastor offers same
sure people anderstand a person like him, who puis Henningsen were invited to tell tbeir stories, biblical wisdom, specificaliy, from the Book of
Sues ahead of bin own persenslisfe. He's a crusader At the Glenwuod seminar, a Baptist minister Matthew.
of sorts." raised biblical objections to homosexuality, but was "Matthew 7 said `Judge not that you will not be
"The community interest in zip," agreed Gary quieted by a Catholic priest wbo turned the judged,' "he mid. "And in Matthew 9 and 11), Jesus
Weuscblag, principal of Glenwood High School. conversation back to the topic - AIDS. wan eating with sinners. He takes the risk of
"Most people feel be's just one of tbose weird people Some members of Barsness Lutheran Church, the reaching out to people, oven though thu Pbarinees
and they're not going to deal with it It'alike any tiny cuantry church Hanson has attended since birth, are worried abeut their Sage.
ether Sue.. . a few get right in the middle of ii and were concerned abeot sharing communion wino with "So if someone demanded that Dick not receive
the rest stay home and mow tbeirlawm and goon bisms. With Hansen's consent, the Rev. Carl Lintug corsmunisn or net be sHowed in church, I would any,
abeut their lives." prsvided Hanson with a dinpesablo plasfic cup. Since `Do you want me to abandon him? We're all sinners;
Wenscblag speko to a group of junior high school then, Hanson has boon welcomed warmly at the the rest of us need grace, too.'
studenta abeut AIDS in April after Hamon's niece, a church, and has boon asked to sing a solo when hots Lintug's approach in at edds with the Rev. Merrill
seventb-grader, left school for halls day when she feeling weli enough. Olson, pastor of the First BaptistCburcb in
was teased abeut him. "Herein someone who was baptined in the chureb Glonwuod.
"Kids were tossing her that she bad AIDS and that and grew op in the church and was confirmed in the
her anclo wan a sexual pervert and things like that, church," Listug said. "We're not going to turn our "According to the Bible, homosexuality m wrong,
ho said. "The focus was more on the sexuality of it backs on him now and have nothing to do with him an abemination ante the Lard," Olsen said. "So a
who in homosexual and has AIDS ban to
than en AIDS. because ho's tbomosexual and ban AIDS. There's a realize the spiritual consequences of it, meaning they
"So I told them to think of it from their history there. have to repent of it
perspective - maybe you have an uncle, or brother "So many churches and pastors override that
want tbom to be. And I tried to clarify the Sue. She Baroness Lutheran Church fur 11 years and wbst they've dune.' But if we my we love them and
or someone who isn't exactly the person you might astor Listug has boon the minister of wbolo Sue. They any, `Wo'li love them no matter
has an uncle who's gay, that's a fact And be has bus come to know the Hansen family woli - accept them in spite of what they're doing, that's
AIDS; that's a fact And when you go into the ninth burying, baptining and marrying many of totally wrung."
grade, boll be dead. That seands pretty bretal, but them. His parsonage injust down the gravel road Olson says Hansen would be wolcomo to worship
that's tbo way it is and we need to confront that" from Dick Hanson's farm. Hansen used to teach in his church, but would nut be sHowed to receive
Hanson's presence has forced etbor townspeople to Sanday school at the church, and Lintug wims a kind cumiuiuniun antilbe repented of the sin of
confront AIDS, too. He has boon admitted without listener when Hansen struggled with his decision to bommaxu~~.
question at Glonwood's Glacial Ridge Hospital, be a conscientious objector to tbo Vietnam War. Olson has purchased spsce.in the Pope Ceanty
although the moelical staff were gowns, gloves and So when Mamas was first hospitalized with AIDS Tribano to make his peint, and speko out against
last year, Listug paid a requisite visit Hauson's homosexuality at the AIDS seminar in
"When I left thu hospital, I realised I hadn't Glenwoud. Ho ebjecta to the promotion of condoms
shaken bin band," humid. Listug'n reluctance to and safe sex in the war agaimt AIDS, saying it is
tauch Hanson furred him to face his own fears abeut "treating thesis" rather than stopping it
AIDS.
PAGENO="0280"
"As long as hehavior doesn't change, we'll have
AIDS and premaritalsex and homoaexuality and all
kinds of debauchery and every immoral thing you
can think of," Olson mid.
Listug is aware of Olson's comments, and those of
his other critics, and of the moral dilemma posed by
AIDS.
Bat he again turm to Matthew, this time
paraphrased on his favorite poster. It shows a
starving child in dirty, tattered clothing, and carries
the caption: "I was hungry and you debated the
morality of my appearance."
"We can get into an academic thing of debating
the morality of the issue instead of seeing the human
bemg before us," Listug said.
0 D 0
y he lush vegetable garden is overgrown and
ui ended. Weeds poke throsgh the thick
straw mulch. The spisach and lettuce long
..LL ago flowered and turned bitter, before
Henningsos bad a chance to harvest them. The other
crops are ripening quickly under the humid summer
sun - fat cabbages, gleaming white cauliflower and
crisp broccoli, juicy peas and sweet strawberries.
The raspberries are almost dose for the season, and
the tomatoes will redden seen.
"I found with the garden I don't have time to witness.
process it this year," Heuningso'i said. "So I'm giving But Hanson and Henningson stayed home. "It
it away, all of it. Alice and Jobs were here last would just be too hard to pull away from people and
Sunday and filled up their buckets with raspberries say goodbye," Hanson said. His melancholy is
and I gave some cauliflower and broccoli to Mary." softened some by two red roses, given him that
He sits on the crumbled concrete steep of the old morning by Henniugson to celebrate their years
farmhouse, looking at the garden that has bees his together. Hanson places them nearby so they catch
pride and joy for the five years he has lived here his eye whenever he awakes from his frequent naps.
with Hanson. Last summer, after Hanson fell ill, It is little things that tax him now. He suffered
they named it the Hope Garden and look to itas a severe and unexplained headaches in early June.
symbelof Igauson's stuhborn will to surv:ve. Doctors tried a host of pain-relieving medicines, but
"I find I just love to leek at it," Henningson said. they only caused nausea and a dangerous loss of
"I'll have to tell Dick there's a scarlet gladiola on the weight. They finally settled on methadone
way. He got those for his birthday. Two people gave treatments and the headaches are less painful, hut
him bags of gladiola bulbs and two people gave him Hanson still cannot digest solid food.
begonias." Two weeks ago, an abscessed tooth had lobe
Hanson is asleep inside, on the conch in the front removed. The Novacaine didn't take effect, hot oral
room. It is cool there, and blessedly quiet after noise surgeons cut through the jawbone and pulled the
and smells of the Twin Cities, where Henningson teeth any',vay, fearing that Hanson's weakened
works during the week while Hanson undergoes immune system would not he able to fight the
medical treatment. infection by itself. Hcnningson left the building
It is Hanson's first visit to the farm in almost a rather than listen to Hanson's screams. Hansen
month. He was hospitalized at Hennepin County merely said: "It was the most unpleasant thing I've
Medical Center three times in June, for 13 days. dealt with ins year-and-a-half with AIDS."
The garden has become a lonury for him, as have But Dick Hanson remains a fighter, struggling to
visits from friends and his beloved Minnesota Twins maintain his weight - which has again dropped
games. Watching the TV makes him dizzy. And he's below 120 - on a diet of Jell-O, Carnation Instant
been so exhausted he chose nulls attend an annual Breakfast and a chocolate-flavored protein drink. He
Fourth of July party at the nearby lake home of still cherishes the quiet and fresh air of the farm,
Alice Tripp, a longtime friend and fellow political and watches the news each night with the avid
activist, interest of a lifelong political junkie. And he counts
his small victories, like making it upstairs by
Dozens of friends would be there - compatriots himself to shower, or spending a few minutes on the
who stood with him to try to block construction of
the West Central power line, who campaigned with sleep looking at the garden.
him for liberal Democratic candidates and who were 0 1
The party would have had special meaning this months," Hanson said. "The doctors gave
arrested with him in farroi foreclosure protests. `m really thankful I've had the last six
year: It marked the fifth anniversary of the night upon me six months ago and I was isa
Hanson and Henningson exchanged private vows of very low physical condition. So I'm
commitment to each other, asking Gulls be their really thankful for all the things I've been ahle lode,
PAGENO="0281"
ThEE FI[NLkL CFIL&FR
Dick Hanson died Saturday, July 25, at 5:30
am. Farmer's time, when the night holds
tight tea last few moments of quiet
beforesurrendering to the bustle of the
day.
Back home in rural Glenwood, Mtnn., folks were
finishing morning ban chorm before heading ~utto
the fields for the early wheat harvest. Members of
the Pope County DFL Party were netting up giant
barbecue grills in Barsness Park, preparing for the
Waterama celebrctisn at Lake Minnewaska.
In the 37yeam Hanson lived on his family's farm
south of Glenwoed, he had seldom missed the
harvest or the lakeside celebration. As the longtime
chairman of the county DF4 it always had been hm
job torus the hotdog beoth.
But teday he was in a hospital hedin downtown
Minneapolis with the blinds of the orange-walled
room drawn against the rising sun. Doctors saida
seizure the day beforelefthim ma ware of his
surroundings, beyond pain and - finally - beyond
struggling.
Yet those clmest to him swore he could hear them,
and knew what was happening, and knew it was
time.
"Three times during the course of the night ho
brought his hands together and his lips would move,
and you knew he was praying. Ican't help but think
he ~as shutting himself down,"said Roy Schimd4 a
Minnesota AIDS Project official and longtime friend
who stayed with Hanson that last night.
Hanson died holding the hands of the two people
most dear to him - his sister, Mary Hanson-
Jennigm, and his partner of five years, Bert
Henoingson.
"Amazing Gram" was pisyingnofllyon a tape
machine in the comer of the room. It was hanson's
a!! the up aking engagements, and talkiug at the
Cspits!. Maybe tbis is tbe purpose, maybe! was
given this eutra time in December so ! csu!i inspire
tbe Legia!ature and the pub!ic through the media.
"The !ast csup!o of days in tbe hospita!, and then
here at bome, I seem to bave sensed spirits iu the
room, like people around me. Thu presence has been
so real when! open my eyes up! eupect to see them,
and posaib!y!., seethe vague framework of
mmesne.
"It ueerns they were there to comturt me aud
neems rea!natnra! with the envirenment. Mum was
one ef them, I know. The others! don't recognine.
But! never knew my grandmothers. They died
before! was hem. So there are peop!e in the tami!y
tree who wou!d he concerned who! don't knuw.
"!t'u been ncary in the past when !`ve fe!t the
spirits. But this time it was a good fm!ing. Encept
maybe it means the time is c!oser for me to!eave
this wor!d, and that a!wayo brings md team, to think
of missing my friends and Bert and my tami!y. Bnt!
guess it's kind of nice to know there is some kind of
warning or signa!, too, suit there's something! wast
to my or ds before! leave. . . !ike te!!ing Bert how
much! love him,
"Bert and! had a ta!k ant night. He kind of
prodded me!ike he does when he knows! need to
talc. We ta!ked abent the time !eft, and he probed
my wishes for a service, it it won!d be umn. He
wanted to know it! had any changes in my mind for
the p!om we had ta!ked abent esr!ier,"
Betornato Henninguoa then, trying to remember.
"By the way, what did! say?"
"You !ett imp tome," Henninguon answered.
Hanson shakes his head. "! !eft it apis yon," he
said. "Typical me. . . when there are tough choices
to make, !esve ii ep to Bert."
Then, Hanson !angha, a onrprising!y desp and
hes!thy !angh.
favorite hymn, the one he had anog over hin mother's
grave barely ayear ago.
This is thefinal cfs,apterof Hansonkstery. After
ha vingliveda year longer than mrnot AIDS victims,
he grew weary of fighting for his lifeand was willing
- if not eager - for it to end. After his death, he
was cremated and returned to his childhood church
fora memorinl service that was vintage Hanson -
traditionally religious bat politically radieal and,
inevitably, controversial.
Henningson inleft behind on the farm with a
legacy of love - and death. Fornowhei too, inslck
suffering early symptoms of acquired immune
deficiency syndrome. No sooner will he finish
grieving for Hanson than he mest begin grieving for
himself.
n n n
Dick Hanson spent the teat weekend of his
life at the tarm where he grew up. !i is
there he began his !aai goodbyes.
Grani Hanson eame to the farmhouse
for the timt time is months. Of the tour Hanson
brothers, he was c!oaesi to Dick is age, temperament
and alt ectinn.
Grant was alone. His wife never had gotten over
her overwhelming tear of All)S and had forbidden
Grant any c!ose contact with Dick, worried he would
carry the vices home to their tive chi!dren.
"! think Grant wanted very moch to tonch me and
hag me," Hanson mid. "But he mid he moldo'i lie
abeni un Joyce and she'd jest be no upset it she
ihoughi he got too c!ese. So he jest ml across the
room from me.
-1
PAGENO="0282"
"I just felt like I was saying my goodbyes to each
and every one of them. So even though I may never
make it back, I felt I had a chance to be with them in
a very special way."
"But we had a very deep talk. He said if there was Hanson was alienated from his three other
any of the four brothers he could have farmed with, brothers in early spring, when an Alexandria
It was me, I guess I've always known that, but it was television station did a series of stories about him.
nice to hear him say that. And it was just something The brothers were angered and embarrassed by
special that he came out and came into the house for Hanson's decision to tell his story publicly, and
the first time." accused him of bringing shame on the family.
Allen Hanson made two visits to the farm that But Leland Hanson, a conservative Christian who
weekend to see his son. They never spoke directly of is younger than hanson by a year, telephoned after
death, hearing his brother had bees admitted to the
"Dad has been coming out every Friday night ~ci hospital. Hanson's oldest brother, John, had stopped
his own and has sat for along time and has not at the farm a few weeks earlier for a short visit.
wanted to leave," Hanson said. "But this last time Hanson never heard from Tom, his youngest
seemed like a special time for him. He doesn't want brother and longtime fishing companion.
to talk about me dying. I guess I haven't found the
right words to talk to him about the situation. I was - n 0 11
after a vicious bout of vomiting. He
just hoping somehow he could see I was at peace. anson entered the hospital two days inter
"My sister Mary came out with him on Sunday. It
was hard for her to see me use the cane and have predicted it was his last hospitalization,
and he seemed almost anxious to die. His
trouble walking. I guess I stumbled a few times, and cha~acteristic cheerfulness was gone. He still talked
when I went outside Bert bad to hold my hand. She occasionally of gaining weight and living several
just bad to leave the room and go outside and cry. It
was just too bard for her. Bert talked to her and and mere months, but now the phrases of hope rang
hollow, as if they were expected but not meant.
be han watched me every day, and he said I'm the
same person. The inner person of me is still there, "The time is close," he said to friend Roy Schmidt,
and the outer body is something you just have to ~ who pretended not to hear.
rst. It's like people growisg old together, you just "He's pretty much given up," said his physician,
e to accept it. Dr. Margaret Simpson. "Dick han always been an
"So Bert stayed outside with Dad for a while and eternal optimist, and somehow he always bounced
Mary came back in and salon the couch and we just back before. But is the last two months, there's been
had a real deep conversation. Ijust said, `Do you a major turnaround... . Most people Just get tired of
know that I'm at peace? I could go the next hour or feeling this bad. They say, `I don't want to die, butt
the next day and be ready.' I think by the time she don't want to live like this.'"
loft she really believed me.
Yet a core of spunk remained. The sugar-water
dripping into his veins perked him up, "giving me the
opportunity to just gab away a few more clays," he
said.
A stream of visitors crowded to his bedside. He
had to strain to see them through his blurred vision,
or depend en Henningson to identify them. He
comforted them as they cried, clutching their hands
and reminding them each of some special moment or
gesture that had enriched his life.
He insisted on sitting up as often as be could
during the day, and tried to shake himself out of his
morphine doze whenever he had visitors. Hennisgson
teased that Hanson was just testing people "to see
how interesting a conversationalist they are."
Hanson brightened most at the talk of politics. He
scowled at the news that conservative Cardinal John
O'Connor of New York was named to the president's
AIDS task force. He smiled in satisfaction when a
political crony from Glenwood reported she bad
been granted a long-sought audience with a state
legislator after dropping Hanson's name.
A sympathy call from Coy. Rudy Perpich was
cause for quiet pride - and prompt action.
"He praised me for being willing to be public, and
for challenging people to be responsive in a public
way to what we've done," Hanson said. "And he
asked if there was anything he could do to help."
The next day, with Henningson's help, Hanson
fired off a two-page letter to Perpich suggesting
changes instate law to force nursing homes to
accept terminal AIDS patients.
Hanson also remained a keen critic of the news
media, constantly analyzing whether they were
doing an adequate job to increase the public
PAGENO="0283"
U n ii
o the end, Hanson starved to death.
~ Since he became ill in late 1985, the AIDS
~ virus had waged an insidious attack on his
_LL body. His skin broke out in Herpes' rashes. A
related virus ate at his optical nerves, methodically
destroying his eyesight. He frequently ran fevers as
high as 104 degrees, and more frequently lay
huddled under heavy blankets as icy rivulets of
sweat soaked through to the mattress. Sometimes he
had diarrhea, while other times he would go two or
three weeks between bowel movements. His weight
plummeted from 160 to 112.
He fought back with blood transfusions, eye
injections, inhalation therspy, toxic drugs and home-
brewed organic compounds, but his greatest
medicines seemed to be faith and a stubborn will to
survive. He defied the odds last August, and again in
December, when he wan expected to die from
pneumocystis pneumonia, the meet common killer of
Afl)S patients.
While he regained some of his lest weight and
strength from the experimental drug AZT, he also
was boosted by the fresh bounty of his garden and by
home-baked treats from his country neighbors~
He used the time he had left to crusade, traveling
the state, preaching a gospel of hope and acceptance
for AIDS sufferers. For several months, he felt so
good he vowed to be the first to survive the fatal
virus. After a life of championing underdog causes, it
would be his greatest triumph.
Then the nausea returned two months ago, leaving
him unable to digest solid foods and launchings
precipitous weight loss. As his 5-foot-lO frame
shrunk and shriveled, his feet and hands and head
seemed to grow enormous.
He walked with a cane, when he walked at all,
shuffling to negotiate through doorways and around
furniture. He fell once when he was alone, landing on
his back on the bedboard, and was usable to move
for almost an hour.
He had grows suddenly old. He trembled with the
sheer effort of sitting up and with a constant chill
that was impervious to the muggy summer heat. His
face at times looked ancient, the forehead
protruding stop the fleshless skull, the eyes bulging
over pronounced cheekbones.
Yet the anme face could look disarmingly young.
The worry lines that once creased his forehead were
gone and the soft laugh lines were pulled smooth as
his skin stretched tautly over his skull.
The heavy gold-framed glasses no longer fit his
face, edging each day nearer the tip of his nose,
constantly threatening to slip off. His brows eyes
were often cloudy and distant, like a child's lost in a
world of fantasy.
The uncontrolled vomiting started a week before
he died. He had nibbled on a neighbor's moist
zucchini bread, declaring it so tasty he abandoned
his precautionary avoidance of solid foods. When the
retching began that night, nothing would stay down,
not eves medicine.
Three days later, he was rushed to the hospital,
dangerously dehydrated. He weighed 107 pounds, his
skin as dry as parchment and cold to the touch.
He refused a feeding tube and requested a Do Not
Resuscitate order. He tried to decline all medicines,
even painkillers, so death would come more quickly.
Simpson insisted only on keeping him comfortable,
sympathizing with his desire to die.
"She felt it was a terrific period of time I'd had,
and that I had done a lot since December," Hanson
said two days before he died. "She said I shouldn't
feel guilty about not wanting to do every little thing
possible to extend my life."
understanding of AIDS. He pumped Henningsos for
information about federal funding for AIDS
research, laws guaranteeing compassionate
treatmest of patients or medical advances that
might help the next generation of sufferers.
And he kept a healthy hold on his ego. He wan
fascinated to see himself ins follow-up story on the
Alexandria television station, to witness the shocking
change in his looks over the last two years.
He died just before Peeple magazine ran a cover
story about AIDS is America, and before Newsweek
ran its dramatic photo package called "The Face of
AIDS," a haunting panoply of 302 men, women and
children who have died of AIDS in the past year.
Hanson would have been pleased to know his
picture was included.
\`
He lived on crushed ice those last four days. His
partner, Bert Hensingson, or his sister, Mary
Hanson-Jenniges, stayed with him rosnd-the-clock to
opoonfeed him, wash his beard and change his soiled
hospital gowns.
As he neared the end, he struggled against an
increasingly dense fog brought by the morphine he
was given every eight hours.
"It's about all we can give him," Simpson said.
IHI anson suffered a seizure on his third day
in the hospital, while Henningson wan
giving him his morning shower.
It wan part of the hospital ritual - a
shower and shampoo every other day if Hasson was
up to it, abed bath if be was not. It was the only
physical intimacy the two men had left.
In the shower, Henningson chattered at Hanson
about mundane things. He said he had stayed up late
the night before, after leaving the hospital, to watch
the magnificent thunderstorms that brought 100-
year-rains to the city, thunderstorms that Hanson
missed because he was fuzzy with morphine and
because hospital policy required that the shsdes be
drawn in case of shattering glass.
Asd Henningson updated Hanson about the latest
political news - another rituaL As Hanson's
eyesight failed and his headaches worsened, he
relied on Henningson for his daily fix of news from
Washington, D.C., or St. Paul or the Metrodome.
Henningoos was telling him about the Iran-contra*
hearings, about Secretary of State George Shultz's
startling testimony, when the seizure began.
"I was jsst saying, `I'll tell you all about it when
we get you back is bed,'" Henningsos said later that
morning. "And suddenly he started pushing out at
me, very rigid and quite strong. I had to get a nurse
to help me.
"And now there's no more recognition or response.
He maybe able to hear us, but there's no way to
know. But if he is beyond hearing us, he's in effect
been released. Now it's just a matter of the body
going along. There will be no more pain, no
suffering. Oh, I hope so."
PAGENO="0284"
m a a
The doctor said Hanson's organs were still
strong, his farmers heart and lungs
pumping in defiance of the coma-like
trance. He could live as long as two weeks
like that, his eyes open but unblinking, his knees
drawn up, legs twitching and arms tugging toward
his chest, trying to curl up like a baby, his head
cocked oddly to one side.
But others sensed it wasn't so.
Henningson ushered out the last of the day's many
visitors, and drove to his South Minneapolis
apartment for much-needed sleep. He awoke about 3
a.m. and cried and prayed and waited.
Hanson-Jenniges refused to return home to
Glenwood that day and didn't bother with sleep that
night. She sat at her brother's bedside, wearing the
same clothes she had been in for three days, and
watched his sunken chest move shallowly up and
down. She prayed through the night for his death. -
Alice Tripp, Hanson's old friend and political
compatriot from Sedan, had driven to Minneapolis
with Hanson-Jenniges. Tripp was asleep in the guest
room of her daughter's house in suburban
Minneapolis when something woke her about 5 a.m.
She lay awake until daylight, thinking of the young
man who had stood with her on countless picket lines
and motivated her to run for governor in 1978,
quietly convincing her and dozens of other women in
rural Minnesota they could make a difference.
Jane Ireland, a chaplain from Hennepin County
Medical Center, aiso awoke at 4 a.m. She was going
to islephone Hanson's hospital room but, for some
reason, didn't. Her concentration on him was so
intense that later, when the phone did ring, she didn't
hear it.
And back in Glenwood, Pearl Brosvick had trouble
sleeping. She spent a restless night alone in the large
farmhouse, where she had nursed her invalid
husband for more than 20 years before he died, and
where her godson, Dick Hanson, had whiled away
rainy afternoons playing with other farm youngsters
- the only children Brosvick ever had.
Sometime during the darkest hours of the
morning, Hanson's breath grew labored. His sister
asked the nurse to give him a slow measure of
oxygen through the mask -enough to smooth his
breathing but not enough to keep him alive. She pot
some soothing music in the tape machine, just in
case Hanson could hear, and called Henningson.
Henningson took his time returning to the hospital.
He showered and finished his prayers and savored
the quiet time, sensing it was about to end.
He reached Hanson's bedside at 5:20 am. Ten
minutes later, Hanson died.
"I think he waited for me," Henningson said.
a a
a
TT ~` enningson's voice echoed in the vast
jj~J basement vault of the Minnesota
~ Cremation Society in South Minneapolis.
.11. JI. He sat alone with Hanson's shrouded
body, waiting for the cremation to begin.
Hanson always had been the stronger singer, his
clear voice and natural pitch carrying the melody of
folk songs while Henningson followed with a self-
conscious harmony.
But this morning there was no one to hear
Henningson as he sang Hanson's favorite hymns,
"Amazing Grace" and "Swing Low, Sweet Chariot."
And "Joe Hill," the ballad of the martyred union
organizer.
"I've been singing him `Joe Hill' for the last
several weeks because in the song it says, `I never
died, said he,' " Henningson later told the six people
- brought together only by a common friendship
with Hanson - who waited for him in the hushed,
formal parlor upstairs.
Henningson had been uneasy about the cremation.
He faced criticism from some of Hanson's relatives
who preferred a traditional burial. Others had
wanted the body embalmed for a viewing.
But Henningson was determined to honor Hanson's
wishes to be autopsied for study by AIDS researchers
and then to be cremated.
"The ancii~ land the Indians, they all have -
the tradition of the funeral pyre where residual . `i
spirits are released," Henningson said.
"We had a philosophical difficulty with burial,
doing that to the earth, and Dick was an
environmentalist who cared for the earth. . . . And I
didn't want to put Dick in the earth with the AIDS
virus in him. They can drain the blood in embalming,
but the virus is still in the tissues. Burning is a
purifying thing and it kilis the virus."
Henningson had not known what to expect at the
cremation. After months of being a no-nonsense
caretaker for Flanson, he suddenly felt shaken and
unsure. The despair that gripped him in the wake of
Hanson's death took him by surprise. His hands were
icy when he entered the vault, and he said his voice
trembled as he began to sing.
"Then I felt calmer and I put my head down," he
said. "Then my head was pulled up, and I felt my
mouth fall open and I felt warmer than I had been in
days. And I knew the spirit had come into me asil be
was free and he was with me.
"They say the spirit stays around awhile so we can
learn not to be apart But I thought, `I'm going to
have to share you.' Then I just laughed out loud,
because that's the way it always was, I always had to
share my time with Dick. And there are iota of
people now who will want part of his spirit"
I a a
`~y t was already dark when Henningson arrived at
11 the farm the next evening. He was tired, and
1 still had much to do. He had to prepare for
Jj Saturday's memorial service - last-minute
visits with the minister and the florist, and a
thorough cleaning to rid the house of countless
medicine bottles, stained sheets, sweat-soaked bed
cushions and other vestiges of terminal illness.
PAGENO="0285"
But those things would have to wait. Henningson
went straight upstairs to the screened porch that
overlooks the marshes in front of the farmhouse. He
found the old pink candle, set it on the small table by
the middle window and lit it, placing Hanson's Bible
and the urn of ashes next to it. Henningson lay on one
of the metal-frame cots, watched the candle's flame treasures of Hanson's life - a "great bazaar," as
and remembered. Henningson called it.
"We rehabbed the porch in the summer of `84 so They saw his degree from the University of
we could use it," he said later. "The screens had been Minnesota-Morris. Photos of his biggest fish and
tarn out by kids or whatever, so we screened it up proudest garden and of his family at his only sister's
and Dick's mother went to her auctions and gotcots wedding. Ills formal campaign portrait from his run
and stable for 50 cents or something ridiculous, for Congress in 1984. His fishing license and the
"It was dry that summer, not humid. The black rod and reel he tisedto take hundreds of
strawberries were especially good and I found a walleyes out of Lake Minnewaska.
recipe for an old-fashioned biscuit-type of shortcake. His well-thumbed Bible was there, next to a rusty
We would use the porch in the evenings. We'd spend planting trowel and a jar of decorative corn from
all day with the hogs, then go up there and have our one of his harvests. His grubby power-line protest T-
biscuits and strawberries and cream. There were shirt was neatly folded and covered with shards of
good memories up there, green glass and metal - the broken transformers
"That was an election year, and Dick was running and sawed-off bolts from the transmission towers
for Congress. And often what I'd do, when Dick was downed during those protests.
out on the campaign trail, I'd light the pink candle There were a few buttons from his various
and wait for him to come home. It was a nice signal political alliances, although Hanson had donated
for him to see as he drove is." moat of the collection to a DFL fund-raiser. And a
On this night, Henningson again lit the candle. But tattered red bandana he wore around his arm during
his sentimental vigil was brief, cut short by farm foreclosure demonstrations - a symbol of his
oracticality. He fought sleep a while longer, but felt willingness to be arrested.
himself sinking into the thin mattress. The display was crowned by a splendid bouquet of
The last few months of caring for Hanson had gladiolas - flowers that Hanson had grown in the
extracted an ironic price. Stress had activated the garden next to the farmhouse.
AIDS virus, which had lain dormant in Henningson's Friends fingered the trinkets and remembered,
body for so long but now was attacking his strength their laughter tom with tears.
with a vengeful speed.
"We have lest a rare friend, a man of courage and
He blew out the candle, took two sleeping pill5to vision who raised no many of our hopes, ` said Anne
ward off anxiety and set his alarm for 3a.m., when Kanten, assistant commissioner of the Minnesota
he was scheduled to take his next dose of life-
prolonging AZT Agriculture Department, who gave the eulogy at
Hanson's request. "His tenacity frustrated us, and his
Es n courage absolutely scared unto death. The greatest
~ he mourners came a week after the death, tributs we can pay him is to continue the struggle. Leland Hanson came to church with his wife and
~ driving down the dusty prairie road to tiny We have to march and lead and change the syatsma teen-age daughter, but left abruptly before the
Barsnesa Lutheran Church. As they entsred that need changing. That is the legacy Dick Hanson service began. He declined to comment, but family
A.. the stuffy lobby of the white-washed left us." members said he was angered at the presence of a
sanctuary, they passed a table loadedwith the But Hanson's legacy, like his life, was burdened by photsgraphqr.
disapproval and controversy. Some relatives and
neighbors bristled at his public homosexuality and
were disturbed to find reminders of it at the
memorial service.
In the middle of the table in the church lobby lay a
yellowed copy of Equal Times, a Minneapolis-based
gay newspaper that carried a front page story about
Hanson's fight with AIDS. Pinned to the paper was a
small button, black with a pink triangle - the sign
used to identify homosexuals in Nazi Germany and
now a universal symbol of pride for gays and
lesbians.
Conservative church members took exception to
those items, not wanting it to look like they condoned
homosexuality. Others resented the presence of
outsiders - a reporter and photographer who were
chronicling Hanson's death, and a caravan of
mourners from the Minneapolis gay community. And
some still feared contact with the AIDS virus.
"People at the church said there was too much gay
stuff involved in the service," Hennisgson said. "But
that was a very significant part of Dick's life, that
and his struggle in the last year. How can we deny
that?"
The greatest resistance came from within the
Hanson family, a large family - five siblings, three
spouses.and numerous nieces and nephews - that
shrunk when asked to stand together at his death. A
shaky and confused Allen Hanson greeted the
mourners at the service, flanked only by his
daughter, Mary, and son, Grant. Two of the three
pews reserved for the Hanson family remained
largely empty.
PAGENO="0286"
Tom Hanson waited until all the mourners were
seated, then entered church through a side door. He
sat alone in the choir loft, telling one of his brothers
he would not sit ins church filled with homosexuals.
He left before the service ended, refusing to greet
mourners or to join the modest luncheon afterwards
in the church basement.
John Hanson quietly sat in the front of the church
with his two grown daughters. But his wife, Kathy,
and their teen-age sons did not attend. Kathy Hanson
has said she wanted nothing to do with Dick Hanson,
and the boys - who have been teased at school -
have been advised to deny they were related to him.
Grant Hanson's wife, Joyce, stayed home with her
five young children. She called Henningson with
condolences before the service but said she couldn't
overcome her fear of AIDS.
"I really cared for Dickie," she said. "Maybe I
should have gone. Maybe it would be different if it
was just me, but I have to think about the kids."
In contrast, Henningson wan surrounded by family
members. His parents drove over from Ortonville, in
neighboring Big Stone County..A few of his uncles
were there, and his two brothers and their families.
His sister called from Portland, Ore., to say she
would be praying for him during the service.
"This is not a family that will abandon him," Ailys
Henningson said of her son.
Behind the two families, the pews of the simple
church were packed with about 150 mourners -
public officials, anti-establishment radicals, farmers
and homosexuals sitting shoulder.to-shoulder in their
Sunday best.
"There's one thing we all have in common," said
the Rev. Earl Range, a farmer and former state
legislator, who presided over the service in the
absence of Barsness Pastor Carl Listug, who wan on
vacation. "We have all been irritated by Dick at one
time or another.
* "There are times when we wanted to be left alone
and left in peace, but he was always pushing us in
carry on the cause. And he was an irritant to
himself. If you had trouble accepting him, remember
it took almost 10 years for him to accept himself
that he was different, perhaps gay."
State Rep. Glen Anderson, DFL-Bellingham, and
state Sen. Gary DeCramer, DFL-Ghent, were there.
Gov. Rudy Perpich and his wife, Lola, sent a lush
bouquet of pink and white roses for the altar. Other
DFL leaders sent condolences from the party's
central committee meeting in Grand Rapids. There
were representatives from the Minnesota AIDS
Project and the Minnesota Health Department.
But the majority of mourners were women, many
of them well into the second half of their lives, the
same women who Hanson had found most responsive
to his political radicalism and most accepting of his
personal lifestyle.
Ten were selected by Hanson before his death to
serve as honorary pallbearers. They were his
political proteges: Alice Tripp, a sturdy second
mother who stood with him to block construction of
the United Power Association high.voltage
transmission line and ran for governor in 1978;
elegant Mary Stackpool of Glenwood, who made a
bid for the state Senate last year under Hanson's
tuteinge; Lou Anne Kling, a former DFL county
chairwoman from southwestern Minnesota who was
involved in the Groundswell farm movement; and
lively Nancy Barsnesa, who, with Hanson's backing,
returned to college after her children were grown,
graduating with straight As.
"Dick was well aware of the negative social
pressures that discouraged women from seeking
active public roles," Hennlngson said in a formal
thank-you speech to the congregation. "He helped
escort them along the way before he died, and he
asked that these women be his escorts now as he
begins his journey to a long and boundless life."
The other women were even older and less well
(\c
PAGENO="0287"
known, but no less precious to Hanson. They were time of his death, denying our relationship together good number of peopie I just visited with and got to
members of the Martha Circle of the Barsness and trying to shove Dick back in the closet again," know and never had sex with.
Ladies Aid, a group Hanson's mother belonged to, Henningson said. "I think of all those people. They had all those
and a group that, to him, represented respectability The two men met at a political convention in 1982. same emotions, the same need for some warm;
and acceptance. Hanson probably already was infected with the AIDS loving embracing and healthy contact. It was good
While some paid their respects at the service, virus, although there was no way to know for sure -- for me to discover that I could give something I
others worked downstairs in the church kitchen, a test for the virus had not been developed, didn't think was possible, that I wasn't just some
preparing a meal of sandwiches and cakes. The get- Hanson had spent the previous three years freak not attracted by the opposite sex,"
well card Hanson received from the Martha Circle exploring his homosexuality, "coming out and Henningson's sexual history was different, Ills
when he first was diagnosed with AIDS had crashing out," as he called it, making up for 15 years marriage to a childhoed friend had failed, and he had
remained one of his most cherished possessions. of sell-denial. He worked alone on the farm for come to terms with his homosexuality through the
"That card was the first indication that people weeks at a time, then traveled to Minneapolis or San Program in Human Sexuality at the University of
here would not abandon him, but would show him Francisco or New York on political and sexual Minnesota.
true Christian love," Henningson said in his speech. junkets. But gay liaisons had seldom worked for him. lie
"Dick was a strong and courageous man, willing to "I can point to an awful lot of anonymous, unsafe had no tolerance for the fast-lane scene in the bars
challenge authority and fight for justice. But he 5150 sex," Hanson said a few months before his death. and bathhouses. After three unsuccessful
00
was a sensitive soul who did not want to lose his "The likelihood is I got AIDS because of being much involvements, he retreated into school, work and
friends here. I believe the welcome you extended more sexually active. But I don't know that it gains political activism - a route that led him to Hanson,
gave him a great deal of his strength and peace in anything to know. whom be read abeut in a biography of power line
his fight with AIDS." "I have given it slot of thought. You try to go back protesters.
and remember why you did something or not. There The men shared an uncannily similar background,
were social factors. It was just easier to have sex Both were farmboys who never quite felt they
The ugly gossip found its way back to when I west to the Cities for the weekend. Being on belonged, who knew they were different beforethey
Henningson. A fisherman had been the farm was not good for developing long-term even had a word for their homosexuality. Both
overheard at a local coffee shop, relationships. And what would my family think if I became politically involved with the radical
complaining that Lake Minnewaska would brought home someone important to me? Sal put a National Farmers Organization while still in grade
be contaminated with AIDS if Hanson's ashes were big blame, if therein any, on society's pressure that schooL Both were Vietnam War protesters, liberal
placed there. we had to be anonymous and closeted. Democrats and farm activists. Both felt rooted to
For Henningson, it was just the piece of dark news "There were a lot of people from Wisconsin, Iowa, life on the farm.
he needed to trigger his anger and pull him out of ~ the Dakotas doing the same thing. They were
growing despondency. He had spent the previous farmers, businessmen, teachers, priests. We just had But they were temperamental opposites.
week fighting for his right, as Hanson's partner and an awful lot in common, living in an environment Hennisgson's biting wit and quick temper was a
legal executer, to handle Hanson's death. Officials that wasn't acceptable to us being ourselves. Se balance to Hanson's sugary sincerity. Hanson's yen
questioned his authority to make decisions about there was a lot more going on besides sex. Each time for the public limelight allowed Henningson to work
treatment, cremation and the disposal of the ashes, I went is it'd be like a therapy session. I saw each in the background, where he was most comfortable.
insisting on corroboration from a blood relative, individual as someone who was special and I wanted When Hanson was overcome with insecurity and
"There seemed to be great poles emerging at the to get to knows little bit. And there were a pretty
PAGENO="0288"
self-douht~helooke4~jM~~
nudge of confidence. Hanson was the talker,
Henningoon the reader and writer.
Henningson was attracted to Hanson's
vulnarability, a personal passivity with family and
frlond~ that contradicted his public image as a
rabble-rouser.
Throughout his life, Henningson had been a
caretaker - lending his car to friends against his
father's advice, opening a counseling service for
returningVietnam veterans, working as an orderly
in a Twin Cities nursing home.
Later, when Hanson became Hi, it was natural for
Henningson to assume the role of provider -
earning the money that bought the groceries,
laundering the soiled clothes and bedsheets, keeping
a matter-of-fact attitude in the face of certain death,
refusing to let Hanson wallow in depression or self-
pity.
He was the one who said no when Hanson
wouldn't, who reminded Hanson when to take snap
or wear a jacket. Once, when Hanson was patiently
explaining his AIDS crusade to an abusive caller,
Henningson simply unplugged the phone.
"I've always thought our relationship was
preordained," Henningson said. "Dick probably got
the virus in 1980, before we met. If he had to go
through this AIDS bout the last year alone, he
wouldn't have made it. So I think it was preordained.
I would meet him and be there to take care of him.
"But I would lose my life, too, in the process....
Giving up one's own life to allow another to die with
dignity. . . that's the purpose for my life."
Henningson said it's "likely" he caught the AIDS
virus from Hanson. Though the two exchanged
private vows of commitment five years ago, they
agreed they could have outside affairs, a not-
uncommon arrangement among gay couples.
"If it felt right, we have had light safe sex with
others," Hanson said. "I encouraged that as part of a
trusting relationship. I feel even post-AIDS there are
people who need to not be rejected sexually."
Henningson agreed, knowing they had "reserved a
part of our lives that wasn't going to be shared by
others." He and Hanson discussed the risk of AIDS
when they met, but decided their relationship was
worth it.
"I'm half-Danish and, like the Scandinavians,
there's a fatalism there," Henningson said. "If life
dishes you out a lot of bad things, you roll with it
because that'rthe way life is and there's not much
you can do about it. Life's too short to lay guilt and
all the rest of that. Nobody goes out sad asks for
AIDS. Nobody would want something like this. It's
just something that happens and you have to deal
with it."
ri ii n~
p~'ry~~ he diarrhea struck Henningoon in early
U spring. He paid it little mind at first,
1 thinking he had caught a flu bug frem
J~. Hailson's young niece. He had tested
positive ~or the AIDS virus a year earlier, just alter
Hanson first fell ill. But with his background of
limited sexual encounters, Henningoon felt he was at
minimal risk.
"My medical history
Idn'tfi theproflle and
there ~isa Co reason to
believe I'd goon to
develop symptoms," he
said. "So emotionally I
was buffered."
But as the year wore on
and the otrain of carisg
for Hansen became
greater, Hsnningson
couldn't shako the
sickness. He had all the
tell-tale oigns: diarrhea,
night sweats, alternating
chills and fever. His
weight began a oteady
drop, just as Hanson's had
a year earlier.
Henningson isa small
man who consciously kept
his weight just below 130
pounds, fearing middle-
age spread. By late
spring, he was down to
120 and was sowing tucks
is the waistlines of his
pants. By early summer,
he had lost another 5
pounds and was buying
pants in smaller sizes. By
msd-oummer, he weighed.
less than 110 and was
wearing suspenders.
He was diagnosed as
having ARC - AIDS-
related complex -
several months ago, but
initially declined to
discuss his condition
publicly. At the time, he was applying for various
loans to try to save the farm from foreclosure and,
as ho said, "They won't lend money to a dying man."
The farmhouse and surrounding 40-acre wetlands
belong to Hennisgson now, signed over to him by
Hanson a year ago and purchased for $8,000 usder
an agreement with the Federal Land Bank. With
Hanson's impending death and his own deteriorating
health, he realized it was futile to try to keep the
cropland.
Instead, he decided to devote his dwindling energy
to caring for Hanson, and to joining Hanson's
crusade to educate others about AIDS.
"I realised how important it was in the face of this
epidemic to get more public understanding about
what has to be done," Hesningson said. "Maybe not
for me, but for the next generation of AIDS patients
who will be getting sick ins year or so. It's a social
obligation to them."
T[Jr enningson's regrets are few. He had no
I lofty career ambitions, content instead to
1 1. study history and to write philosophy on
Jj~ Jj his home computer. He never questioned
his commitment to Hanson, despite its price. From
00
PAGENO="0289"
the day they met,
Henningson knew he
wanted to spend the rest
of his life with Hanson.
Now he wants to spend
what is left reflecting on
what their time together
meant.
"It was like growing old
together," he said. "The
whole process was just
speeded up for us. A
couple usually has a
lifetime to grow old
together. We didn't have
that time. We had to
compensate for things we
couldn't do anymore.
"There was no sex the
last month. But that's like
growing old, too. My
parents have a plaque in
their kitchen: `Lovin' don't
last, but good cookin' do.'
Relationships change. You
move past the passion of
the first year and mellow
out. You have to or you'll
bum yourself out.
"We had stopped kissing
on the lips. I didn't want
to pass anything onto
him. But that Tuesday in
the hospital, when it
looked like it would be
terminal and it would go
real fast, we just reached
for each other. So then
every time I'd be gone and
come back into the
room, I would kiss him.
"I realized what! missed was that close physical
sharing we had. I guess I became more of smother.
comforter. I was so busy. I hadn't realized I missed
it. So if there's any mourning I do - although I feel
his spirit with me - it's a deferred realization of
what we had been missing the last few months. As
much as the homophobes try, they can't deny what
we have is also a physical relationship."
Henningson has been left pale and tired by the last
year. A disturbing rash marred his cheek - acne
from the stress or, possibly, something more
ominous, Herpes or Kaposi's sarcoma, a cancer that
attacks 40 percent of AIDS patients.
Yet a heaviness has lifted, leaving him with a
sense of relief.
"I've seen spouses after a death, and they have a
serenity about them," he said. "It's like they've
accepted the death and still feel close to the spouse.
They feel no compulsion to find anyone else. They
still have a complete life in terms of feeling
comforted by the closeness of the spirit.
"I've been a hermit all my life. Even ass child I
was reclusive. The calling! had to live with Dick has
been good. But if mow go back to being alone, it's
not foreign to me. I spent most of my life that way."
He has pulled out his favorite books - acid essays
by H.L. Mencken and "Mountain Dialogues" by
Frank Waters - and has lined up agriculture
research projects that will allow him to work at
home. He was accepted into an experimental AZT
project at the University of Minnesota Hospital and
Clinic and will continue to seek treatment in
Minneapolis, where an acquaintance in letting him
live rent-free.
He will spend as much time as possible at the
farm. Hanson's friends have become his, and can be
counted on for companionship. Hanson's brother-in-
law, Doug Jenniges, has offered to do the heavy
labor, mowing the lawn through fall and plowing the
driveway if Henningson tries to keep the farmhouse
open through the winter.
Thoughts of his own illness, of Hanson's history
repeating itself through him, don't greatly trouble
him now. He might have a few years, he said. Or he
might have a few months.
"I cry almost every day for might-have-beens," he
said. "But its just a momentary passing tear at
something that's especially poignant. It's just a
passing emotion, but it becomes part of your psyche
in preparing for the future, and then it's not as
terrifying.
"Oh, it'd be nice to think about living a lot longer
and having all the time. But there's an attraction to
going, too. We hear things about what's waiting for
us and we have notions about it, and I'm curious to
find out what it in. And if that happens sooner rather
than later, that's fine.
"Meanwhile, Dick in there for me, not just on the
other side, but here, now. That's something! find
very comforting. And I know if lend up feeling more
and more ill, there'll be someone out there waiting
with an outstretched hand. And! have a very good
idea who that'll be. So I won't be alone."
0 0
HI enningson felt oddly light-hearted as he
scattered Hanson's ashes into the stony
creek. His bleached blue jeans were held
up by suspenders, soda straw Panama
hat kept the sun out of his eyes as he walked out to
the creek where Hanson had played as child. The
waters there tumble rapidly during spring runoff,
eventually spilling into the Minnesota River and
along to the Mississippi.
"Dick got a lot of fish out of there and ate them, so
throwing his ashes back there as fish food injust
returning the favor," he said. "It's part of the natural
cyclo of the earth, ashes to ashes.
"That may sound a bit too flip, but that's how I
felt."
That afternoon, he and Mary Hanson-Jenniges
planted a memorial petunia next to the geraniums
on Hanson's mother's grave. A few days later, a
church member was mowing the cemetery lawn and
cut too close around the tombstone. The petunia was
mowed down.
Henningson was unperturbed. "The roots are
strong. It'll grow back."
PAGENO="0290"
Bert Henningson's obituary is already
written. He wrote it himself, lea vinga
blank for the date of his death.
The date is the only uncertainty left for
Hennlngson. He was diagnosed with AIDS last fall -
the day after his 41st birthday and less than two
months after his longtime partner, DFL Party
activist Dick Hanson of rural Glenwood, Minn., died
of the same disease.
The story of Hennlngson and Hanson - farmers,
political activists, friends, lovers and, ulttrnately,
ambassadors for the humane treatment of AIDS
victims - was chronicled last summer in this
newspaper.
But their story didn't end with Hanson's death. The
l8monthsHonningson spent nursing his partner
proveda cruel dress rehearsal for the remainder of
his own life.
After Hanson dieo~ Henningson - apri vats and
pragmatic man - retreated to the Glenwood farm
the men had ihared for five years. As his health
deteriorated, he tended to final business: Ifesold the
farm, moved to his parents' home in Ortonville
disposed of his possessions and wrote his will and
obituary.
"People ask me If I'm giving up, if I've come home
to die~' Henningson said. "But that's nota good way
to put it. It's not just about dying, but about the final
phase of life."
Hennlngson fell gravelylllin February and was
not expected to live through the end of the month.
But after25 daysin the hospital, he gained enough
strength to return home, and is making plans for the
summe~
"I'm not ready to go," he said.
So, for now, his obituary remains tuckedin an
orderly file cabinet, in a folder marked "personal."
"It's just one page, very brief, but it hits the main
point~"be said. "It includes Dick and the fact that
welived together and farmed together and that I
taught"
He catches himself speakingin the past tense.
"But we're getting ahead of the story, aren't we?"
I I
The release form was approved for 2 p.m. on
a recent Thursday, but Bert Henningson
wasn't about to wait for lunch.
He was dresaed by midmorning,
Impatient for his parents to rescue him from the
confines of Ortonviile Hospital. He was too weak to
lace his new high-top Reeboks, the pair his mother
bought him to steady his ankles, which were wobbly
after three weeks in bed. He stuffed his swollen feet
Into his old sneakers and dozens of get-well cards
Into a battered cardboard box.
The grass held the promise of spring as his parents
wheeled him up the sidewalk to their lakeside
cottage. The ice would be out soon, and the plank
pier would be readied for another fishing season on
Big Stone Lake.
Rennlngson Shuffled into the sun-washed living
room, touching the familiar furniture and walls as
much for comfort as support He saggedonto the
couch, rulsed his hands in double victory signs and
burst into tears.
"I'm home," he said.
For Henningson, life will end where It began - in
Big Stone County on Minnesota's western fringe,
surrounded by family, near the land his maternal
great-grandparents bomeatesded in 1878.
A glacial divide cuts through here, a ribbon of
waterways and land shelves that once offered
peaceful sanctuary to the Indians, and bountiful
harvests to the white settlers who followed. It is hero
that Henningson nurtured a love for organic farming
and radical politics.
"There isa great deal of strength and power to
draw out of the soil here, a real grounding," said
Henningson, a historian and agricultural economist
with a Ph.D. in international trade. "For me, it's
magic."
He left his family's grain farm after high school,
earning advanced degrees at the University of
Arkansas, then working in Washington, D.C., sea
congressional aide to Minnesota Democrat Richard
Nolan. He ran a draft counseling service during the
Vietnam War, worked sean orderly in Twin Cities
nursing homes and was an adviser to Senate
candidate Mark Dayton.
He returned to the country six years ago, to
neighboring Pope County, to live with Dick Hanson
at the century-old Glenwood farm. Henningson
taught at the University of Minnesota-Morris while
Hanson took classes, and the two men worked side
by side on the farm - slopping hogs, campaigning
for the Rev. Jesse Jackson and local liberals, leading
farm-foreclosure protests and enjoying the
homosexual love they had suppressed most of their
lives.
Hanson's ashes were scattered there last summer.
He died July 25, at age 37, alters six-month crusade
for AIDS education that took him from small-town
churches to the Minnesota Senate.
When AIDS hit Henningson with full force a few
weeks later, he was neither surprised nor bitter. A
fatalist with a wry wit - courtesy, he says, of his
Danish ancestry - he sensed that the stress of losing
Hanson would hasten his own decline.
"I guess the way some people look at it is, `You're
being robbed,' "he said. `But I don't. I never wanted
a career - suits and ties and power and money. So I
haven't really had anything taken away from me,
except a few years.
"And it's like the Smothers Brothers always said:
You never know when you're going to be walking
down the street and get run over by a moose."
H enningson left the Glenwood farm after
the last leaves fell in late October. He
sought refuge therein September when
befell ill, spurning the attention Hanson
craved in the last months of life.
"I wanted to see the autumn through out here
alone, to have a chance to imprint it all in my mind,"
he.sald.
Henningson was taking AZT, or azidothymidine,
an experimental drug believed to prolong - but not
save - the lives of AIDS sufferers. But the initial
boost of energy he felt from the drug was suddenly
gone, and he collapsed with exhaustion and grief. His
telltale blood counts had stabilized, but his weight
had dropped to below 110 pounds - gaunt even for
Henningson's slight frame.
Before long, he would be too weak to care for
himself. He considered his options: The easy answer
lay east, in Minneapolis, where he would have quick
access to state-of-the-art medical care and where he
could count on the anonymoun acceptance of the gay
community.
THE EPILOGUE
PAGENO="0291"
But Henningaun ia a country peraon who dialikea
even the smell of city air. He did nut want to rely on
the klndneaa of atrangera for hia care, hut wanted to
return to hia roota, to family and frienda and farm
neighbors.
And he wanted to continue hia lifelong role aa a
political activist and teacher, thia time by carrying
the meaaage of AIDS and homoaexuality to
Ortonville.
"The miniater aaid, `Come home. Challenge ia.
Teach ua,' "he aaid. "They see me. They see hew thin
lam and aak questiona. It'a aort of a pasaive teaching
role, a challenge to the community, a chance for
them to chow their humanity and become informed."
It took Henningaon only a few minutea to pack.
Everything he took with him fit in hia yellow
Cavalier.
The farmheuoe waa atripped to the baaica.
Hanaon'a sister claimed the upright piano and what
furniture waa worth aalvaging. Hanaon's political
papera were given to bin alma mater, the Univeraity
of Minneaota.Morria, for the archivea, aa were
Henningasn's agricultural eaaays. Henningson'a
books were donated to the university for an
exchange program with a coliege in Nigeria.
Hanson's clothes and ali but a handful of personal
mementos were discarded.
"There wasn't ever much of sentimental value
that we had around in terma of objects," Henningson
said. "I wanted all his personal effects gone, a clean
sweep. I didn't want anyone rooting through them."
The farmhouse still held the vestiges of their life
together, and of generations of Hansons that came
before. A ceramic pig - neither piggy bank nor
cookie jar - rested on the refrigerator, next to a tin
of oatmeal. The kitchen wall clock was rimmed by
miniature portraits of ali the presidents through
Lyndon Johnson. Mismatched dishes - expensive
sad cheap, plastic and china - iny jumbled in the
pine butch. The dining room light fixture was draped
with tinfoil, tscked there when Hanson was sick so
the light wouldn't glare is his sensitive eyes. The
deep freezer was filled with turkeys bought cbesp
from a neighbor who was going to gas his surplus
crop.
Outside, the kittens of last spring had grown to
cats but were no less skittish, racing under the shed
at the sound of footfalin.
Hanson's oldest brother, Jobs, owns the farmhouse
asd surrounding acreage sow, and hopes to pass the
homestead to his sons.
Before Hesningson left the house, he est one last
time at the black.psisted piano where Hanson had
practiced church hymns and where the two men hsd
played old folk duets.
Hensisgoen flipped the sengbook open, played s
single, wordless verse, then walked out forever. The
sesgbook remained open to the tune - "Somewhere
Over the Rainbow."
S 0 0
IvI[ emeries of Hansen come back to
Heunisgsos at edd moments,
sometimes unbidden.
"One time I was hiking down the
read by the barn and I esw this beautiful monarch
butterfly - and it was dead," Hessisgson esid. "And
I thought, `Oh, bow besutiful. And it's dead. Just like
Dick.' And then I cried."
Another time, he lashed out is anger at astray
tomcat caught stealing food from Hanson's farm
cats. The next day, he regretted the outburst and
welcomed the tomcat to the fold.
Much of his mourning occurred before Hansen
died. Later, his grief was postponed by the tasks at
band. He closed Hansen's estste and erganized a
regiesal agricultural conference for the Minsesets
Agriculture Department, where be werked ass
policy adviser to Cemmissieser Jim Nicheis. He
finished a free.lasce article on the nation's farm
policy for the Missesoin Historical Society, quoting
extensively from the 19th century Indian leader
Chief Seattle. He put his insurance papers in order,
then quit his job so he could qualify for medical
assistance. Each week, he made the weekiy drive to
Minneapolis for bleed tests and ssti.pseumonia
treatments.
With matter.of-fact efficiency, he applied the
lessons be had learsed from Hanson's death to his
own. He interviewed doctors and hospice officisis in
Ortonville to make sure they could hasdle as AIDS
pstient. He asked the misister of his parents' church
to help with his care if the seed srose. He issued
orders sot to prolong his life artificially.
Once is Ortonville, he turned his attention to
staying healthy - taking daily walks slung the
shores of Big Stone Lake and working out each
morning on a rowing machine. He cranked up his
Apple II computer and answered the letters he had
received is the wake of Hanson's desth.
"I can finally leads reflective, contemplative life
- one that I've sever bees able to lead because I've
always bees too busy," he said.
Hessisgsos saved few keepsskes of bin life with
Hansen, too few to clutter the top gf his dresser in
the tidy upstairs apartment of kis parents' Ortusville
home. There ins red bssdssss Hsnsos wore during
political demonstrations, s pink cnsdle he burned in
the farmhouse porch when Hanson was out late on
the campaign trail, the "E.T." key ring Hanson gave
him the summer sight they vowed to stay together,
ND
PAGENO="0292"
When Henningson came to Ortonville - bringing
AIDS and the stigma of homosexuality with him -
his mother wondered lithe town would live up to its
name.
"We had all kinds of concern if people would
accept him, lithe doctors would treat him," Ailys
Hennlngson said.
She han not been diaappolnted. Townspeople
routinely bring food and flowers to the house and ask
about Henningson's health, although the subject of
homosexuality is carefully skirted. The cards sad
letters and calls are constant, sad express an
acceptance of AIDS sad homosexuality that
surprised the elder Hennlngsont
"I don't sense the same fear of AIDS In the
neighborhood that I did six or eight months ago,"
Berton lfennlngson Sr. said. "Isuppose that's
because Bert Jr. is here and they don't see any little
bugs running out of the house.
"And I think the education is helping everywhere.
I listen to the radio talk shows late at night and it
seems people have quit calling and saying they ought
to pen them (homosexuals) all up."
A neighbor apologized toone of llenningson's
brothers after tolling an AIDS joke. And
llenningson's father is treated with respect by his
"Norwegian ksffee klatsch,"a group of retired
friends he shares coffee with each morning.
"One fells always told stories about fags and
queen, hut he doesn't anymore," the senior
Henningson said.
"People are more curious about Bert than afraid,"
said Duane Ntonemsn, a wslipaper hanger by trsd~
and a member of the Ortonviile City Council.
"Ortonville is not an homogeneous ass lot of sihail
towns, so the paranoia can't get out of hand like it
does is seme places."
Henntagson is treated at Ortonvilie Hospital by
Dr. Michael Sampson, who spent the previous ste
months educating nurses, orderlies and local
ministers about caring for AIDS patiesta. Sampson,
31, studied under seme of the state's top AIDS
physicians at the University of Minnesota Hospital
sod Clinic and at Methodist Hospital in St. Louis
Park before moving to Ortonville last year.
"I think If you asked the nurses if homosexuality is
an acceptable lifestyle, most wsuld any no,"
Sampson said. "But they'd say the same thing about
smoking, and we take care of slot of smokers. Our
job is to take care of sick people, and AIDS patlenta
are sick. We can't refuse people because we don't
agree with their lifestyle."
Sampson tightened the hospital's infection-control
procedures, making It standard practice for nurses.
to wear rubber gloves when they handled
Hennlngsoq or his bedclothes. Some ignored the rule,
while others took It so seriously their hands grew
chapped from pulling gloves on and off.
For a time, Heoningson's hospital meals were
served on disposable Styrofoam plates with plastic
tableware rather than on china - an indication to
him that "someone wan Imposing their fears." He
mentioned It to Sampson and it stopped.
"My confidence is the humss family has reason to
be sky high," said the Rev. Wilfred Hansen, pastor of
i LI.
Hanson's class ring and a rare picture of the two of
them "cleaned up" is sport ceota.
The pain of Hanson's passing has eased with time.
Often of late, Heooingaoo feels too sick to think of
anyone hut himself.
But the loneliness lingers, commanding his
attention and occasional tears. Eveota that would
have been been cause for celehrstios with Hanson -
the Minnesota Twins' surprising World Series
* victory, Jesse Jackson's ssowhaliing campaign -
are now poignant reminders of his loss.
"On the night before Christmas, I turned on the
Christmas lighis and ant there thinking of the
previous Christmas Eve," Henningsoo said. "Dick
bad just gotten out of the hospital that night, and I
brought him hack to our tiny apartment and he
turned on the Christmas lighta and just beamed with
joy.
"So Ijust sat back sod sobbed to myself,
remembering. Dad was in the den watching the sews
sod Mom was in the kitchen making supper. And by
the time they hollered out that supper was ready, I
wan done with my crying and noose was the wiser."
n a a
A small !._ars grscea the masthead of the
Ortooville Isdepeodest. Next to it is the
community's unofficisi motto, "The Tows
with a Heart," adopted last year after
resideata raised several thousand dollars for a yourp
boy with cerebral palsy.
PAGENO="0293"
the Congregational church. "The people here aren't
perfect, but they're just about the best you'll find
anywhere."
Hansen has used Henningson'a illness to Illustrate
Gospels about God's unconditional love.
"Is compassion to be reserved only for those the
church deems righteous?" Hansen said. "I can't do
that, and I don't think the Lord ran around doing
that."
Such acceptance has been a sourceof pride to
Hennlngson, who says he expected no less of
Ortonville residents.
"It's such a contrast from Arcadia, Florida, where
they burned those kids out of their house~"
Hennlngson said. "No one there would take the
moral l~esponaIbility. But here, they are willing to.
"And I think I helped in that education process. It
becomes something concrete, rather than an
abstraction. Then people have to deal with It. They
can't say It won't happen here."
a a a
~3 erton and Ailys Henningson were --
celebrating their 40th annIversary the night
they learned their second son, Bert Jr., was
gay and living with Dick Hanson in
ne boring Pope County.
"It was like everything had fallen out from under
me," Allys Hennlngson said. "But I told him he
would always be my son and! would always love
hint"
"There was some disbelief," her husband said.
"Stuff like that always happens to someone else."
Six years later, they still don't claim to understand
or condone homosexuality.
"I can understand the affection one male could
have for another, and a female for a female," Berton
Henningson Sr. said. "But the sexual bit - that just
leaves me cold."
That lack of understanding has not hindered their
acceptance. They welcomed their son's partner to
their hdme fOr holiday gatherings, consoled
HenningsOn when Hanson died, stood with him at
Hanson's memorial service.
And when Henningson was diagnosed with AIDS,
they asked him to come home.
"What else was there for him to do?" Ailys
Henningoon said. "I couldn't see him going to the
Twin Cities and living in some tiny apartment alone.
At least Dick had Bert Jr. to look after him - but he
would have had no one. And we were taught you take
care of your own.
"It will show the communities, too, that those men
can come home and live out their days. They don't
have to be herded into the cities and die alone."
"Kidsdon't ask to be brought into the world,"
Berton Henningson Sr. agreed. "But when they get
here, they're your responsibility. You have to accept
them the way they turn out to be."
The Henningsons retired from their Graceville
farm to the lakeside cottage in Ortonville,
population 2,500, in the early 1970s, after their four
children were grown. They attend the liberal
CongregationalUnited Church of Christ, belong to
the local hospice association, and place a high value
on open.mindedness and independence.
* Berton Henningson Sr., 71, ins sell-described
leftist who was influencedby the radical food-
holding actions of the Farm Holiday Association in
the Depression, and was an early member of the
National Farmers Organization. His intellect in
quick and critical, his wit acerbic, his manner gentle
- traits passed on to his second son and namesake.
He recently was declared legally blind, but still
Walks three times a day along the peninsula road.
Ailya Henningson, 70, cast her~lrst presidential
vote for perennial socialist candidate Norman
Thomas and spent the first two years of married life
alone while her husband fought m World War IL She
PAGENO="0294"
dabbled in theater and the arts in coll~ge, and taught They faced their grief as a complete family, the The vote was taken again. This time, life won.
at the Gracevifie PublicSchools, where she was senior Hennisgsons supported by their children. "I hate to put him through all this," Ailys
elementary school principal for 18 years. Her salary Chris Henningson, 42, nad driven with his teen-age Henningson said. "But if this is what he wants, I have
was set aside for college for her children, daughter from their home in Roseville. His presence to respect what he wants."
"I never wanted my boys to farm," she said. "It was a source of special comfort to Henningson, who
was always so disa~polnting - just when you always had sensed that his life as a gay farmer had "At the same time, you and the hospital staff will
thought you'd get cad, the prices would go down." strained his relationship with his more traditional be learning something?" Bert Henningson Sr.
She Is reserved but gracious, an active volunteer older brother, a corporate employee at Unisys. answered his own question witha nod. "So even if he
in several civic organizations and a late-blooming Janelle Adams, 38, had flown in from Portland, Ore., dies next week, it won't be a complete waste."
writer who has ha poems and short stories where she writes computer manuals. Since i . .
published in regional publications. childhood, she has been Henningson's confidante and
son was gay. His brief marriage to a childhood night. Herhusband was driving cross-country to join the teasing smile - replaced by a look that
The Hennlngsons had little reason to suspect their defender, and now sat with him through much of the he glint in Henningson's eyes is gone, as is
friend had ended, but he seemed launched on ~ her. Jim Henningson, 37, an Ortonville electrician, often seems flat, hollow and lonely. Where
promising career in politics and education. At ~ had the painful task of handling his dying brother's once bespoke in eloquent arguments and
point, he confided to his father that his ambition was business affairs. He was there with his wife, Bonnie, rich stories, his speech has become slow and clipped.
to be the US. secretary of agriculture. a local nurse. Their 12-year-old son, Danny, makes Much of his laughter is gone, too, as if it takes too
Not long after, he confided he was gay. daily after-school visits to his grandparents' house to much effort. Most emotions surface in tears.
"He said not to worry about him, that he was visit with his sick uncle. lie was released from the hospital two weeks ago,
happy," Ailys Henningson said. "But things were just One by one, nudged by matriarch Ailys after what Sampson called a `miracle man"
g to open up for him, and then with this. . - we Hennlngson, they spoke their piece. It was family recovery. A public health nurse comes in the house
knew nothing would ever be open for him again." tradition, to vote on matters of import. One such each day to administer intravenous antibiotics
"At first, I thought it was pretty stupid," Berton family vote, years earlier, involved the color of the through a permanent catheter in Henningson's chest.
Hennlngson Sr. said. "He ha so much going for him, kitchen, Witha little urging from mischievous The four-hour treatments will continue daily for six
- - -- But what it boils down to is if he's satisfied. Berton Henningson Sr., the four children chose weeks, then twice a week for the rest of his life.
That's all that matters." flamingo. "He could go on for months," Sampson said. "But
with these infections in AIDS patients. . . it's like
n n
On this night, the vote was unanimous. They would they're knocking on the door. He's had one and now
let Henningson die. . all the others are waiting to come in."
he Henningson famil" filled the waiting "He never wanted to prolong his life," Sampson Henningson's progress is measured in small steps
room at Ortonv~ie }fospiisl late one said. "He law what Dick went through and he said, - an increased appetite, the strength to walk
~ February evening. They held hands and `That's not for me," without support, the ability to climb the sisira to his
.~ listened as the doctor described computer room. He has plans for the future - to
Hennlngson's condition: Later that night, alone in his sprawling house write essays about homosexuality, to tape-record a
Re had cryptococcal meningitis, an infection of overlooking Big Stone Lake, Sampson dreamed history of his political days and to takes postponed
the brain that had rendered him near-comatose and Henningson was standing by the edge of the hospiisl trip in the West Coast.
paralyzed. His eyes opened when he was talked to, bed. But his recovery is bittersweet, made so by the
and occasionally a tear would slide down his sunken knowledge that it is temporary.
cheek. There was no way of telling if he could hear The next morning, when nurses entered "We don't know what's in store," Ailys Henningson
or understand, Hennings~n'a room, the sick man was teetering at said. "I dos lot of crying. And I do alot of praying,
the bedside, asking for food, that God's will be done - not mine, but his - and
The meningitis could be treated with antibiotics,
but the side effects could be harsh: muscle cramping, "In my dream, I asked him, `Do you want to fight that I have the strength to go through this."
nausea, fevers. A healthy person had only a 30 in 40 this or do you want to die?'" Sampson told the "When he was so sick there, I was almost hoping
~ercent chance of surviving the cure, Sampson said, family when they met again that morning. "He he'd die and get it over with," Berton Henningson Sr.
Henningson's weakened state - he weighed less didn't answer me in my dream. But I sure think he's said. "But if he can have some relatively good time,
than 90 pounds, 40 pounds below normal - the answering me now.. . . He said he wanted logo for and people can learn from this, then it's OK."
chances of making it through the night were 10 it." Henningson's days are tinged with pain, and the
painkillers make him vomit. An occasional
week's end.
percent. He would almost certainly be dead by The prognosis remained poor. "Either he'll die harshness has returned in his personality, rekindling
here in the hospital or he'll get well enough to go tamper and impatience that he had long ago
"Right now, he's comfortable," Sampson said. "It's home and die," Sampson said. "At best, we're buying
not abed way to die." him some time."
PAGENO="0295"
channeled into political cauaes. At times, he shows
signs of mild dementia - the confusion and lethargy
often asaociated with senility. But when the subject
turns to politics or social justice issues, he is
crystalline.
Henningson decided long ago not to prolong his life
artificially. He would welcome supportive care to
minimize the suffering, but he would not tolerate an
existence on tubes and machines.
"I tried to work everything out with the doctors
about critical care and not taking heroic measures,"
Henningaon said. "But things don't stay black and
white. They turn to shades of gray."
In the hospital, he made several life-and-death
choices - whether to take the antibiotics, whether
to be fed intravenously. Each time he would decide
- slowly and fuzzily - to live another day. Then he
would get another crashing headache, or lose control
of his bladder, or fall an he attempted to stand, and
he would burst into tears.
"This is no way to live," he said.
He pushed himself with thoughts of the spring, and
of seeing - perhaps for the last time - the crocuses
blooming through the melting snow.
"~ want to walk on the grass," he said in the
hospital "They're afraid I'll fall. But if I fallen the
soft ground, what difference does it make?"
And now that the spring inhere, and he is home
again, he seems less sanguine about death.
"It's nice to talk about getting prepared and not
having any intensive care," he said. "But when it
comes right down to it, there's only one question.
What do you want to do - live or die?"
~ur -`sr enningaon revised his obituary a month and a ~ig farm.
14 11 ago, the day he entered the hospital He `The ashes èomé in a plastic bag with a twistie,"
k~i Identified Hanson as his "partner-in-life" Henningson wrote, "and are placed in a box about
J~ J,~. and noted their work together for gay the size of a shoebox."
rights and AIDS education. Another folder holdd a sketch of a memorial quilt
"I was afraid that Mom and Dad wouldn't" include Henningsoul designed. His sinter, Janelle Adams of
Hanson, he said. "Not through any sense of wanting Poinland; (ire.; is stitehing the 3-by-S foot patch,
input us hack in the closet, but just that they which *111 be added to a traveling display of quilts
wouldn't think of it." memoi~lalizing AIDS victims across the country.
He also remembered the "crush of grief" that The pattern includes symbols of the things most
followed Hanson's death, and wanted tO spare his dear to Hennlngson. A circle at the center represents
family the burden of writing an obituary when his God's love encompassing heaven and earth. It
time came. surrounds a triangle, the brand used to identify
Hennlngson's file cabinet reveals other examples homosexualsin Nazi Germany and now the universal
of his penchant for organization - what he calls symbol of gay pride.
"the curse of self-sufficiency' - and of his desire to A smaller triangle upholds the other forms, and
remain in control of his life eves when it's over. rests on golden stems of wheat, the staff of life.
The most tailing isa formal letter of instruction to "That is the heart, rooted to the earth and
his youngest brother about the handling of his estate: reaching in the sun and beyobd," Henningson said. A
A lawyer in Glenwood is owed some money for . squarebordering the design represents "the endless
handling Hanson's estate but has made no effort to turning of the four seasons."
collect. Most of the outstanding bill at Hennepin The quilt will carry their names, the dates they
County Medical Center is covered by insurance; the died and the epitaph Henningson wrote for himself
rest should be paid out of Henningson's estate. A and Hanson:
single memorial service in Ortonville willbe "Openly gay and at home on their family farm in
sufficient; friesds in the Twin Cities can arrange a rural Minnesota, their love ran deep as the prairie
separate service If they want. The obituary shoUld be soil"
distributed to various newspapers in the Twin Cities
and rural Minnesota. A cremation is Minneapolis has
The tone of the letter remains detached, but the haunted by visits from the other world. Dead
been paid for. n the final weeks of his life, Hanson was
subject turns personal Henningaon lists his wishes relatives, most frequently his mother, would
about the distribution of his ashes. Half are to be rome to him in dreams, seeming to bid him to
sprinkled in Big Stone Lake, half on an island that cross over,
has, In its day, been both an Indian spiritual ground Henningson has had no such visits, not even from
PAGENO="0296"
death. As the numbers grow, the victims
become cases rather than people;
distanced from names and faces, the rest
of us grow immune to the horror.
We tend to write about the special
cases: the first celebrity, the first school
child, the first dentist. Dick Hanson is
none of these. Rather, he is one of us - a
native Minnesotan, a farmer, a political
activist, someone's son and brother and
uncle.
Human side of AIDS numbers
Hanson. He remembers little of the February week
he lay near death. It is just blank time.
"It wasn't until two weeks later that I found out
everybody thought! was a goner," he said. "I figure
as long as! don't see those other people, I'll be all
right."
But then he talks of an ides he has for a short
story, something he wants to write on his computer
as soon as he is strong enough. As he tells it, it sounds
more like a dream or a vision or, perhaps, a wish,
"It was Christmastime, at the midnight service,"
he said. "The whole family went - Mom and 1)ad
and Jim and Bonnie and Danny and!. Pastor Will
was giving the service and people were singing
hymns.
"And in the middle of it all, I suddenly heard this
voice. It was Dick. I could hear him, clear as
anything. I looked around the church, then looked
hack and there he was, but only! could see him. I got
out of the pew and went in him and we walked up to
the front of the church together, singing.
"He said, `I'm here to take you with me if you
want to go.'
"What was nicest about it was I could actually see
him and he was the same old Dick, before AIDS.
When you think about dying, you see those clear
images of people who've gone before, but you don't
know what physical presence they'll beta. What was
beautiful about it was that! realized yes, indeed, you
do get to have the presence again. You're not just
some electrical impulse floating around the
universe.
"So when he asked, and I could see I could have it
all hack again, I was ready. And he took my hand,
and we ascended."
MARK ~ADLER
~W~A~O ED~TO~
IThis column is reprinted from
Ssnday, June 21, 1987.
Today, we have devoted most of the
Focus section to the first instalment ins
series called "AIDS in the Heartland."
Frankly, we don't know how many more
stories will follow, for it isa truly
unusual series.
Reporter Jacqui Banaszynski and
photographer Jean Pieri are engaged in
chronicling the life and death of AIDS
victim Dick Hanson. In a sense, our
reporting mirrors the uncertain pattern
of Hanson's waning life; we sift through
his past and present, struggling to discern
and describe what to meet important,
hoping that enough time remains to tell
the story to ito fullest.
At first glance, this series could be
misinterpreted ass ghoulish death watch.
In truth, it isa testament to the faith and
courage and good humor of a man who
awakens each day to the certain
knowledge of his approaching death. That
in itself, makes its compelling story.
But Dick Hanson's story is much more.
It supplies the human factor to the AIDS
equation that so often is told only in
numbers.
We tend to write about the AIDS
epidemic in terms of numerical
milestones: the 200th case, the 100th
his family has farmed for nearly a
century.
In short, Dick Hanson is neither a
statistic nor a stereotype. He believes, as
we do, that therein much to be learned
from his living and dying. And that is why
we are telling his story.
For the sad truth is that despite all that
has been written and spoken about AIDS
in recent years, the epidemic is still
shrouded in ignorance, Countless
Minnesotans, for example, believe that
mosquitoes can transmit the disease,
despite all medical evidence to the
contrary. Over the airwaves, evangelists
describe AIDS as divine punishment of
homosexuals. Even more frightening, a
report published just this past week
indicates little decrease in Minnesota of
the unsafe sexual practices that spread
the disease.
That kind of ignorance is dangerous for
all of us. Moreover, ignorance breeds
fear, and a search for culprito rather than
cures. Dick Hanson is no culprit.
Whatever you may think of his polities or
sexual orientation, it is impossible to
read his story and think of him as
anything other than a decent, sensitive
man determined to make some sense of
the tragedy that has befallen him and
thousands of others.
His is the great tragedy ofour times,
and his isa story worth telling.
We tend to write about the prevalence
of AIDS among drug users and
homosexuals with promiscuous lifestyles
who prefer to die in the anonymity of
large cities. Dick Hanson and Bert
Henningson live together ass committed
couple with a deep relationship. Hanson
has chosen to live out his final months in
the rural Minnesota community where
PAGENO="0297"
about Hanaon. As Banaszynaki haa
said, it was also a love story shoot
Hanson and his partner, Bert
Henningson, who lived as a
committed couple isa deep
relatienship.
And the story was shoot the
aogoish of their familiea and their
communities trying to come to
grips with homosexsslity, disease
and death. We owes debt of
gratitude to Hanson and
Hesningson and their families for
sharing their lives and pain with
us doring the long months it took
to do the series.
The assignment was one that
required a particular combination
of sensitivity, toughness, tenacity
and dedication to journalistic
excellence. Banaszynski and
photographer Jean Pieri have
that combination.
I saw it before when they went
to Africa three years ago to write
about the famine in Sudan.
Bsnaszymki was a Pulitzer
finalist in international reporting
for her work on that project
The ides for the AIDS series
came from many quarters.
Bsnsszynoki called it
"opontaneoua combustion in the
newsroom." It came from editors
and reporters brainstorming;
Pieri was the first to pursae it.
Pieri also was an important
player in oor doing "AIDS in the
the series appeared, many let us
know they did not want to read
shoot gay people or AIDS. Some
felt we were glorifying
homosexuality.
Another, from a 55-year-old
state Capitol security guard, said
"Eacb chapter both tore me apart
and also gave me a great sense of
serenity in bow the two dealt witb
the disease. In all honesty, all
three chapters produced tears...
lam not toucbed by slot of
things, bet this was so special,
writ~ g and story telling at ith
finest."
Getting letters like that from
readers is, in tbe long ron, more
important than winning prizes.
Prizes are nice, bet they don't
toucb people's besrt~
.(:~`
Pulitzer Prize the final chapter in a
poignant story
0 This column la reprinted
trom Sunday, April 3, 1988.
It was a great week in our
newsroom.
As you probably know, Jacqui
Banaszynski won the Pulitzer
Prize for feature writing fore
series chronicling the last months
in the life of Dick Hanson, a
farmer and political activist who
died last year of AIDS.
Nothing in journalism quite
equals winnings Pulitzer Prize.
And to win two in tbree years -
we've been finalists five times in
nine years - is really special for
a newspaper our size.
Winning the Pulitzer is an
enormoes boner for Bansuzynaki.
But it also is an affirmation for
the staff that we are doing the
kind of journalism that is
recognized nationally by our
peers.
But we didn't do the aeries to
wins Pulitzer. We did the series
becsese we wanted to bring home
to our readers - and to ourselves
- that the AIDS epidemic was
much closer than San Francisco
or New York.
Indeed, as the series title said,
there in "AIDS in the Heartland."
AIDS is net jest about dmg
addicts or gays dying after
loveless encounters in bsthheeses
in big cities.
As the numbers grew (in
Minnesota, there have been 334
cases and 194 deatha(, the victims
tend to become cases rather than
flesh and bleed.
But AIDS in about people like
Hanson, a farmer in Gleawood,
Minn., someone's son and brother
and uncle, someone equally at
home in church or in the garden
or at a DFL bean feed or a protest
march.
But by the time the final
installment ran, Ibe tide turned.
We received many letters of
praise. One, from a federal judge,
said: "Your series humanized and
focesed a terror Ibat is swiftly
becoming j,ervasive. Your work
was sympathetic but objective
and in a most skillful fashion
helped teach tbe community to
care."
Heartland." Without her
persistence, we would not have
won the Pulitzer. She kept es
moving wben we were begged
down. And her wonderful photos
helped make the projects story of
courage and peignancy.
Many others helped the project
along the way, particularly.
Managing Editor Mark,Nadler,
Metro Editor Doug HenneS and
Assistant Metro Editor Jack
Rhodes, Banaszynski's boss. And
Graphies Editor Jennifer Greene
and Picture Editor Ben Brink
were vital in the layout, photo
selection and production.
But the words that won the
prize were all Banaszynaki'n. She
in as goods reporter as I know.
She in a risk-taker. It's one thing
to risk professional capital ins
difficult story, but it's quite
another to rink emotional capital.
Banaszynski baa the wherewithal
to drain herself into a story, and
that isa quality highly prized and
seldom found among even the bent
reperters.
Ali of our readers may not
share our happiness shout the
Pulitzer. After the first article in
CD
C.'3
The story was mere than jest
PAGENO="0298"
294
TESTIMONY OF PETER P. SMITH, PRESIDENT OF THE PARTNERSHIP FOR THE
HOMELESS, BEFOR5 THE U.S. HOUSE OF REPRESENTATIVES, HOUSING
SUBCGHHITTEE, MARCH 21, 1990 ON
H.R. 3423, AS AN AMENQMENT TO H.R. 1180
Mr. Chairman and Members of Congress:
Today you consider the matter of rapidly growing homeless-
ness among people with AIDS and related illnesses and the course
which this nation should take in attempting to meet a crisis
which it has too long ignored and now struggles to address
without a sufficient commitment or resources -- or apparently
even a complete realization of the full consequences of its
continued failures in this regard.
Last year, The Partnership issued the first -- and to date
only -- comprehensive report on homelessness and AIDS in New York
City which I have shared with your staff. Based on the detailed
and supported estimates contained in that report ---updated by
further information developed by the New York City AIDS Task
Force issued in June using data from the New York State AIMS
survey and the SPARCS discharge database -- we can now estimate
there are at least 8,000 to 11,000 homeless PWAs in New York
City. Homeless PWAs are ~gy~ in ~ the fastest g~gyjn
~qment of the homeless pppulation in this gj~j~
To meet this huge need, our City, State and federal bureau-
cracies together have managed to provide little more than 200
appropriate supportive housing units as you meet here today -- as
against the projected need through 1991 of 5,160 supportive
housing accommodations in New York alone. This, of course,
excludes both long-term institutional care, such as provided by
Health Related Facilities (HRFs) and Skilled Nursing Homes
(SNFs), and the over 700 SROs currently being used by New York
for PWA homeless--which even the City administration agrees are
mostly inappropriate.
Indeed, so acute is this gathering crisis and so inept our
governmental response to date, that we have projected that by the
end of 1993 there may be as many as 30,000 homeless PWAs and
dependents in New York City alone -- resulting in a possible
paralysis of our hospital and health care system, with unmanage-
able deficits for many of our hospitals.
To start getting a handle on this situation before we are
entirely overwhelmed, the New York AIDS Coalition, which repre-
sents the substantial universe of community-based AIDS service,
education and advocacy groups in New York City, has formulated
detailed funding proposals to develop programs for both suppor-
tive housing and homelessness.
1
PAGENO="0299"
295
Briefly summarized those proposals call for the creation and
operation by the end of June 1991 of 2,240 supportive housing
units in various pz~oven models, including community residences;
the allocation of up to 1,500 city-owned and Housing Authority
units from normal annual vacancies to be used in ~BO scattered-
site apartment programs; and the initiation of a major capital
Development Program to put aminimum of an additional 2,000
supportive housing units for `PWA homeless and near-homeless in a
fast-tracked development pipeline, to be operational by July
1992.
These combined proposals carry the substantial price tag of
over $150 million for the coming fiscal year alone. It is
obvious to anyone at all familiar with the projected budget
deficits for both New York city and State that this need will not
be met unless there is substantial assistance from the federal
government -- almost none of which is currently available.
The national picture is at least as grim. In our recently
issued 46-city survey, all but eight responding cities and
localities report that homelessness among People living with AIDS
and related conditions is increasing, and a full thirty-eight
project further increases this year; only one smaller city
reported no PWAs among its homeless. Over forty percent of the
survey participants report that the number of homeless PWAs in
their cities and localities are in the moderate-to-substantial
range.
In sum, our survey findings clearly demonstrate that PWA5
are an increasing, and in many cases, substantial segment of the
homeless population in the vast majority of the cities and
localities surveyed; growing homelessness among PWA5 is by no
means a problem restricted only to the major cities with the
largest numbers of reported AIDS cases.
While we normally resist offering numerical estimates of the
homeless because of the difficulty of actual counts and lack of
scientifically verifiable baseline data, in this instance we feel
it important to provide some idea of the proportions of this
heretofore ignored phenomenon. By co-relating much of the data
and many of the assumptions used in our New York city estimates
with data provided by the U.S. centers for Disease control and
the trends revealed in our national survey, we are able to
estimate that there are now 28-32,000 homeless PWA5 nationally,
with an additional 10-11,000 children and other dependents who
are also homeless.
Based upon the current average lengths of stay of PWAs in
existing supportive housing models, utilization rates and vari-
ation in unit sizes, as well as recent studies indicating that
about 86 percent of homeless PWA5 can be adequately served by
some level of supportive housing (as opposed to nursing home or
PAGENO="0300"
296
long-term institutional facilities), we estimate that over 16,000
supportive housing~units are needed now just to adequately serve
the current national homeless PWA population and their depen-
dents.
As best as we can determine from presently available infor-
mation, however, there are nbw less than one thousand appropriate
supportive housing units for PWAs in operation across the entire
country -- and, with only a few exceptions, very little in the
development stage. Indeed, only four cities in our survey
reported firm plans or commitments to provide adequate PWA
supportive housing programs, and a full 61 percent reported
nothing at all even in the planning stages to meet the needs of
their growing numbers of PWA homeless.
The projections for the future are even more ominous. Using
current estimates of HIV sero-positives nationally and applying
the best available information on the current progression of the
illness, as well as percentages of PWAs who will need supportive
housing assistance in order to avoid homelessness, we project
that by 1995 there may be as many as 101,000 homeless PWAs and
dependents nationally, with a range of 67,500 to 135,000. A
table containing more detailed information as to how we arrived
at these projections is attached to my written testimony. To
meet this need, we estimate that at least 48,400 supportive
housing accommodations of all models will be required by 1995, at
a minimum.
In addition to the specter of tens of thousands of homeless
PWAs having to struggle to exist -- and in many cases expire --
in inappropriate mass shelter settings and in the nation's
streets and transportation systems, many are unable to be dis-
charged from hospitals because they have no homes or supportive
housing to go to. In many cities, this is contributing to
serious patient gridlock and hugh hospital deficits. And even
more bracing is the risk that the rapidly increasing number of
homeless PWAs could well reduce much of the health care delivery
system to a standstill in many of the nation's cities and locali-
ties.
Faced with these stark possibilities, the June, 1988 report
of the Presidential Commission on the HIV Epidemic urged HUD and
other federal agencies to become substantially involved in
meeting the unique supportive housing needs of homeless PWAs.
Apparently the Commission's message fell on deaf ears; over
twenty-one months later nothing related to these PWA supportive
housing recommendations has been forthcoming from either the
White House or any of its federal agencies.
The HOPE initiative announced last November by the Presi-
dent, in fact offers very little hope and no specific funding
programs to address the needs of homeless PWAs.
PAGENO="0301"
297
The first ray of hope to appear on the federal scene is the
AIDS Housing Oppor~uflities Act (HR 3423) which you consider today
and which would provide $580 million nationally over two years
through HUD to fund the entire array of supportive housing models
and assistance for homeless PWA5.
We would take this oppo~tunitY to respectfully suggest that,
as that Act winds its way through the legislative process, a
provision be added which would make FHA mortgage insurance
available to enhance the development of Community Residences and
supportive SRO housing for homeless PWA5 provided under the Act.
The growing numbers of homeless struggling to live with AIDS
and related conditions is now clearly a problem of national
dimensions. To continue to ignore it, is to invite national
catastrophe. The AIDS Housing Opportunities Act is the first and
currently the best hope to begin to address this need before it
overwhelms us. It is by no means the total solution; but it will
light a candle whose rays will begin to dispel the gathering
darkness which threatens to envelop many of our nation's cities.
We strongly urge the House to place it among the nation's highest
budget and programmatic priorities. Thank you.
PAGENO="0302"
SOURCE; THE PARTNSRSJIIP FOR THE HOMELESS
PREVALENCE OF HO14ELESSNESS AMONG
PEOPLE WITH AIDS AND RELATED ILLNESSES
NATIONALLY BY 1995
DECEI1BER 1, 1989
thy Sero-
.
Positives
Likely to Develop
. L
ikely to Requi
re.
Likely to Become
. Dependents
.
Likely to Becon,
.
(Current
or Related
.
Housing-Care
.
Homeless Without
. Likely to
.
Homeless Withou
.
Prevailing
Illness
.
Assistance
.
Housing-Care
. Become Homeless
.
Housing-Care
.
Estimates)
6
(9
.
7.
8 .
9
.
.
54%)
. (@
.
26% of Col. 2
) .
.
(37% of Col. 3) . (35% of Col. 4)
.
.
(Col. 4 + Col 5
TOTALS
2 MILLION .
1,040,000
.
270,400
.
100,048 . 35,017
.
135,065
1.5 MILLION .
780,000
.
202,800
.
75,036 .
26,250
.
101,286
1 MILLION
520,000
.
135,200
:
50,024
17,508
.
67,532
FOOTNOTES;
6 through"8. For text of these footnotes, please refer to text of footnàtes 6 through 8 to
Attachment B, infra.
9. This percentage is based on data indicating that IVDUs constitute approximately 27
percent of cumulative AIDS cases reported through October, 1989 (See, U.S. Centers
For Disease Control [Center for Infectious Diseases, Hits), )IIYL~ID~ Surveillance
~ tlovember, 1989), and that IVDIJs with AIDS have dependent children on a 1.1
ratio. (See, IV ~ Users With AIDS in New A ~ of jp~p~jTit
çfljp~ jjpU~5~gg and PLWcL Addiction Theatment, Montefiore Medical Center, Albert
Einstein College of Medicine, July 20, 1988.). In addition, a factor of eight percent
is included to capture the estimate of remaining dependents (e.g., other family members
of non-IVDU PNAS, companions, partners, etc.), which is believed to be conservative.
ATTACHMENT A
00
PAGENO="0303"
3Q~6cF: THE PARTNERSHIP FOR THE HOMELESS
PREVALENCE OF IOMELESSNESS AMONG
PEOPLE WITH AIDS AND RELATED ILLNESSES
~L ~ cm ~
JANUARY 1. 1989
cQ~çLUS ION
We conclude that the best estimate of People with AIDS and related illnesses who will become homeless o
be at serious risk of becoming homeless by 1993 unless they can obt~in appropriate housing-care
assistance will be 24,000, with a range of 20,000 to 26,000, and nay possibly reach 30,000.
ATTACHMENT B
Column 1
HIV Sero-
Positives
(Estimates)
* Column 2 . Column 3 * Column 4
.Likely to Develop . Likely to Require. Likely to Become
AIDS or Related . Housing-Care . Homeless Without
* Illness . Assistance . Housing-Care
6 * 7. 8.
(~ 54%) .(~ 26% of Col. 2) . (37% of Col. 3)
9,990
13,353
16, 206
18,700
20,779
200,000
.
107,651
.
27,015
257,000
.
138,780
.
36,088
.
312,000
.
168,480
.
43,810
.
360,000
*
194,400
.
50,544
*
.
400,000
.
216,000
*
56,160
.
Column 5
Dependents of
IVDUs Likely to
Become Homeless
(49% of Col. 4)
4,898
6,542
7,938
9,163
10, 183
Column 6
Likely to Becon
Homeless Withou
Housing-Care
* (Col. 4 + Col 5
TOTA[,S
14,888
20,095
24,144
27,863
30,962
PAGENO="0304"
NUMBERS OF HOMELESS LIVING `WITH AIDS
80,000
60,000
40,000
20,000
1988 1989
* Projoctod from Partnorship (or tho Homoloss doto.
Sourco: Pertner~htp for the Ftomctees, Now York City.
8 Nationwide
~ Now York City
0
PAGENO="0305"
301
Ame~ican Hospital Association
1k~f~~________
Capitol Place, Building #3
50 F Street, N.W.
Suite 1100
Washington, D.C. 20001
Telephone 202.638-1100
FAX NO. 202.626.2345
STATEMENT OF THE
AMERICAN HOSPITAL ASSOCIATION
ON THE AIDS HOUSING OPPORTUNITY ACT, H.R.3423,
BEFORE THE
SUBCOMMITTEE ON HOUSING AND COMMUNITY DEVELOPMENT
COMMITTEE ON BANKING, FINANCE AND URBAN AFFAIRS
OF THE U.S. HOUSE OF REPRESENTATIVES
MARCH 21, 1990
Sunusary
AIDS is a complex, chronic disease that is best treated through an extensive
system of care that includes hospitals, sub-acute care facilities, group
residences, home health agencies, and various social services. Without that
system of care, persons with AIDS (PWAs) often remain in acute care hospitals
too long, which denies them the family and community support that is vital to
their survival. In addition, inappropriate use of acute care resources places
a significant cost burden on hospitals, often concentrating on those hospitals
that are already beset by financial difficulties.
H.R.3423 would help provide the most basic component of a system of care:
residences for PWAs who would otherwise be homeless. Through a variety of
flexible mechanisms, the bill would fund housing placement services,
short-term shelter care, and longer-term facilities that could provide
specialized services, such as substance abuse treatment.
AMA strongly supports this bill, and recommends that it be strengthened by
including a special pediatric grants program to address the shortage of
specialized boarding care facilities for infants and children with AIDS. We
urge Congress to consider H.R.3423 as an amendment to the Omnibus Housing Bill.
PAGENO="0306"
302
Introduction
Mt. Chairman and members of~the Committee, I am Barbara L. Watkins, vice
president of Parkiand Memorial-Hospital in Dallas. I am here on behalf of the
American Hospital Association (AMA) and its nearly 5,500 institutional
members.. We appr~ciate.the~oppor~tunity to testifyin support of H.R.3423, the
AIDS Housing Opportunity Act.
Representatives McDermott, Pelosi, and Schumer are to be commended for their
-efforts to create a flexible solution to the increasing problem of
homelessness among persons with AIDS (PWAs). Their bill would provide funds
for community-based organizations or local governments to deliver:
* referral and coordination services, which facilitate the use of
existing private and public resources when PWAs need help in finding a
place to live;
- o temporary shelter care for homeless people who suddenly become ill and
can no longer live on th~ streets; and
* longer-term residences for PWAs, some of which offer specialized
services for alcohol or substance abusers or the mentally ill.
Since the onset of the AIDS crisis in the early 1980s, hospitals have played a
leading role in treating AIDS by providing acute care, developing specialized-
AIDS outpatient services, and coordinating post-discharge care. However, all
too often, services required by chronically ill PWAs are not available in the
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community, and patients must remain in acute care hospitals long after they
could have been discharged, an arrangement that is neither cost-effective nor
in the best interests of patients. This legislation will help alleviate the
shortage of the most basic "service" of all: housing.
Magnitude of the Problem
The severity of the AIDS crisis is now well-known: over 70,000 Americans have
died, and 52,000 are living with this chronic disease. In fact, the situation
will only worsen as growing numbers of AIDS cases are diagnosed every year.
In 1992 alone, over 80,000 new cases are expected to be diagnosed. The
Centers for Disease Control (CDC) estimates that between 700,000 and 1.1
million U.S. citizens are infected with the human immunodeficiency virus (HIV)
that causes AIDS. Without a significant scientific breakthrough, most, if not
all, of those infected with HIV will be diagnosed with AIDS in the next 16
years. And to date, AIDS has been uniformly fatal.
AIDS presents major challenges to the health care system because it is a
complex condition that is difficult to treat. AIDS slowly destroys the human
immune system, rendering PWAs susceptible to a series of opportunistic
infections and rare cancers. Each infection can require extensive treatment,
and long hospitalizations are not infrequent, some resulting in extended
intensive care. Moreover, serious complications such as blindness, dementia,
incontinence, and oxygen dependence can occur. In many cases, PWAs become
totally unable to care for themselves, sometimes living for extended periods
in dependent conditions.
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-4-
Fortunately, there have been significant improvements in the prognosis and
quality of life for persons affected by AIDS or HIV since the crisis first
appeared in the early 1980s. PWAs now live an average of 22 months after
diagnosis, compared to only 10 months in 1983. This is due in large part to
use of therapeutic agents such as the antiviral drug zidovudine (AZT).
Another hopeful development is recent research that indicates that persons
infected with HIV can delay the onset of AIDS symptoms by using AZT and other
drugs.
/
HIV infection is a chronic illness that requires early care that will continue
for the rest of a patient's life. This care includes expensive tests and
drugs, access to outpatient services, occasional acute care, and after the
disease progresses to an AIDS diagnosis, hospital, home health care, long-term
or hospice care, as well as a variety of psychosocial services.
But progress in treating HIV presents new challenges: the sparse network of
community-based care for PWAs that exists in most areas must now expand to
serve persons with earlier stages of HIV infection. Such an expansion will
require not only adjustments in the health care delivery system, but also a
bolstering of other social support systems, including housing.
The Hospital's Role in the Continuum of Care
Since AIDS was identified in 1981, the central'role of hospitals in delivering
care to PWAs has changed. In early years, hospitals provided acute care and
arranged for post-discharge services where they were available. Often,
hospitals took the lead in putting together special coordinated packages of
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services with a continuum of care for PWAs. As the AIDS caseload increased,
hospitals have depended increasingly on networks of community-based
organizations and local government agencies to share the responsibility of
providing care.
A full range of services is important because AIDS is an "episodic" illness,
in which the level of care needed by patients varies greatly. A PWA may need
acute care one week, home nursing visits the next week, and regular outpatient
clinic visits for several months after that. Many patients require custodial
care or "assisted" living situations, which offer help with the daily chores
of living but provide no formal treatment, except for occasional nursing
visits. Also, some PWAs need long-tern skilled nursing care or hospice care
in the end stages of their illness.
But many of these community services are in short supply for all patients, and
in particularly short supply for PWAs. Moreover, even when services such as
home care, counseling, outpatient clinics, or help with custodial care are
available, PWAs require a residence, and housing is often the most difficult
social service for them to obtain.
Current PWA Access to Housing
Because of our concern about the spotty availability of community-based
services for PWAs, AMA's Society for Hospital Social Work Directors
collaborated with ihe National Center for Social Policy and Practice on a 1988
study of the problem. Three hundred randomly selected hospital social work
directors were asked about their discharge planning experiences regarding the
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availability of commu±iity-based services for PWAs, including residential care
at various levels, social services such as counseling, and support services
such as transportation.
The 111 responding social work directors indicated that they found all types
of services for PWAs to be less available than for other types of patients.
This was particularly true of any service that requires living space, whether
a nursing home, hospice, or alternative group living facility. In 66 percent
of the respondents' communities, services that include housing for PWAs were
judged inadequate, while for non~AIDS patients, they were judged inadequate in
almost 40 percent of communities.
Most distressing, the study indicated that availability of community-based
services is not always higher in cities with high AIDS incidence. In cities
with long histories of providing AIDS services, the growing caseload is simply
overwhelming the capacity of residential agencies. For example, the New York
City Health and Hospitals Corporation has estimated that fully 10 percent to
15 percent of PWAs in New York City public hospitals are homeless and do not
need acute or long-term care, yet they cannot be discharged because life on
the street could literally be deadly.
The Costs of Prolonged .....
Without access to a network of alternative care settings, patients frequently
remain hospitalized longer than necessary. -in New York City, as many as 30
percent of hospitalized PWAs could be more suitably cared for outside the
acute care setting. The single most important factor responsible for lower
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hospital utilization in some cities is the presence of a wide range of
community-based AIDS service organizations, according to Anne Scitovsky, a
nationally renowned health economist who has studied AIDS extensively. In
cities with well-developed networks of those services, the average length of
stay for hospitalized PWAs is substantially lower than in other areas.
o In 1986, the average length of stay for a PWA in New York City was 22
days.
o The average length of stay in San Francisco, which had a more highly
developed community-based network of services, was 12 days.
Inappropriately long hospital stays have unfortunate consequences for private
insurers, public payers, hospitals, and, in particular, individuals with AIDS.
Private insurers. Private insurers are affected because financing unneeded
acute care is wasteful and inefficient. Acute care is the most expensive form
of care, averaging $681 per day for PWAs in 1987. By comparison, in San
Francisco in the same year, basic residential care was provided for $60-$l50
per day, and custodial care for $l70-$270 per day, depending on the level of
care.
Public payers. Unnecessarily prolonged hospital stays produce unnecessary
expenses for state and local programs for the medically indigent, and
especially for state Medicaid programs. Medicaid programs ultimately finance
at least part of the care for 40 percent of all PWAs, compared with only 10
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percent of the broader under-65 population. Because each state Medicaid
dollar is matched by at least one federal Medicaid dollar, the federal
Medicaid program bears part of this burden as well.
Hosoitals. The inappropriate use of acute care exacerbates the financial
problems of providers serving a large number of PWAs, and in some cases
threatens the very survival of such institutions. PWAs ultimately become
disabled and unable to work, and therefore often lose their private insurance
coverage. When this happens, they exhaust their own resources, then either
receive care without payment or are covered under Medicaid. To the extent
that the acute care received is unnecessary, either scenario unnecessarily
adds to the already severe problems of uncompensated and undercompensated care
facing many hospitals.
In 1988, uncompensated care (bad debt and charity care) cost hospitals $10.7
billion. While state and local appropriations-to some hospitals covered $2.4
billion of this, $8.3 billion remained truly "unsponsored" and had to be
either absorbed by±he hospital or shifted to--other payers. Overall, this
$8.3 billion in unsponsored care represented 4.9 percent of total hospital
costs in 1988. But the unsponsored care burden is not evenly distributed: for
1,375 hospitals, it totaled 5.7 percent of costs in 1988, and, in 275
hospitals, it reached 10.6 percent.
Unsponsored care is a growing problem for hospitals because of the large
number of Americans- -up to 37 million- -who have no private or public insurance
coverage. But PWAs are more likely than other patients to lack coverage: in
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a 1987 survey by the National Public Health and Hospital Institute, 23 percent
of PWAs admitted to the hospitals surveyed had no coverage. (By contrast,
among all patients admitted, the figure was under 15 percent.)
Similarly, most hospitals have problems of undercompensated care under public
programs, particularly Medicaid. Largely because of the current epidemiology
of the disease, however, the severe impact of AIDS cases is concentrated. The
1987 National Public Health and Hospital Institute study found that most PWAs
(77 percent) served in the hospitals surveyed were treated by only 20 percent
of the studied hospitals. And because so much of the care was uncompensated
or covered by Medicaid, the average cost of treating a PWA in the hospitals
surveyed was $136 a day greater than the amount reimbursed.
Persons with AIDS. The consequences of inadequate community services, and in
particular inadequate housing, obviously fall most heavily and directly on
PWAs themselves. The quality of life is eroded because they are kept
dependent and isolated from their families and communities. PWAs, as do all
patients, clearly prefer to remain with their families or in their communities
as long as possible. In fact, by using community-based services, many PWAs
can continue to work for months or even years after they are diagnosed. The
absence of housing and other needed services can make it impossible for PWAs
to live in the community.
Obstacles to Increasing PWA Housing Options
Developing community-based residences for PWAs is complicated by the lack of
capital to establish facilities, by the absence of funding mechanisms to
sustain them, and by the difficulty of serving PWAs with special needs.
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- 10 -
In the early 1980s, the federal Health Resources and-Services Administration
funded:.demonstration~projects designed to develop systems of care in cities
hardest hit:by the epidemic. ~These funds helped found many residential
agencies in cities. most affectedin the early years of AIDS. But now scarce
HRSA dollars must be spread ove-r~more cities as the epidemic spreads. Next
year, more than 80 percent-of new eases diagnosed are expected to occur
outside of the New York ~and San Francisco metropolitan areas, where early
cases and HRSA dollars were concentrated. For many cities and states with low
or moderate AIDS incidence rates, community-based agencies must be established
quickly, and it is unlikely that HRSA funding will increase commensurate with
the need.
Even after residential agencies are operating, their financial stability is
undermined by the unwillingness of private and public payers to reimburse them
for their services. - Most private insurance coverage is limited to care
delivered in acute care, nursing, or clinic facilities and in some cases by
visiting nurses. Medicaid coverage is similarly limited. Although the
federal government has established a Medicaid waiver that permits states to
purchase care for PWAs in alternative settings if that care would be less
expensive than care in a nursing facility, the main costs of residential
services- -room and board- -are not eligible for reimbursement.
Finally, many populations of PWAs cannot be served by the basic residences
that have been dev~loped. Intravenous drug users often cannot be placed in
facilities that do not offer specialized care for the problems of substance
abuse. In some cases, intravenous drug users remain hospitalized for up to
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- 11 -
five months longer than necessary because there are no sub-acute facilities
that can serve them. In addition, women and children, especially infants, are
often difficult to place because the agencies designed as residences for adult
males are unwilling to accept them. Significantly, the epidemiologic trends
in AIDS suggest that these populations will be increasing in the future.
Cases among intravenous drug users, women, and children are rising, while the
number of cases among gay or bisexual men is stabilizing or falling.
H.R.3423 is an appropriate mechanism for addressing many of these problems.
Its flexible grants will support agencies that need start-up funding, as well
as established agencies that need operating funds because they cannot get
reimbursement from clients or their insurers. In addition, the availability
of new funds may enable existing facilities to develop specialized services.
Services to Infants and Children
AHA recommends that the bill be broadened to address problems faced by infants
and children with AIDS, which often parallel those of adult PWAs: long-term
residence in acute care hospitals because there is nowhere else to go. For
many children, the situation is complicated by their being born with
compromised health due to their mothers' drug addiction. The substance abuse
problems of many of the mothers prevent them from being able to care for
thesechildren in a home onvironment, yet legal barriers often preclude
placement of these children in foster homes.
H.R.3423 could be a valuable vehicle to address serious problems such as this,
and we encourage the Committee to set aside a special fund for pediatric
facilities.
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Conclusion
The AIDS Housing Opportunity Act will help create and support community-based
residences for PWAs that are vital to providing an appropriate level of care.
In doing so, the bill will enhance the quality of life of persons living with
AIDS and will relieve some of the cost burden borne by providers and public
and private payers. The bill is designed flexibly to provide grants for
community-based agencies to expand their services to meet the needs of
specialized-populations, such as intravenous drug users, women, and children.
Although- those grants will not finance care on an ongoing basis, they will
provide much-needed assistance to private entities and local governments
struggling to get a network of services in place to cope with the AIDS crisis.
AHA strongly supports H.R.3~23 and urges Congress to consider it as. amendment
to the Omnibus Housing Bill.
Thank you for this opportunity to present our views.
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REMARKS TO THE SUBCOMMITTEE ON HOUSING & COMMUNITY DEVELOPMENT
OF THE U. S. HOUSE OF REPRESENTATIVES
JIM DAVIS, for the PWA HOUSING COMMITTEE OF ACT UP/New York
(AIDS COALITION TO UNLEASH POWER) Panel # 4
MARCH 21, 1990
~ICI UP
DEMAND HUU~M"
FOR H0M~ PEOPLE
UVIHG WITh AIDS
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314
Were now entering the tenth year of the AIDS
Crisis.
Although sexual transmission of the HIV virus
has declined among gay men, it is still spreading
rapidly through needle sharing, heterosexual transmission,
and mother to child transmission. As the epidemic evolves,
AIDS is tending to become increasingly a disease of people
of color, of the poor, of the uninsured, and of the poorly
housed and homeless.
According to the Center for Disease Control's narrow
definition of AIDS (not the entire spectrum of HIV illness),
as of January 1990 there have been 121,645 diagnosis of AIDS
in America.. .49,000 of htese are presently living. By the
end of 1992, the CDC projects that this number of people
living with AIDS will more than double to lO2,OOO~
The incubation period for the virus developing into
the "full blown" disease can be as long as ten years.
And, in addition to the above numbers of already
"diagnosed" (with "full blown AIDS") people, the CDC
estimates that 1,000,000 to 1,500,000 Americans are now
non-symptomatic, but infected with the HIV virus.
The picket sign behind me shows New York City's most
violent "shelter" for single men, Fort Washington, in the
Bronx. (I happened to witness the murder of a medically
frail man, by four guards, at the East Third Street Men's
Shelter, in Manhattan, two summers ago.) Conditions are
filthy, toilets and showers are inadequate, and people with
infectious diseases and suppressed immune systems sleep
crowded together, giving each other tuberculosis and other
diseases.
On the coldest night of this winter, the inhabitants
of this "shelter" were locked out. Why? The City was on
a never-before seen cleaning binge, to make the "shelter"
look better for the visit of the National AIDS Commission,
the following day. We estimate that about 80% of the
people in htis "shelter" are at least HIV positive, some
of whom have HIV illness, and some of whom have CDC-AIDS.
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315
A member of the Na~iona1 AIDS Commission commented
that the tightly packed beds in this "shelter"
reminded her of the Names Project AIDS Quilt.
IN NEW YORK CITY, THERE ARE PRESENTLY BETWEEN
9,000 AND 11,000 HOMELESS PEOPLE LIVING WITH AIDS.
For the entire state of New York, the number is
about 12,000. By 1993, there will be an incredible
mass of about 30,000 homeless people living with
AIDS in the state.
The crisis of homeless people with AIDS is
being neglected at all levels of government:
A. New York City government is increasingly
making its Division of AIDS Services (DAS)
into an obstacle course for applicants with
AIDS and HIV illnesses. . . leaving over ninety
percent of the homeless ones on the streets,
in the parks, in the subway tunnels, and in
the general so-called "shelters".
Instead of giving the most medically
vulnerable of the homeless-- priority-- in
our big `ten year housing plan'... the beauro-
crats are clinging to the unhealthy and unsafe
congregate shelter concept, instead.
There are presently only 140 units of
"scattered-site" housing (with services)
presently operating... which is what most
PWA's need.
B. New York State government is using housing and
residential medical facility models (on paper--
almost nothing's operating yet) which were
designed for geriatric and mentally ill popula-
tions... instead of designing and adequ~tely
funding housing and facility models to respond
to the specific facts of AIDS.
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316
C. Federal government has not yet done anything
to help house people with AIDS.
In 1988, Congressman Jack Kemp of New
York state voted against the McKlnney Act--
and it was defeated.
In 1989, the McKinney Act passed. Then
the Department of Housing & Urban Development
under Secretary Kemp, sabotaged the Act's
potential to fund two projects (one in Calif-
oria, and one in New York City) tailored for
the specific needs of people living with AIDS,
by the issuance of an internam legal memo. This
refusal to fund projects for PWA's was in spite
of the surplus in the program, due to lack of
enough applications. Congressman McKinney can't
be here to protest, because he died, of AIDS.
On December 18, 1989, the PWA Housing
Committee of ACT UP/N.Y. met with H.U.D. Under-
secretary Anna Kondratas and her staff, about
the overall homelessness-AIDS crisis. For every
concern or question, we received back a "reason"
why action was "impossible", supposedly due to
the law. There cannot be even a single demonstration
project this year, from discretionary money, due
to that money's having been eliminated by the H.U.D.
Reform Act, in the wake of the scandal.
The most important fact we verified at the
meeting was the total lack of leadership at H.U.D.,
to create and propose new programs to meet this
need. Our follow-up letter, seeking to continue
the dialogue, was not even answered.
One specific change we need at H.U.D. is
to revise the `Priority System' for placement in
H.U.D.-funded apartments in local Housing Author-
ities.
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317
The present system (according to officials
of the New York City Housing Authority) does not
recognise that the specific nature of Aquired
Immune Defficiency Syndrome includes the fact
that being homeless may kill a person by expos-
ure to opportunistic infections (which other
people would have immunity to) and the bias-
related violence against people perceived as
having HIV illness/AIDS, in the "shelters'.
Also, the individual applicant's problems
of homelessness, and medical emergency/disability
are not considered in a compounded manner; either
problem will get one the same priority as given
to the person who has both problems. To a person
with AIDS, the two problems not only add to each
other, but the combination is synergistic... the
total is more than the simple addition of the
parts... you can die~from being homeless with AIDS.
Therefor, not only should H.U.D. and local
Housing Authoritiesestablish a "super-medical-
emergency" category for AIDS (a category above
that of medical conditions which are not hf e-
threatening in relation to conditions in the
"shelters")... but the housing applicant's several
problems should be considered additively: People
with AIDS and homeless should be priority "hA",
people without AIDS but having three "priority one"
situations should be "lB", those having two "prior-
ity one" problems should be "lC", etc.
Until this reform is enacted, the `priority
placement system' will be insensitive to the hf e-
shortening combination of AIDS and homehessness.
27-986 0 - 90 - 11
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318
Comments on the AIDS Housing Opportunities Act - H.R. 3423:
1. It's a start. This and any' further AIDS housing
policy should be developed by Congress with full
consultation with individuals and groups of people
living with AIDS, AIDS service organisations and
advocacy organisations, and AIDS activist organisa-
tions. These are the "experts".
2. Section 8 money is often returned unspent by N.Y.C.
applicants, due to the miniscule apartment vacancy
rate, and the higher than average local rents. This
funding would therefor, tend to be skewed against
the big cities with the bulk of the homeless PWA
population... especially as the epidemic evolves.
So, any unspent money in this part of the AIDS
Housing Opportunities Act should be made available
for the part of the Act funding development and
operation of `permanent housing'.
3. SRO's: Single Room Occupancy hotels, without individual
kitchens and bathrooms, ai~e not suitable as (permanent)
`housing'.
Due to the nature of AIDS... sometimes including
chronic diarrhea, one person--one bathroom is the
required standard. PWA's also need individual refridger-
ators to store medications and special foods intended to
counteract the wasting syndroms. Even if there's some
sort of group kitchen, there still must be an individual
kitchen. Which is then not an SRO, but we're talking
about an apartment (studio, or larger, depending on how
many family members may be included).
So, for `permanent housing', the apartment with
visiting case manager and visiting home health care
service if required, is the minimum standard.
Therefor, this "SRO" money should be shifted to
the "permanent housing" section of the bill.
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319
4. Community Residences (permenent housing; interpreted
to mean individual apartments, scattered in many
buildings housing mostly non-PWA's, or possibly in
clustered buildings):
THIS SECTION IS THE TYPE OF THING THAT THE
OVERWHELHING MAJORITY OF PEOPLE LIVING WITH AIDS NEED.
The funding level here needs to be determined
by the scale of the actual need. Also the program
must be implimented in a simple enough manner so
that community_based_Organisations (CBO's) can actually
apply for and receive the funds. The HcKinney Act
program, as I mentioned, did not receive enough
applications-- certainly not due to lack of need.
So, H.U.D. needs some Congressional guidance to make
sure that in it's implimentation, the McDermott-
Pelosi-Schumer Act will be usable.
The PWA Housing Committee of ACT UP/N.Y. is available
to consult with any member of Congress on this or any future
legislation reagrding housing for people living with AIDS.
We can be~ contacted through ACT UP, 496-A Hudson St.,
Suite G-4, New York, N. Y. 10014... telephone 212-989-1114,
fax number 989-1797.
Attached to this testimony, is a copy of a recent
article from the Amsterdam News, about the placing of people
with AIDS in shelters, and a copy of a photograph from the
People With AIDS Coalition Newsline.
Thank you.
PAGENO="0324"
t'41:VI VOIlE
~tni~t~rôwn Netuz
AIDS. plan is `déath~senténce'
9 By CAROLYN A. BUTI~S
~ Special to AmNews .. A recen~t New York Times ar-
cc Angry AIDS and homeless tide noted that there has been
~ people advocates have charged an increase in tuberculosis and
that Mayor David Dinkina other communicable diseases in
< reneged on hiS campaign promise the slielterpopulation,.diseases
to scrap a proposal by Edward that would be life threatening to
~ Koch to house homeless AIDS H1V.positive people who have
~ victims in shelters and called weakened immune systems.
~ his decision to approve the plan -Davis said a study done last
a death sentence. year estimated that an over-
~ "It's a death penalty. There whelming 8,000 to 11,000 home-
~ will be almost no medical sel'v- less people are either HIV posi.
Z ices. People will be sleeping tive or have AIDS. Davis said
< close together. giving each that many hospitals refuse to
other tuberculosis and (other diagnose homeless people with
~ illñ~ssts),~' said Jim Davi~ media AIDS because they~cannot dis.
coordinator for ACT UP (AIDS charge them.
~ Coalition To Unleash Power). Although Davis acknow.
Davis said he opposes the plan ledges that AIDS among the
because a shelter doesn't have homeless is a growing problem.,
the proper resources to treat the city must resolve, he feels
AIDS victims, the only answer is to-provide
Despite last Monday's bitingly permanent housing so they can
cold weather ACT UP held a qualify for medicaid and other
demonstration in front of the health benefits. He* said *ACT
Bellevue Men's Shelter on 1st UP had proposed a scatter hou-
Avenue, which was chosen as a -sing plan which Dinkins sup'
test site for the program. ported before he was elected
Dinkins insists that his plan.is mayor thatwould cost $15 less
different than former Mayor than placing. a person . in the
Koch's proposal because people shelter.
with AIDS will only be assigned Virginia Shulbert, director of
to the fourth floor of the Bel- the Coalition for the Homeless,
levue Men's Shelter until per- said her organization is bring.
manent housing is found for ing a class action suit against
them, the city to f ce t to p ovide
Dinkins also cl~iims lus plan is. safe environment for homeless
safer because it would be people with AIDS. Shulbert
limited to one site and carefully said, "We believe a shelter is
monitored by the United Hospi. totally inappropriate and in-
tel Fund for effectiveness while humane place for a person with
Koch's plan called for the use of *AIDS."
several different shelters and of-
fered less of a support system.
"It's as if we haven't even
elected a new person at all,"
said Davis, who feels Dizikins
hasn't taken a strong stance on
issues affecting AIDS victims.
Davis said Dinkins has refused
to meet with ACT UP and other
groups to discuss other
metheds of dealing with home-
less people who have AIDS.
"I think he never really un-
derstood the gravity of- the
AIDS crisis. I think he's been
reading speeches by one or two
aides who understand it without
understanding the speeches
himself," said Davis. He added
of Dinkins naiveti, "I don't
think he knows that he is going
to go down in history as the
mayor that lost several Black
and Latino neighborhoods to
AIDS."
"They will get no housing, no
medical care and their health
will run down as fast as possible
and they'll die as fast as pos-
sible," said Davis,
WEDNESDAYS ~~--*.
PWA Housing Corrunittee, 7:30 p.m.
206 Ninth Ave. (23 St.), Apt. # 1N2
PSJA FIIYJSICG Ci8IRITIEE:
Eric Saayer
212 3L4 5672
Jim Davis
201 320 9028
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Photo by Gerri Wells
-21 - PWA COALITION NEWSLINE
March 1990, lssue #53
PAGENO="0326"
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M~R 16 90 11:31 HUD HOUSING/HF HOUSING 659 P02
1~NOV 1989
U.S. DEPARTMENT OF HOURNG AND URBAN DEVELOPMENT
~ WASHINGTON, D.C. 20410-4500
-;
OFFICEOF UfEMLcOUN~Ft.
MEMORANDUM FOR: C. Austin Fitts, Assistant Secretary
for Housing-Federal Housing Commissioner, H
Cordon H. Mansfield, Assistant Secretary-
Designate for Fair Housing and Equal
Opportunity, SX
/ ~ rr~NK KEATING
FROM: Prank Reating, General Counsel, G
SUBJECT: Section 202 Projects for the Elderly and Handicapped --
Persons WIth AIDS
The purpose of this memorandum is to expand upon previous
legal advice provided by the Office of General Counsel with
regard to the eligibility of persons with AIDS for admission to
projects for the elderly and handicapped assisted under
section 202 of the Housing Act of 1959, as amended.
Specifically, I refer to the September 16, 1988 memorandum
captioned "Housing for Independent People, Project No.
12l-EH3I6," from Associate General Counsel Robert S. Renison to
Assistant Secretary for Housing Thomas T. Demery, and my
August 23, 1989, memorandum to Regional Administrator Robert .T.
DeMonte, Region IX, captioned as above. Both of those memoranda
concluded that proposed section 202 projects intended for
occupancy by persons with AIDS,: for which AIDS would be the
qualifying handicapping condition, were not legally approvable.
While these conclusions are technically correct, subsequent
discussions with members of your staff and the large group
discussion at the August 25 meeting chaired by Mr. Casey indicate
that further elaboration of our legal views is in order.
Section 202(d) (4) defines a person's physical handicap
-thereunder to mean
"an impairment which (A) is expected to be of long-continued
and indefinite duration, (B) substantially impedes his
ability to live independently, and (C) is of such a nature
that such ability could be~ improved by more suitable housing
conditions."
In order to meet statutory~ eligibility on the basis of
physical handicap, a person must have an impairment meeting all
three conditions. The two memoranda cited above pointed to the
legislative history of section 202 which focused on impairments
(e.g., heart conditions, arthritis, rheumatism, vision
impairment, back or spinal impairment, paralysis) which, although
severe and chronic, permit functioning on a relatively stable
level for a substantial period of time. The analysis in those
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MflR 16 `99 11:32 HUD HOUSING/MF HOUSING 659 P93
2
memoranda juxtaposed this type of impairment against that of
degenerat~ive conditions,~including not only AIDS but conditions
~suchascancer,~emPhysSma, multiple sclerosis, and muscular
dystrophy. In the latter case, our opinions attempted to address
the fit between such degeneration and ~the statutory requirements
that the impairment ~ be expected to be of long-continued and
indefinite duration ~ substantially impede the person's ability
to live independently.
At the August 25 meeting, Housing staff stated that some
persons with functional limitations caused by degenerative
conditions have been admitted to section 202 projects in the
past. Such persons have not had any other handicapping condition
(e.g., developmental disability such as cerebral palsy) which
resulted in the impairment making them eligible. Rather, Housing
staff reported that their physical handicap was such as to
constitute a "mobilFty impairment." It is not known whether any
such persons admitted to date without any other qualifying
handicap suffer the qualifying impairment as the result of AIDS.
We believe such admission policies are legal ~nd within the
statutory definition of physical handicap. However, in this
connection I would like to restate the terminological
clarification recommended in the cited memorandum from
Mr. Kenison to Assistant Secretary Demery. There, he stated that
defining physical handicap in terms of "mobility impairment" is
misleading; a moremea urate criterion would b
p sical irn airment i aired sensory, manua , or
speaking abilities, which results in a unc ~on n in
es an use o_ * ee * of Uniform Federal
Accessibi 1 y Standards. This definition equates with the
statutory requirement under section 202(d) (4) that the impairment
must substantially impede a person's ability to live
independently.*
Under this test, any person whose impairment is attributable
to a degenerative condition, such as AIDS or cancer, is eligible
to be admitted to a section 202 project where the impairment
"results in a functional limitation in access to and use of a
building." These physical limitations, to the maximum extent
practicable, should be based on objective, measurable,
determinative criteria.
Of course, the criteria are subject to the statutory
requisite that the impairment is expected to beof long-continued
and indefinite duration. We do not believe that this 1eqIaireiuant
has the effect of excluding all persons with AIDS from
~
First, notwithstanding the section 202 legislative history's
emphasis on longstanding chronic conditions, the words of the
statute are relative and not temporally specific. Second, the
statutory provisions governing handicap, as pertinent, are
virtually unchanged since the 1961 amendments adding coverage for
the handicapped. In this sense, the statute precedes even
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MAR 16 `90 11:33 HUD HOUSING/MF HOUSING 659 P04
discovery of the AIDS virus, but not of other debilitating
conditions. Third, we have found nothing in the 30-year
legislative history of the program expressly rejecting or
otherwise tending to preclude participation by persons whose
impairments are of a degenerating nature. hus, so long as the
impairment "res~ilts in~afunctional limLtntion in access to an
s of a building," we,do not believe that the categgry of
~mpaJ~e e. ., AIDS, cancer) mili~a~tes in~g~ib1lt~y of ari~
~e-r-~on_wjth AIDS or with cancler nr with nrn~tip1esg~o~j~or
with any other degenerative conditio re the irncair s
r ~e e s ~ i a functional limitation in access
t_p~nd use of a buil~,ing. Further, while it is evident t a his
opinion extends to all of the debilitating conditions mentioned,
it is in specific response to questions about AIDS. Medical
information in this area is still so new and is developing so
swiftly that we believe it would be very difficult to assert that
no- functionally limited persons with AIDS have an impairment
which is expected to be of long-continued and indefinite
duration, just as it would seem difficult to conclude that in al].
cases Of functional limitation such an impairment is "expected to
be of long-continued and indefinite duration."
As a final matter of clarification, we note that proposals
were submitted in the pending section 202 funding round for
handicapped exc o
perso AIDS. We believe these proposals present
e~-i-~.ibility problems gf a different order under section 202.
iursuant to case iaw.L' section 202 projects may be limited only
to four classes of occu an s: T~rrei~fiTI~
d sab e , the chronicall mental]. ill and t h sica y
~ndicapped', w~jck1.a.s~çate~~y includ~ s with AIDS and
other persons with conditions of a d n tin nature, as well
a ot er ersons w ndicap uch as ara ysis or
visual_impairments. Accordingly, a project limited exc iiiiVeTI~'
t~~itTh~],ar physical handicap would not in general be legal~,y"
approvable.-! -
.ii' cker v. Q~j~,8'nai_fl'rith Housin2 Development Fund
Co., Inc.; 796 F.2d 52 (2d Cir. 1986), Knutzen v. Eben Ezer
Lutheran Housing Center, 815 F.2d 1343 (10th Cir, l987f~~
~il This opinion does not address a related but separate
question currently being explored by our staffs, namely, whether
a roect for one eligible
chronically mentaily~i 1, could limit admissions to persOns_in
that category who also have a h p÷_sucb as
J~ID~, w ic er con ition mi ht or mi ht not have reac~ the
a unc iona limitation re u ection 202
sta~ have expressed concern about the
compatibility of such an arrangement under section 504 of the
Rehabilitation Act of 1973.
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MAR 16 `90 11:33 HUD HOIJSING/MF HOUSING 659 P05
4
The principles and conclusions of this memorandum apply with
equal force to the program of permanent housing for handicapped
homeless purposes authorized under Subtitle C of the Stewart B.
McKinn»=y BomelebS Assistance Act. Section 422(2) of that Act
defines the term "handicap~ to mean "an 1ndj~jdual who is
handicapped within the meaning of section 202 of the Housing Act
of 1959."
PAGENO="0330"
326
M~P 21 `90 11:40 BO~L~N PAGE.05
TH~ CITY OF NEW YORK
Ofr,ct 0~ rHC MAYOC
NEwYORIc, N.Y. 0007
Narch 20, 1990
Hon. Jim McDermott
Member of Congress
1107 Longworth House
Office Building
Washington, D.C. 20515
Dear Congressman McDermott:
I write to express my strong support for the "AIDS Housing Opportunity Act."
This bill provides long overdue assistance to address the urgent and unique
housing needs of people with Acquired Immune Deficiency Syndrome and related
illnesses.
The lack of housing alternatives is one of the most critical probless facing
New York City in its efforts to provide services to people with AIDS and is
a major cause of inappropriately prolonged hospitalization.
New York City's Health Systems Agency estimates that in CFY 1990, 2,700 HIV*
ill persons who are homeless will be discharged from hospitals. The
majority will require a residential setting where home care can be provided.
The City estimates that 1,355 beds will be needed in CFY 1990 and 1,700 in
1991
Meeting the need will be difficult. The AIDS Housing Opportunity Act is a
long awaited response by the Federal Government which provides cities, like
New York, with resources for humane and supportive environments for people
with AIDS and related illnesses.
This draft legislation would provide the necessary continuum of services to
people with AIDS. However, we believe the following general recommendations
will ensure that the bill will best serve the full range of people in need:
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M~R 21 `90 11:41 BOYLAN P~GE.0B
First, the programs under this bill will, quite properly, be available to a
broad spectrum of the HIV'ill population. To maximize the effectiveness of
limited resources, we believe that States and localities should be assured
the flexibility, within statutory parameters, to target services to sub-
populations of the HIV-ill according to local nceds.
Second, nearly all references are to individuals. We would like as many of
these programs as possible (excluding the SRO programs) to serve families,
which make up an increasingly significant portion of those we serve and
project to serve. Mowever, we do not favor a statutory minimum funding or
services requirement regarding families. Again, the emphasis should be on
allowing each locality to have the flexibility to meet its own needs.
Third, the bill provides that at least one Section 417 Short Term Demonstra-
tion grant target current substance abusers. More priority should be given
to this group and to former substance abusers. These individuals, and their
families, comprise a significant and growing proportion of the City's AIDS
caseload. We believe that one grant nationwide will be inadequate to pro-
vide the services needed by this population.
In gdditlon we offer the following recommendations in order to improve the
specific programs contained in the bill:
First, while we recognize the current budgetary constraints and we appreciate
the significance of this bill as the first Federal housing assistance
package directed to people with Acquired Immune Deficiency Syndrome, we
believe the amount authorized for all of the programs contained in the bill
should be increased.
Second, the bill severely restricts the availability of short-term housing
assistance. Eligibility for supported housing is limited to 60 days during
any 6-month period and eligibility for housing payments to 21 weeks in any
52-week period. We recommend that language be added to assure these
limitations will be imposed only when adequate alternative facilities are
available.
Third, it appears that funding for the programs is limited to states and
metropolitan area governments, with "metropolitan area" defined as the
Metropolitan Statistical Areas (liSA) used by the Federal Office of
Management and Budget. While we encourage the development of regional
planning, it is important to recognize that in most cases no functional
regional government exists. Consequently, we suggest that the list of
eligible applicants be amended to include municipal governments as well am
states and regions. Cities have had the most experience in developing
housing programs for people with AIDS and they should certainly be
able to utilize this new source of funds.
Fourth, we believe the Section 8 certificates provided by the bill must be
at least 15 years in term. We applaud your efforts to ensure that these
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M~R 21 `90 11:42 BOYLAN PAGE.07
certificates can be used as project based ~saist~nce in order to generate
the creation or improvesent of affordable housing units in those areas
where there is a housing shortage. However, the certificates will not
thduce owners to undertake new construction or significant rehabilitation
unless they are guaranteed for a long tore.
OD.ce again, I congratulate you and thank you for your efforts to enact this
~st critical legislation.
Sincerely,
David N. Dinkins
N A Y 0 2
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329
Fighting to Live:
Homeless People With AIDS
National Coalition for the Homeless
March 1990
PAGENO="0334"
330
Fighting to Live:
Homeless People With AIDS
Natioral Coalition for the Homeless
1 05 East 22nd Street
NewYork,NY 10010
1 621 Connecticut Avenue NW
Washington, D.C. 20009
PAGENO="0335"
331
Cover photo:
AIDA (Anger Into Direct Action), a direct action group of hoaeless
persons with HIV-related illness, leads the PWA contingent of the
October 1989 Housing Now! march in Washington.
Photo by Ellen Neipris, (c) 1990 Impact Visuals.
PAGENO="0336"
332
If you are to make policies, if you are to set
guidelines, then first you must come in the trenches.
You must come to the welfare center and see the madness.
You must call SSI and be put on hold. You must sit in
our clinics, live in our housing, and deal with the red
tape that we encounter every day. I doubt very much that
this will happen. Still, let the people who make the
decisions talk to us. Let them know that we still feel,
still hope, still pray, not only for a cure, but to be
treated like human beings, no matter the sexual
orientation, race, or drug history. Let them know that
if you keep telling someone that they are less than
others, they will start to believe that. We with AIDS
are not that, and we should not be made to feel like it
either.
Wayne Phillips, Homeless PWA
PAGENO="0337"
333
Acknowledgements
The National Coalition for the Homeless thanks the many persons
living with HIV, advocates, providers and government officials who
provided information for this report.
The National Coalition also thanks Virginia Shubert (AIDS Project
Director), Charles King (AIDS Project Staff Attorney) and Diane
Curtis (AIDS Project Research Assistant), the principal authors of
this report.
1
PAGENO="0338"
334
Table of Contents
Executive Summary
Introduction
An Illness of Poverty iv
Failure to Provide ~Educatiori and S~rvices for Homeless
Persons v
A Lack of Awareness . vi
Discrimination and Community Resistance vii
Homeless Youth with HIV viii
Unmet Housing Needs ix
Recommendations xii
Introduction 1
The Disproportionate Effect of AIDS on the Poor . . . . 2
The Struggle to Survive Without a Home 6
The Failure to Recognize the Needs of Homeless Persons
Living with HIV 8
Housing Programs for Persons Living with HIV 12
The Absence of a Federal Response or Plan 15
Site Selection and Methodology . . 18
Community Profiles
Baltimore, Maryland 19
Birmingham, Alabama 22
Chicago, Illinois 25
Cincinnati, Ohio 29
Dallas, Texas 32
Delmarva Peninsula 37
Denver, Colorado 40
Detroit, Michigan 43
Los Angeles, California 46
Maine 50
Manchester, New Hampshire 53
Miami, Florida 56
Nashville, Tennessee 59
Newark, New Jersey 62
New Haven, Connecticut 65
New Orleans, Louisiana 68
New York, New York 71
North Dakota 81
Phoenix, Arizona 83
Pittsburgh, Pennsylvania 87
Portland, Oregon 90
Providence, Rhode Island 93
Richmond, Virginia 95
St. Louis, Missouri 98
San Francisco, California 101
Seattle, Washington 106
1].
PAGENO="0339"
335
Executive Bthnmary
Introduction
AIDS and homelessness have become powerful co-factors.
Service providers, public officials, and advocates across the
country state that the lack of decent, appropriate housing is a
critical problem facing the growing numbers of persons in their
communities who are living with Acquired Immune Deficiency Syndrome
("AIDS") and other illnesses caused by the Human Immunodeficiency
Virus ("HIV").
Over the last year, the AIDS Project of the National Coalition
for the Homeless surveyed shelter providers, AIDS organizations,
homeless health care workers and public officials in 26 communities
and states around the nation to obtain a grassroots assessment of
the current and projected need for housing and related support
services for homeless people with HIV-related illnesses, and to
look at model public and private programs created to meet the
special needs of homeless men, women, children and families living
with AIDS.
In all parts of the country, available housing and services
were found to fall short of the need for appropriate residential
care for the thousands of persons who have been made homeless by
HIV-related illnesses or whose struggle to survive on the streets
has been further worsened by AIDS.
12~1
PAGENO="0340"
336
An Illness of Pover~y
Across the country, AIDS strikes disproportionately at persons
already at the edge economically, and at persons who are targets
of pre-existing discrimination in housing and the delivery of
medical care and other services. In particular, AIDS has hit
hardest persons of color, members of the gay community, IV drug
users and homeless youth. Episodic and increasingly debilitating
by nature, HIV-related illness often causes homelessness, as
fatigue, repeated illness and periodic hospitalizations result
first in the loss of employment and then in a loss of housing.
Survey respondents also cited the low level of Social Security
disability benefits or local income maintenance (typically less
than $500 per month for persons unable to work due to HIV-related
illness), as a significant contributing factor in homelessness
among people with AIDS. Such a monthly income is insufficient to
pay rent alone in most communities, much less to meet other needs.
Communities hardest hit by poverty and drug addiction are also
being devastated by HIV. In Newark, New Jersey, where one-third
of the city's citizens live at or below the poverty line,
approximately 20% of the population is estimated to be HIV-
seropositive. The seropositivity rate among IV drug users is
already over 30% in Niami, Florida, which ranks highest in the
nation in the rate of new infections. Neither one of these
communities has committed any funds to the housing or care of
persons with HIV, leaving their poorest members to struggle alone.
In Newark, one homeless man with HIV-related illness discharged
iv
PAGENO="0341"
337
from a city hospital died shortly thereafter on the street three
blocks away.
Failure to Provide Education and Services for Homeless Persons
Among persons who are already homeless, there has been a
shortage of effective education throughout the country, leading to
tragic, predictable, and dramatic increases in HIV-seropositivity.
In Los Angeles, which has a homeless population of 50,000 and over
8000 reported cases of CDC-defined AIDS, a July 1989 survey showed
that over 70% of shelters surveyed provided no AIDS-related
services or education. A Los Angeles homeless health care provider
observed that "shelter staff do not seem to have thought about the
idea that there are probably already PWA5 [people with AIDS] within
their shelter population who are not disclosing their diagnosis
because of fear." In St. Louis, Missouri, some shelter operators
suggested that HIV-seropositive residents "wear badges so we know
to stay away from them."
In fact, many shelters around the country exclude HIV
seropositive persons, despite the fact that there is no evidence
of transmission of MIV through casual contact. In Birmingham,
Alabama, for example, some people with AIDS -- who are unable to
obtain shelter because their illness is known -- are living in
abandoned railroad cars. In New York, hundreds of people with AIDS
live in subway stations and tunnels. The hardship and risks of
life under such conditions take an irreparable toll on all homeless
persons. For those who are HIV-ill, the repeated secondary
V
PAGENO="0342"
338
infections and the stress inherent in life on the streets or in
disease-ridden shelters are life-threatening.
A Lack of Awareness
Denial is one major reason why the needs of homeless persons
with AIDS are not being met. Many public officials and homeless
providers and advocates have failed or refused to acknowledge that
AIDS is a problem for homeless people in their community. One
Detroit official, failing to perceive `doubling up" as a housing
problem, stated that Detroit was not seeing a housing problem for
people with HIV because they are able to stay with friends, lovers
or family. In Cincinnati, shelter providers were reported to be
scared to deal with the problem of AIDS and one provider admitted
that they were intentionally dragging their feet on the issue until
government handed down a mandate telling them they could not reject
people with AIDS.
The incorrect perception in Manchester, New Hampshire, that
AIDS is a big city problem only was cited as the major reason for
a total lack of health or social services for persons with HIV in
that community. As a result, most people have to leave New
Hampshire to get care. Denial was cited as a chief problem by a
consortium of advocates in Pittsburgh, who are meeting to produce
a study on homelessness and AIDS in their community. One advocate
in St. Louis expressed the opinion that only when "enough" PWAs
become homeless would the city begin to address the problem
responsibly.
vi
PAGENO="0343"
339
With no housing or services available, many homeless persons
with HIV are afraid to identify themselves as HIV-seropositiVe and
seek health care and other necessary services. In Birmingham, the
absence of anonymous testing facilities means that many homeless
persons, fearful of being excluded even from emergency shelter, may
not seek testing or care. High tuberculosis rates among the
homeless in many communities, such as Birmingham, Dallas and New
York, are seen as indicative of concomitant rates of HIV infection.
Denial will only postpone dealing with this problem -- at the
tragic expense of those in need now.
Discrimination and Community ~esiaii~-~
Community resistance and widespread discrimination -- in the
form of both homophobia and anti-homeless sentiment -- have also
prevented many communities from providing adequate health and
housing solutions. In Delaware, one non-profit group struggled
against community opposition for over two years before opening a
residence for people with AIDS. "NIMBY" (Not In My Back Yard) was
cited as a problem in almost all communi~ties surveyed. In New
Orleans, advocates faced a political environmentwhere "AIDS is a
hush-hush thing." And in Baltimore, providers described having to
`slip people with AIDS into the neighborhood' of a supportive
residence.
Homeless individuals with HIV also face discrimination. One
shelter manager in Manchester described the difficulties faced by
one client who, once he had received a public housing assignment,
vii
PAGENO="0344"
340
was forced to wait to move in because the apartment was held up by
fictitious delays created in the hopes that the client would die
before the housing became available.
Homeless Youth with HIV
Several cities reported dramatic increases in the number of
homeless adolescents with HIV or at risk of HIV infection.
Significant existing populations were identified in Los Angeles,
Denver and New York in particular. Typically "throwaways" who were
forced to leave home due to physical or sexual abuse, these youth
exist outside of any formal system, and never receive services of
any kind. Most of these young people are forced into prostitution,
or `survival sex," in order to meet a minimum of their basic needs
of food and shelter.
Absence of Drug Treatment
Virtually nothing is being done to provide drug treatment for
those in need in any community surveyed. In New Orleans there are
no Medicaid-reimbursable inpatient facilities for drug users
seeking treatment. In Maine, there are no methadone or
detoxification programs in the entire state.
Access to housing is also most limited for active and former
substance abusers, the fastest-growing group of HIV seropositive
persons, since they are explicitly excluded from most federal and
local housing programs. This creates a tragic irony for drug
addicted persons who face long waiting periods for treatment which
viii
PAGENO="0345"
341
is simply not available for most who request it throughout the
country.
Thus, although IV drug users comprise the group with the
fastest growing rate of HIV infection, they are virtually unable
to obtain housing or treatment anywhere in the country.
Unmet Housing Needs
As of January 31, 1999, some 121,645 Americans had been
diagnosed with AIDS; more than 50% of these persons -- 72,590 --
have died. The Centers for Disease Control estimate that 1 - 1.5
million Americans are infected with HIV (the virus that causes
AIDS), and predicts that almost 500,000 will have died or
progressed to later stages of the disease by 1992. No one knows
the actual number of homeless or near-homeless persons with AIDS,
although identified populations were found to exist in each of the
26 communities and states surveyed.
HIV operates to destroy essential elements of the immune
system, leaving the seropositive person increasingly vulnerable to
infectious disease. The majority of persons whose immune systems
are impaired by HIV can live independently, but require safe
housing which protects them from exposure to infectious disease,
enables them t~ get adequate rest and meet special nutritional
needs, and provides for access to support services and home help
when necessary.
Homeless persons with HIV-related illness languish in hospital
beds simply because they have no place to go. Others are `dumped'
ix
PAGENO="0346"
342
from hospitals onto the streets, or into congregate shelters where
infectious disease is rampant. In these settings,discrimination
and even, violence towards persons who are HIV seropositive is
common.
In ~ew York City alone, it is conservatively estimated that
there-are at least 10,000 person~with HI'V-relatedil'lness who are
now without homes, as experts cite a 20-30% seropositivity rate
among the city's 70-90,000 homeless persons. Yet, -some ten years
into the epidemic, there are less thah 250 units of supportive
- - - housing forTpeople with AIDS.
In Delaware, it is anticipated that as many as 30% of the
5,000 people known to be HIV seropositive will require housing
assistance in the next few years. A private group is currently
providing the only available housing for people with AIDS; they
are able to meet only about 50% of the current need.
One advocate reports that, in the Delmarva Peninsula, most
homeless persons with HIV-related Lllness struggle to survive in
emergency shelters where they face discrimination, are not allowed
to remain inside during the day, and must leave after their stay
exceeds the typical 30-60 day limit. He observed, "Service to
persons with AIDS who are homeless is the great need among the
homeless least adequately met."
In Richmond, Virginia, there are currently only 3 units of
designated housing for homeless persons with AIDS, provided by a
private, non-profit group. A July 1989 report, issued by an AIDS
task force led by the United Way and the American Red Cross, lists
x
PAGENO="0347"
343
housing for people with HIV-related illness among the most serious
unmet needs in the community and calls for housing assistance, home
health care and support services, and development of appropriate
non-medical residential care facilities for adults, adolescents and
children with HIV-illness.
The situation for homeless persons with HIV-related illness
in Dallas was described as "bleak" both by those who work with
persons with AIDS and those who work with the homeless. A group
that provides services to people with AIDS in Dallas is seeing an
increasing number of homeless persons seeking assistance, and
describes appropriate housing as "if not the most difficult, then
the most chronic problem faced with every client served." It is
estimated that there will be at least 1500 to 1700 new cases of
AIDS diagnosed in Dallas in 1990, and that 20% of these persons
will be homeless or will become homeless as a result of their
illness.
One Chicago group that provides advocacy and referrals for
indigent people with AIDS receives 15 to 20 new referrals a month,
and reports that it is impossible "to provide the necessary and
proper services for homeless people with AIDS" with existing
resources in that city. Such housing as is available is provided
by private groups with only limited government support, and no
residential care facility exists for persons in need of supportive
housing but not hospitalization. For groups that provides case
management services to people with HIV-related illness, appropriate
housing is an "acute need," which is becoming much worse, and the
xi
PAGENO="0348"
344
problem of securing housing is one of the most difficult issues
faced in case management.
Even San Francisco, which has made perhaps the most ambitious
and comprehensive effort to house persons with AIDS, is not meeting
current need. San Francisco has just over 100 beds in programs for
homeless people with HIV illness, but advocates estimate that there
ar~e currently 700 persons with Ely-related illness in the barrack
shelters or on the streets in San Francisco, and report that "while
the city has made a good faith effort, there is much to be done."
Recommendations
While discrimination and community resistance have been a
problem in developing housing and services for people with AIDS,
lack of funding was the most significant barrier cited in every
community surveyed. To date, almost all funding for the care of
people with HIV has come from private sources. Local public
spending on AIDS services is minimal -- from 14 cents per resident
in Texas to about $3 in California and New York. In many areas of
the country there are no state or local monies for care.
Excellent models do exist for housing persons with Ely-related
illness appropriately and cost-effectively. Cities such as San
Frarmcisco.and Seattle have established systems in which the public
sector and private non-profit groups work together to provide
rental assistance, housing referrals, and supportive housing for
persons at all points along the continuum of Ely-related illness.
In other areas, private groups have stepped in to create supportive
xii
PAGENO="0349"
345
living arrangements for people with AIDS. Stephen Swain House, an
8-unit group home providing housing, meals and other services to
homeless persons with AIDS in Delaware, was opened this summer by
the People With AIDS Settlement Project, an initiative of Delaware
Lesbian and Gay Health Advocates, a non-profit group. Model
programs for group and independent living have been operated under
contract with New York City by the AIDS Resource Center, a non-
profit group, for five years. Supportive housing is provided by
ARC for $68 to $100 a day, compared with $800 per day for an acute
care hospital bed or $600 or more for nursing home care.
What is lacking is commitment. State and local governments
must of course assume their part of the burden, but housing cannot
be developed without federal assistance.
Federal monies directed to the AIDS crisis to date have been
almost exclusively earmarked for education and prevention. Further
complicating the problem of funding streams is HIJD's position that
AIDS is not a disability. PWA's are thereby excluded from programs
to develop housing for handicap~ed persons under Section 202
initiatives. Those interviewed in the course of the survey agreed
unanimously that a federal funding stream to keep persons with AIDS
in existing housing and to encourage development of non-medical
residential care facilities is essential.
Other recommendations by survey respondents included measures
to ensure drug treatment and health care to all in need, and
particularly the improvement of access for homeless persons. Early
intervention to prevent homelessness among people with HIV was
xiii
PAGENO="0350"
346
stressed; such intervention would involve addressing the amount of
and application procedures for obtaining federal disability
benefits, as well as the cost of treatment and preventive
therapies.
Many advocates urged a realistic policy which would take into
account the long term nature of the epidemic, as well as
appropriate and adequate education for all persons. It was thought
to be particularly important for education efforts to dispel the
belief that only certain groups of persons are at risk of infection
with HIV, and to promote non-judgmental attitudes and acceptance
of homosexuality as a lifestyle.
Some coordination of the provision of housing and services for
people with HIV on a federal level was also recommended to ensure
that these are provided in a balanced way across the country.
Finally, it was felt to be of vital importance that there
finally be national recognition of this issue as a priority; that
there be leadership -- a national voice -- on the need for care for
all persons living with HIV.
xiv
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Introduction
AIDS is fast becoming a primary cause of homelessness across
the nation. Even more than other chronically ill persons, people
with AIDS and illnesses related to the Human Immunodeficiency Virus
(HIV) are at a disadvantage in the ever-worsening competition for
affordable housing. HIV-related illness (which is episodic and
increasingly debilitating by nature), often results in
homelessness. Fatigue, repeated illness and periodic
hospitalizations result in the loss of jobs and the loss of
housing. In addition, many persons with HIV lose their housing as
a result of discrimination. Once adequate housing is lost, it is
difficult or impossible to replace.
The downward spiral to homelessness is exacerbated by federal
requirements that persons with HIV-related illness "spend down"
their assets to the poverty level if they are to qualify for
financial assistance. Such benefits are crucial to obtaining basic
medical care as well as expensive life-prolonging medications. The
low level of Social Security disability benefits or local income
maintenance (typically less than $500 per month for persons unable
to work due to HIV-related illness), is also a significant factor
in the increase in homelessness among people living with HIV. Such
a monthly income is insufficient to pay rent in many communities,
much less to meet other needs.
Among persons who are already homeless, there has been almost
a complete lack of AIDS education throughout the country. Even
where education takes place, few homeless persons are able to
1
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348
secure the means to stop engaging in high-risk behavior. Drug
treatment is difficult or impossible to obtain, and few shelters
provide clean `works" or condoms. This has led to tragic,
predictable, and dramatic increases in HIV-seropositivity among
persons who are homeless or likely to become homeless.
Homelessness and AIDS have become powerful co-factors --
unless current government policies change, it is inevitable that
the weak will lose in the competition for scarce resources, whether
they are homeless persons in need of preventative health care or
people with AIDS who are in need of housing.
The Disproportionate Effect of AIDS on the Poor
AIDS strikes disproportionately at persons already on the edge
economically, and at persons who are targets of pre-existing
discrimination in housing, the delivery of medical care and other
services. In particular, AIDS has and will continue to hit hardest
persons of color, members of the gay community, IV drug users and
homeless youth.
AIDS and homelessness d±sproportionately affect people of
color in the United States. While African-Americans comprise 12%
of the United States population, they represent 27% of adult cases
of CDC AIDS, and 53% of pediatric cases. Latinos comprise 6% of the
U.S. population, yet they represent 15% of adult cases and 23% of
pediatric cases.1 These figures are even more startling in Eastern
1centers for Disease Control, Statistics Hotline, (404) 330-
3020, (404) 330-3021, (404) 330-3022, March 16, 1990.
2
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349
urban areas. Data from the New York City Department of Health AIDS
Surveillance Unit show that African-Americans and Latinos make up
60% of all adult cases of AIDS in New York City, 91% of all
pediatric cases, 85% of all IV drug users with AIDS, and 85% of all
adult women with AIDS. At the same time, people of color are
overrepresented among the homeless. In a recent survey, 11 of 26
communities surveyed reported that over 50% of homeless persons in
their area were persons of color.2
Poor women constitute another growing group of persons living
with AIDS who are largely disenfranchised by the economic, health
care and social service systems. Eight percent of nationwide AIDS
cases occur in women and the percentage of women among newly
reported cases has grown disproportionately over the last three
years.3 These women, predominantly persons of color, often must
cope not only with their own illness, but with the illness of a
spouse or child. They must deal with the day-to-day problems of
housing, jobs, medical and social service appointments, child care,
sickness and bill-paying. Some are justifiably afraid that their
children will be taken from them permanently during
hospitalizations, and out of fear many fail to seek care and
preventive treatments. In addition, as a result of public
perception of AIDS as a disease of gay white men and IV drug users
2National Coalition for the Homeless, American Nightmare: A
Decade of Homelessness in the United States, Washington DC,
December 1989, p. vii (Hereinafter American Nightmare).
3Centers for Disease Control, Harch 16, 1990. In fact, 19% of
new cases in New York City in the last month were women.
3
27-986 0 - 90 - 12
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350
only, there is a dearth of AIDS prevention and service programs
targeted to women, and particularly to homeless women.
Homeless youth, who constitute one of the fastest growing
segments of the homeless population, face significant and growing
risk of HIV-infection. The majority of these homeless young people
are "throwaway" youth who have been forced from their homes, often
by physical or sexual abuse. Many "throwaway" youth exist entirely
outside of any formal system, and never receive services of any
kind. These adolescents have little educational background and
few skills that would make them employable. Many must engage in
sex for survival. They are at high risk for violence, drug and
alcohol addiction, and diseases of all kinds, especially AIDS and
hepatitis B. Studies have indicated that a disproportionate number
of street youth are gay or lesbian. Their sexual orientation makes
it difficult for them to access such services as do exist, since
few institutions, public or private, are prepared to affirm their
identity.
A recent report suggests that, in New York City, 6.5% of
) homeless youth aged 16 to 20 are HIV-seropositive, and that the
seropositivity rate has reached 17% among youth who are 20 years
old.4 However, the problem is not confined to New York City.
There is considerable evidence that there is already a significant
4"On the Sad Trail of Street Youth, Drugs and AIDS," ~q~york
~ August 1, 1989.
4
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351
HIV-seropOSitiVitY rate among youth in cities across the country.5
Access to housing and services is most limited for active and
former substance abusers, the fastest growing group of HIV-
seropositiVe persons.6 Refusal of services to drug users who are
not in treatment has always been a problem. More recently, drug
users have been explicitly excluded from most federal and local
housing programs. This creates a tragic irony for drug addicted
persons who face long waiting periods for treatment in all parts
of the country.
Categorization of homeless persons with HIV by their
respective "risk groups" is easy, but doing so masks the reality
of who they are. Some were highly successful people by any social
standard until AIDS became a part of their lives. Others were
already struggling against the odds. Many chronic drug users with
HIV-related illness are military veterans whose psychological
wounds were never healed. For some, drug addiction preceded
homelessness. Others turned to drugs to medicate against the pain
of the streets. Each story is different, at least until they begin
to talk about their struggle against AIDS. Then the litany -- no
counseling, no housing, no social services, no medical care, no-
place to turn for help -- becomes depressingly the same.
5Denver, Colorado, p.41, jfl~iA; Los Angeles, California, p.48,
ia~ia; New York, New York, p.74, ~
6Centers for Disease Control, March 16, 1990.
PAGENO="0356"
352
The Struggle to Survive Without a Home
The physical and psychological effects of homelessness
combined with HIV are deadly. HIV operates to destroy essential
elements of the immune system, leaving HIV-seropositive persons
increasingly vulnerable to infectious disease and other hardships
entailed in life in crowded congregate shelters or on the streets.
The course of HIV illness is critically affected by a lack of
housing, which is a baseline for meeting health care and other
needs. Whether or not a homeless persons living with HIV is as yet
experiencing related symptoms, progression to serious illness and
death is hastened by repeated secondary infections, chronic stress,
malnutrition, and exposure to the elements.
The medical problems faced by homeless persons are well-known
and well-documented after a decade in which our nation has
witnessed ever-rising numbers of men, women and children struggling
to survive doubled up with others, in emergency shelters and on the
streets.7 Crowded living conditions and shared sanitary facilities
in public and private shelters make for environments rife with
infectious disease. Tuberculosis, thought to be a disease of the
past, has increased dramatically among the homeless poor across the
country.8 Hepatitis and respiratory infections such as bronchitis
and pneumonia are also common in shelters, as are enteric
Te.g, Homelessness, Health and Human Needs (Washington,DC:
National Academy Press, 1988); Brickner, Homelessness: Critical
Issues for Policy and Practice (Boston: The Boston Foundation,
1987).
8lbid
6
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353
infections which cause diarrhea.9 The prevalence of these health
problems is a serious matter for all homeless persons. For those
who are immune-deficient as a result of HIV, the problems are life-
threatening.
Yet, many homeless people with HIV-related illness are unable
to obtain even emergency medical treatment for conditions including
pneumonia, hepatitis, herpes, tuberculosis, oral and vaginal
thrush, meningitis, shingles, recurrent bacterial infection,
chronic fever, diarrhea and weight loss. Homeless persons with
HIV-related illness who do receive treatment often languish in
inappropriate and expensive hospital beds simply because they have
no other place to go. Others are "dumped" from hospitals onto the
streets or into emergency congregate shelters where infectious
illness is rampant, and violence, especially towards persons
perceived to be HIV-seropositive, is common.
Lack of information and understanding about the nature of HIV
transmission results in unwarranted fear and discrimination against
homeless people living with AIDS. Despite the fact that HIV cannot
be contracted through casual contact or cohabitation, but only
through engaging in risk behaviors such as unprotected sexual
contact or the shared use of needles, many shelters across the
country Wiil not accept persons known to them to be Ely-
seropositive. Such active discrimination, coupled with fear of
harassment and violence, has forced homeless persons with HIV-
9lbid.
7
PAGENO="0358"
354
related illness out of public and private shelters into the
streets, public transportation terminals, subway tunnels and
abandoned buildings. Others, particularly women with children,
double up with family members. Many hide their illness to avoid
being turned out into the streets or out of a fear of losing their
children.
In addition to a lack of safe housing, homeless persons who
are living with HIV are rarely able to obtain the basic medical
and social services to which they are entitled. Lacking stability
and often ill,, these persons are frequently unable to meet
scheduled appointments or otherwise cope with an inflexible
bureaucracy. Thus, they are often excluded from services and
benefits that are dependent on recipient responsiveness and must
rely on overcrowded public emergency facilities for their primary
medical care. This makes an ongoing treatment program impossible.
Finally, medical researchers cite housing instability as the
justification for exclusion of homeless persons from test protocols
of experimental therapies. Since AIDS has no known cure and few
effective treatments, homeless persons are thereby deprived of
possible means of medically improving their lives.
The Failure to Recognize
The Needs of Homeless Persons Living with HIV
As of January 31, 1990, 121,645 cases of AIDS had been
reported to the Federal Centers for Disease Control; more than 50%
8
PAGENO="0359"
355
of these persons -- 72,580 -- have died.1° The CDC estimates that
one to 1.5 million Americans are infected with HIV, and predicts
that~almost 500,000 will have died or progressed to later stages
of the disease by 1992.11 No one knows the actual number of
homeless or near-homeless persons with AIDS, although identified
populations were found to sxist in each of the 26 communities and
rural areas surveyed here.
One reason the axtent ofithe problem is not known is that both
aducators and~providers~serViflg~hOmel555 persons, as well as those
addressing~ the needs of. persons living with AIDS, have been~ slow
to acknowledge the housing iieedsof~ persons living with HIV.
Many persons who work with the homeless ~-have failed to
recognize AIDS and HIV infection as their problem. Among others,
there has been denial of the problem based on fear of further
stigmatization and discrimination against the homeless persons they
serve. Compounded in many cases by the provider's own lack of
understanding of HIV and AIDS, all this has resulted in the failure
to recognize the needs of homeless persons who develop HIV-related
illness.
Established AIDS organizations have also, for the most part,
failed to address the needs of homeless persons. Because of the
history of the epidemic, most AIDS advocates and providers are
10Centers for Disease Control, March 16, 1990.
`1Presidential Commission on the Human Immunodeficiency Virus
Epidemic, Report. (Washington DC: US Government Printing Office,
1988), p. XVII.
9
PAGENO="0360"
356
based in the middle class white gay male community. These
community-based organizations, largely privately funded, have
served their communities tirelessly and compassionately. However,
as more drug users, persons of color and women are affected,
existing AIDS organizations, on the whole, have not been able to
meet the needs generated by the cruel combination of poverty and
HIV.
Meanwhile, African-American and Latino community-based
organizations have little access to private resources. Nor do they
have the resources to compete with mainstream institutions for
large foundation grants or for all-too-scarce public monies. At
the same time, the clients these community-based organizations seek
to serve have the greatest need for assistance. The AIDS epidemic
has stretched traditional organizations beyond their capacity,
while the hurdles to developing AIDS-specific organizations are
almost insurmountable.
Added to this bleak picture is the fact that during the last
ten years, government funding for both the creation of affordable
housing, as well as for the care of persons living with HIV, has
been almost non-existent. Thus, homeless persons with special
needs such as HIV are pitted against other homeless persons for
scarce resources. Similarly, homeless providers are pitted against
those serving people with HIV. AIDS organizations and programs to
assist the homeless are not yet working together in most parts of
the country, and persons with HIV who are homeless, or threatened
with homelessness, are not served by either system.
10
PAGENO="0361"
357
Where services are available to homeless persons living with
HIV, access is often further frustrated by eligibility requirements
tied to a particular diagnosis. Most communities make services
available only to persons with "full-blown" AIDS, as defined by the
Centers for Disease Control (CDC). Designed only as a tool for
tracking the epidemic, this definition is meaningless as an
indication of the need for safe housing, access to health care or
supportive services.12 In fact, many persons, particularly persons
of color, women and drug users, die from HIV-related illness
without ever "achieving" CDC-defined AIDS.13 Moreover, many poor
persons, and especially the homeless, are unable to access health
care to obtain `~`necessary diagnosis or documentation of their
illness.
It is not surprising that most communities have made no
accurate assessment of the~need for housing for persons living with
12HIV infection, AIDS Related Complex (ARC) and AIDS are points
on a continuum of HIV-related illness. The CDC definition of AIDS
sets out certain types of infections -- known as "opportunistic"
infections -- to which the body is not susceptible unless the
immune system is severely compromised. However, once the immune
system is impaired by HIV, a persons is unusually vulnerable to
infections of all kinds, and typically experiences chronic
conditions including diarrhea, fatigue and weight loss. Numerous
infections and diseases which, are not yet part of the CDC AIDS
definition, such as tuberculosis, endocarditis, pelvic inflammatory
disease and certain kinds of non-cystic pneumonia, often result in
extreme illness and even death. These illnesses are more often
experienced by persons of color, women and drug users.
13Dr. Ernest Drucker, Ph.D., Director of the Division of
Community Health of the Department of Epidemiology and Social
Medicine,.~Albert Einstein College of Medicine, Montefiore Medical
Center, and Executive Director, Montefiore Drug Abuse Treatment
Program, September 16, 1988.
11
PAGENO="0362"
358
HIV. Faced with few if any HIV-related services and the threat of
discrimination and exclusion from existing emergency housing, many
homeless persons who know of their HIV-seropositivity are afraid
to self-identify. Many others remain unaware of their HIV status,
due to lack of access to health care'or the lack of physician
familiarity with HIV-related illness. Most HIV-related illnesses
experienced by women, for example, have not been incorporated into
CDC definitions. This often results in a failure on the part of
practicing general physicians and gynecologists alike to identify
the clinical signals that early intervention or prophylaxis is
appropriate.13
Given the historic penchant for undercounting homeless people
-- particularly persons who live in the streets, parks and other
public places (rather than in shelter systems), doubled-up
families, and young people who move in and out of various housing
arrangements -- one can assume that the current numbers of persons
with HIV in need of housing are even higher than present estimates.
Lack of accurate AIDS information and lack of access to effective
means of prevention of HIV infection ensures that the rate of
infection among homeless people will also continue to increase for
the foreseeable future. We do know that significant numbers of
persons who are already ill -- together with many thousands more
of those who will progress to serious illness in the years to come
13Late diagnoses could explain the fact that life expectancy
after an AIDS diagnosis is up to six times shorter for women than
for men. Patricia Kloser, M.D., Abstract, IV International
Conference on AIDS, Stockholm, June 1988.
12
PAGENO="0363"
S 359
-- will require safe, decent housing and related services: housing
and services which do not now exist.
Housing programs~ for Persons Living with H
Many homeless persons living with HIV are fully capable of
living independently. In such cases, rental assistance is the
quickest, most efficient and least expensive means of providing
appropriate housing. However, emergency rental assistance
available through existing programs such as FEMA (Federal Emergency
Management Agency) is typically limited to one month, and, as such,
does little more than foster false hope. For example, an SSI or
Medicaid application often takes three to four months to be
processed. Bureaucratic errors can easily extend that period to
six months or more. In cities with a large population of people
living with HIV, simply obtaining a diagnosis sufficient to qualify
for disability assistance often takes several months. In such
circumstances, one month's rental assistance only temporarily
forestalls homelessness. Moreover, in most communities, the level
of income maintenance and federal disability benefits is not
sufficient to enable persons to remain in their homes. An across
the-board increase in funding to meet the housing and service needs
of all persons with disabilities ~S essential. Pending that,
resources specifically targeted rental subsidies are needed.
As their AIDS-related illness progresses, more support may be
necessary for persons living with HIV. Visiting home nursing and
home help are sufficient to enable many to remain in their own
13
PAGENO="0364"
360
homes. "Scattered site" supportive housing programs for homeless
persons with HIV-related illness are also a cost-effective means
of providing for independence and necessary care. In these
programs, the provider agency, typically a non-profit, holds the
leases on apartments and houses located at scattered sites
throughout the community. These apartments, together with case
management and support services, are made available to homeless
persons with HIV.
For persons needing a higher level of support, various models
exist of appropriate supportive group residences. These programs
provide private rooms, meals and necessary services in non-
institutional settings which are permanent homes for their
residents. Because of their immune deficient condition, persons
with HIV-related illness generally have special needs. Persons
living with HIV should be provided with private bedrooms unless
they are voluntarily cohabitating with another individual. The
number of bathrooms per resident should be sufficient to permit
reasonable maintenance of sanitary conditions among people for whom
diarrhea is, in many instances, a chronic condition. Facilities
housing persons with HIV should have on-site kitchen facilities
capable of providing for special dietary needs, as well as access
to refrigeraticn for medication. Finally, the number of persons
housed in any one site should be low enough so as to facilitate
maximum community integration and a non-institutional setting.
Very few programs exist for housing persons who are dually
diagnosed -- who are HIV-ill and have mental health needs or suffer
14
PAGENO="0365"
361
from any type of addiction. Those persons require supportive
housing that addresses both issues. The need for transitional
housing providing drug treatment is particularly acute given the
increasing relation of drug use and AIDS,14 and federal and local
regulations excluding drug users from most existing public housing
programs.
Unfortunately, prejudice against people who are known to be
HIV seropositive, as well as efforts at cost containment as the
numbers of those people increase, put persons who are HIV-ill at
risk of being "warehoused" in crowded, substandard conditions. In
addition, some cities have turned to the development of skilled
nursing facilities and health related facilities for people with
HIV because Medicaid provides substantial reimbursement for
operating costs. Nursing home care is necessary on a transitional
basis for. some persons at some point in their illness, and
currently most nursing homes will not accept people with HEy.
However, since most persons with MIV-related illness do not need
such a high level of care, such facilities are unduly expensive to
society, and, as institutions, place significant limits on
residents' independence and privacy.
14The relationship of IV drug use to HIV infection, is well
known. (Hahn, Onorato, Jones, Dougherty, Prevalence of HIV
Infection Among Intravenous Drug Users in the United States,
Journal of the American Medical Association, Vol.261, No.18, May
12, 1989, p.2677). In addition, recent statistics indicate that
the use of crack is also associated with HIV transmission, due to
the sexual activity that surrounds drug use. (Ernest Drucker,
Ph.D., October 2, 1989).
15
PAGENO="0366"
362
Likewise, hospice care, available in some communities, is an
important element in the continuum of care. However, hospice care
is not housing, since it is designed for persons who have been
terminally diagnosed, typically with three to six months to live.
The Absence of a Federal Response or Plan
Recent developments in treatment make it possible to extend
the length and improve the quality of life for people with HIV-
related illness. Yet, for the thousands of persons without the
basic necessities of safe housing, food and access to medical care,
these developments are meaningless or cruelly ironic.
There are models for housing persons with HIV-related illness
that are appropriate and cost-effective. However, these programs
are so small as to be able to serve only a small fraction of those
in need. Almost all programs are privately funded, with no state
funding in most communities and very little local funding.
Meanwhile, the federal government has made no commitment to the
care of homeless people with AIDS.
Despite the fact that AIDS is one of the most serious and
devastating public health crises which has ever faced the United
States, there is no national strategy to deal with the emergency,
and there has been no action. The lP88 Report of the Presidential
Commission on the HIV Epidemic stated that the increasing number
of homeless persons with HIV infection was a serious problem; the
Commission made a series of recommendations for federal action,
16
PAGENO="0367"
363
including funding for the development of housing. These
recommendations have been ignored.
In fact, government inaction prompted the recently formed
National Commission on AIDS to write to president Bush, long before
their first report on the epidemic was due, to chastise the
President for failing to take action to address the crisis, and in
particular to provide for the care of persons living with HIV.
Federal monies devoted to the AIDS crisis to date have been
almost exclusively earmarked for research, education and
prevention,'5 and there is no federal funding stream for the
creation of housing, health care or other services for homeless
persons living with HIV. Moreover, the Department of Housing and
Urban Development has taken the position that programs for people
with AIDS and HIV-related illness are not eligible for funds under
existing programs to develop housing for handicapped persons.
Homeless persons living with AIDS and HIV-related illness have thus
been effectively denied access to any federal housing funds,
`5According to the General Accounting Office, 96% of federal
AIDS funding is targeted at education and research. General
Accounting Office, Delivering and Financing Health Services in Five
communiU~, United States Government Printing Office, Washington,
DC, September 1989, p. 25n.
17
PAGENO="0368"
3~64
including funds disbursed under the McKinney Homeless Assistance
Act.16
As the 1~ational Commission has observed, "the initial
appearance of HIV infection and AIDS in groups often shunned by
the larger society -- gay men, the poor, minorities, and
intravenous drug users -- encouraged a slow response," and "to
date, there is no national policy or plan, and no national voice"
on the HIV epidemic.17
The National Commission went on to state that, for the
homeless living with HIV, "housing and health care need to go hand-
in-hand. This is true not only for those who are homeless today,
but for those who will become homeless tomorrow because of the HIV
epidemic. ,,18
Site Selection and Methodology
The selection of communities and rural areas to be surveyed
for this report was made with the intention of broadening the
framework for understanding the national need for housing and
services for persons living with HIV. Most of the information
161n a proposed budget for 1991, President Bush has also
recommended a cut in funding for the federal Health Care for the
Homeless Program, which in most communities, provides the only
primary care available to homeless persons outside of crowded
hospital emergency rooms. Seventeen existing programs would be
defunded this year, and twenty-four proposed programs which have
been approved would not be funded.
17Letter from the National Commission on AIDS to President
Bush, December 5, 1989, pp. 4,6.
18National Commission on AIDS, p. 6.
18
PAGENO="0369"
365
contained in the report has been obtained by telephone. The report
attempts to quantify to the extent possible the current need for
housing, to describe the obstacles to the development of needed
housing and services, and to examine existing model programs.
19
PAGENO="0370"
366
Baltimore, Maryland
According to a recent survey conducted by the State Homeless
Services Program, over 21,000 persons-~wereiserved by the program
in one year,. while an. additional - 15,000 were -turned away.'9
Baltimore, like -many communities, is in -the midst of a severe
shortage of. low income housing for all people, not- just br those
with-"special needs." -The-med-i'an-monthlyrent for a-single room
.in.Baltimorebour years .ago was~-l39% of the- state public assistance
allocation for a single disabled person.2°
Meanwhile, Maryland-State health officials estimate that by
1991, Maryland cases of CDC-defined AIDS will number over 1400,
with most of those in the Baltimore area.21 An increasing number
of these persons will require housing that does not currently
exist. "A whole gamut of alternatives must be developed: more
intensified homes, housing options for evicted PWAs, homemaker
services, hospices, etc.," according to Andrew Barasda of Health
Education Resources Organization (HERO).22
19Baltimore City Department of Planning, "Nodel Demonstration
Housing and Evaluative Facility" as cited in Mary Slicher, Report
to the National Coalition for the Homeless Board, March 3-5, l989~
20Ibid. The state public assistance level for a single adult
in 1985 was approximately $125.
number is almost certainly low, as it represents cases
fitting the CDC definition, and is extrapolated from current
reporting of cases to the CDC. United States General Accounting
Office, AIDS Forecasting: Undercount of Cases and Lack of Key Data
Weaken Existing Estimates (Washington, DC: U.S. Government Printing
Office, 1989).
22Phone conversation with Andrew Barasda, Health Education
Resources Organization (HERO), July 25, 1989.
20
PAGENO="0371"
367
Earthtide, Inc., a private non-profit, has developed two
three-story, five-bedroom residences for single men with HIV who
have a history of drug use. They are currently seeking a facility
to house women with children. The program is "drug free" and
requires that residents participate in ongoing Narcotics Anonymous
programs. Earthtide is funded primarily by state and city grants,
as well as by rent provided through residents' federal disability
and Maryland Department of Social Services benefits.
A similar facility set up by AIDS Action Baltimore, Don Miller
House, provides housing for single men with AIDS. This program,
unlike Earthtide, has faced much community opposition. Its
location is kept a secret, and one service provider described
having to "slip [people with AIDS) into the neighborhoOd."~
The State Department of Health and Mental Hygiene has expanded
its "Project HOME" program to serve homeless persons with HIV-
related illness. Initially created to respond to the
deinstitutionalizatiOn of many of the state's mentally ill in the
late 1970s, Project HOME places persons with AIDS in private homes
and small community-based programs. Currently, Project HOME has
developed 37 supportive housing units, providing 70 beds; 56 of
these beds are currently filled.24 Case management is provided
through the local Department of Social Services. Project HONE
reimburses providers at a rate of up to $939 per resident per
23Barasda, July 25, 1989.
24Project HOME, AIDS Project Description, January 1990.
21
PAGENO="0372"
368
month.25 Officials have found, however, that clients are not
taking advantage of the program.26 One possible reason is
eligibility criteria that limit admission to persons with certain
CDC-defined conditions.27 Persons with AIDS who are capable of
independent living also find the foster care nature of the program
too restrictive.
25New York Times, "Maryland is Finding Homes for Homeless AIDS
Sufferers," December 6, 1987.
26Telephone interview with Larry Simmons, AIDS Program
Specialist, Project HOME, Department of Human Resources, State of
Maryland, July 19, 1989.
27Ibid
22
PAGENO="0373"
369
Birmingham, Alabama
The Health Care for the Homeless project in Birmingham has
seen a significant increase in the number homeless persons with
HIV-related illness in the past several years. In addition, they
report a significant increase in tuberculosis cases in Birmingham,
which they link to the spread of HIV infection.28
Official estimates put the number of full-blown AIDS cases in
Birmingham at over 180, but Randy Butts, Client Services
Coordinator of Birmingham AIDS Outreach, states that his
organization alone sees more than 10 new clients a month.29
Moreover, most of these persons are referred by the county and the
University of Alabama hospitals, and therefore reflect only that
part of the population already ill enough to have been
hospitalized ~°
"I hate using statistics, because the numbers [of homeless
persons with HIV-related illness] look so low," complains Butts,31
who asserts that many doctors in the Birmingham area don't report
AIDS cases to public health officials. There are no anonymous
testing sites in Alabama, and thus doctors are required to report
names, an act they feel would violate patient confidentiality.
28Telephone conversation with Amy Gates, Health Care for the
Homeless, August 1989.
29Telephone interview with Randy Butts, Client Services
Coordinator, Birmingham AIDS Outreach, December 1989.
30Ibid.
31Ibid.
23
PAGENO="0374"
370
Many private doctors don't know enough about AIDS, especially among
women, to diagnose it. In addition, a large segment of the at-risk
population, particularly those who cannot afford a private
physician, is not likely to get tested because of the absence of
anonymous testing.
Emergency housing is limited in Birmingham and privately
operated. Existing shelters will not accept persons who are known
to be HIV seropositive.32 Homeless persons with HIV must thus keep
their situation secret or risk exclusion from the only existing
shelter. One health professional said she personally knew of at
least three people with HIV-related illness sleeping in abandoned
boxcars and beneath an overpass.33
Potential housing for persons with AIDS in the Birmingham area
faces strong community opposition. Providers and politicians alike
have maintained a certain level of secrecy about a planned shelter
for persons with AIDS, since "in Birmingham, it's better not to go
public [with these plans) because it may backfire." ~
The Birmingham Health Care for the Homeless project worked
for over a year to obtain county approval for an eight-bed respite
care home for persons with HIV-related illness, and were repeatedly
stonewalled by zoning ordinances and an inability to win
neighborhood approval. They finally succeeded in opening this
33Gates, September 1989.
34Telephone conversation with Patricia Todd, Director of
Birmingham AIDS Outreach, July 26, 1989.
24
PAGENO="0375"
371
facility in late 1989, but the stay in this facility is limited to
15 days.35 Respite House is operated by Birmingham AIDS Outreach,
and funded through a Jefferson County grant which provides for one
nurse practitioner and one social worker. The Alabama AIDS Task
Force is seeking a separate grant from a private foundation to
provide case management services.36
One doctor stated that the reaction to the AIDS crisis in
Alabama has been characterized by paranoia and discriminatiOn
extensive state resources have been put into efforts to segregate
prisoners with HIV and to establish mandatory antibody testing.37
Meanwhile the needs for education, treatment, housing and services
remain ignored and underfunded.
35Gates, December 1989.
36Ibid
37Telephone conversation with Dr. Greg Barak, Birmingham,
August 1989.
25
PAGENO="0376"
372
d Chicago, Illinois
In Chicago, the AIDS epidemic and the related need for housing
and services are growing unchecked. One group that provides
advocacy and referrals for indigent people with AIDS receives 15
to 20'new referrals a month,38 and reports that it is impossible to
"provide the necessary services for homeless people with AIDS" with
existing resources in the city.39
The director of a supportive housing facility for persons with
AIDS calls housing the "most critical need" for persons living with
HIV-related illness in Chicago.4° A recent University of Illinois
study indicates that over 33% of homeless IV drug users in Chicago
are HIV-seropositive.41 The study found that some 25% of a sample
of the city's estimated 50,000 - 70,000 IV drug users described
themselves as homeless.42
Despite this acute need, there are fewer than 100 residential
beds for persons with AIDS. Often, the only recourse for such
38A1 Mafeia, as quoted by Lea Brown, Chicago Coalition for the
Homeless, Report to the NationaL~Coalition for the Homeless Board
of Directors, March 3-5, 1989.
39Telephone conversation with Charles Lyles,. Director of AIDS
Services, Travellers and Jmmigrants Aid, July 26, 1989.
40Telephone conversation with Mary Ellen Krems, Chicago House,
September 1989.
`1Hubert Horan, et al. "A Major Intervention research Project
Among Parenteral Drug Users Not In Treatment In Chicago, Illinois,"
* Abstract for the V International Conference on AIDS, Montreal, June
4-9, 1989; telephone conversation with Dr Richard Sherman,
* University of Illinois, Chicago.
42Telephone interview with Wendall Johnson, University of
Illinois, AIDS Outreach Interaction Project, September 21, 1989.
26
I~
PAGENO="0377"
373
indigent persons is the emergency shelter system. Those who
require regular or even intermittent medical attentiop must be
admitted to a hospital, since there are no nursing homes or shelter
care facilities that accept persons with AIDS.43
For groups that provide case management services to people
with HIV-related illness, appropriate housing is an acute and
worsening problem; securing housing is one of the most difficult
issues faced in case management.44 Rental assistance in the area
is limited. Federal Emergency Management Administration (FEMA)
funds are available, but they only cover a one-time, one-month rent
subsidy. Says one service provider, `It's more distressful than
no money at all."45 The subsidy only delays the inevitable
eviction for those persons who are at risk of losing their housing.
Other federal assistance available to persons with AIDS in Chicago
(such as SSI and SSDI) amounts to only approximately $368 a month,
hardly a sufficient income even for a healthy person with no
medication costs *46
A related need is "custodial care," also known as home care -
- assistance with chores and other daily activities. This need is
especially acute for persons experiencing AIDS-related dementia.
The major obstacle to the development of this type of care is a
43Brown, Report, March 1989.
44Telephone interview with Jim Lawler, Division of Social
Services, Howard Brown Memorial Clinic, July 26, 1989.
4mKrems, September 1989.
46Ibid
27
PAGENO="0378"
374
lack of funding: Medicaid will only subsidize skilled nursing care,
not custodial care. In general, statesone.-service~provider, "the
entitlements system is not responsive to reality."47
The supportive housing that is available is provided by
private groups with only limited government support. Two group
homes Bonaventure'House andChicago House -- provide residential
care for atotal of 53 persons. Another facility for seven persons
isunder~deveicpment.~ Most of the funding for these projects cones
from private donations, with a smaller contribution from the city.
City funding, however, only pays for occupied beds -- when a
resident's bed is held while he or she is in the hospital, the city
cuts of f payment bed during the hospitalization.
Meanwhile, persons who suffer from the illness of chronic drug
use -- a major factor in the ever worsening twin epidemics of AIDS
and homelessness in Chicago -- are unable to secure treatment.
Drug treatment in Chicago is hard to come by, with the waiting
period for treatment approximately six months.48 Such a lengthy
waiting list discourages many persons from even seeking treatment.
Even detoxification is difficult to find, and completely
inaccessible for women with children.
In spite of present unmet need and its certain growth,
awareness of the problem of housing for people living with HIV is
still very limited. "If people become more knowledgeable and
4TIbid.
48Sherman, September 1989.
28
PAGENO="0379"
375
aware, that will be the impetus to allocate funds and tap the
resources that will enable us to face this problem.... One of the
only things we have right now is hope -- hope that people will jump
on the bandwagon," said one advocate.49
49Lyles, July 26, 1989.
29
PAGENO="0380"
376
Cincinnati, Ohio
In Cincinnati, as in other cities, the problems of
homelessness and AIDS coalesce because of a health system which
fails to meet the needs of the poor, exacerbating their condition,
until they lose their jobs and housing. The Centers for Disease
Control estimate that 22,000 persons in the Cincinnati metropolitan
area are infected with HIV.50 Sue Butler, the director of Caracole
House, a provider of services and housing for persons with AIDS,
states that, although there is "not a great need [for housing] in
excess of what we are providing at this point," she sees an
increasing problem on the horizon. Says Butler, "The problem is
that people are not included in the medical loop of testing and
receiving care. Should the homeless be brought into that loop,
then the need for housing [for people with AIDS] would become
frighteningly manifest. ~H
Caracole House provides shelter, food and -transportation
assistance to persons with AIDS. In addition, workers there
attempt to find housing alternatives for their clients on a case-
by-case basis. Most of Caracole's clients to date have been
persons who-have lost or risk losing their housing because oftheir
illness. An official with the Cincinnati Health Department
confirms this, emphasizing the growing numbers of persons who have
had to relinquish their housing during the course of their
50Telephone -conversation with Sue Butler, Executive Director,
Caracole House, July 18, 1989.
51Butler, July 18, 1989.
30
PAGENO="0381"
377
illness.52 However, according to Butler, Caracole has been
receiving an increasing number of calls from persons who were
homeless before they became infected with HIV. While Caracole
House does not currently provide outreach to persons in shelters
or on the streets, Butler thinks they will soon need to offer
such.53
For those homeless persons with HIV-related illnesses living
in the shelters, conditions are bleak. None of the shelters allows
residents to remain inside during the day, a harsh restriction for
people with weakened immune systems, especially in bitter Ohio
winters.54 Butler also noted the reluctance of shelters to
adequately address the needs of homeless persons with AIDS:
.. .Administrators of the shelters don't want to deal with this
problem [AIDS), or they are scared and don't know how to deal with
it. One organization flat out said that they were advised by their
attorneys to drag their feet on this issue until the government
hands down a mandate saying you can't reject people who have tested
HIV-seropositiVe. ~
Drug treatment in cincinnati, as elsewhere, is inadequate to
assist all those needing treatment. Typically, an indigent or
52Telephone interview with Deborah Tripp, Cincinnati Health
Department, July 18, 1989.
53Ibid.
54Ibid.
55Ibid.
31
PAGENO="0382"
378
homeless substance abuser must wait 30 days for treatment.56 The
director of a substance abuse treatment facility also underscored
the need for safe housing for those he serves. "The present
services are wholly inadequate."57
Clearly, there is a growing trend of homelessness among people
infected with HIV in Cincinnati, and yet, as in other cities, there
is little understanding of the problem. Linda Seiter of AIDS
Volunteers of Cincinnati says, "[While] no research has been done
on homelessness and AIDS ... the demand we are seeing would
certainly warrant it."58
56Betty Lyles, Daytime Advocacy, Drop-In Center, April 1989.
57Telephone interview with Don Turner, Executive Director,
CCAT House, July 18, 1989.
58Telephone interview with Linda Seiter, AIDS Volunteers of
Cincinnati, July 25, 1989.
32
PAGENO="0383"
379
Dallas, Texas
The situation for homeless persons with HIV-related illness
in Dallas has been described as "bleak," both by those who work
with persons with AIDS and those who work with the homeless.59
According to Warren Buckingham III, AIDS Arms Network, a coalition
of private AIDS service organizations, is seeing an increasing
number of homeless persons seeking assistance. Buckingham says
that housing is "if not the most difficult, then the most chronic
problem faced with every client served. . . .At some point, every
client needs some type of shelter assistance."6°
An advocate for the homeless reports that the problem of HIV-
related illness among the 10,000 to 14,000 homeless persons in
Dallas County is. still in the early stages of recognition.61 It is
estimated that there will be at least 1500 to 1700 new cases of
CDC-defined AIDS diagnosed in Dallas in 1990, and that 20% of these
persons will be homeless or will become homeless as a result of
their illness. Claudia Byrnes, of the Dallas Association Serving
the Homeless (DASH), reports a significant increase in cases of
tuberculosis among the homeless, which she believes is indicative
of a growing HIV epidemic.62
59Telephone interview with Warren Buckingham III, Executive
Director, AIDS Arms Network, August 18, 1989; telephone interview
with Claudia Byrnes, Dallas Association Serving the Homeless
(DASH), August 18, 1989.
60Buckingham, August 18, 1989.
61Byrnes, August 18, 1989.
62Byrnes, August 18, 1989.
33
PAGENO="0384"
380
William Waybourne of the Dallas Gay Alliance calls his city
`the Calcutta of the AIDS epidemic."63 Jamie Shields of the AIDS
Resource Center and GUTS (Gay Urban Truth Squad) claims there are
a large number of gay youth -- at high risk for HIV infection --
living in abandoned buildings in the Dallas area.~
Shelters are the only option for most homeless people with
AIDS in Dallas, and while some shelters will knowingly accept
persons with HIV-related illness, others will not, so that in many
cases, a person's illness must be concealed in order to get a
bed.65
The response to the AIDS epidemic in Dallas has come almost
entirely from private non-profit AIDS service organizations. City
funding for direct services in Fl 1989 and Fl 1990 totaled only
$500,000 to serve a population the Centers for Disease Control
reports as numbering 2000. State funding of community-based
organizations has been limited by the state's sodomy laws, which
lawmakers interpret as prohibiting funding of "gay-backed"
organizations, since these groups "promote criminal activity. "~
The AIDS Policy Center in Washington calculated that, in fact,
Texas budgeted only 14 cents per resident for AIDS programs in
63As quoted in Bruce Lambert, "In Texas, AIDS Struggle Is Also
a Matter of Money," New York Times, January 5, 1990.
6~Telephone interview with Jamie Shields, AIDS Resource Center
and GUTS, December 8, 1989.
65Buckingham, August 18, 1989.
~Ibid.
34
PAGENO="0385"
381
1989, compared with $3.00 per resident in California and New
York.67 Since federal funding is often contingent upon state
expenditures, Texas receives very few federal dollars.
In spite of the limited funding, three housing programs for
persons with AIDS have been developed in Dallas. "A Place For Us"
is operated by AIDS Services of Dallas, and consists of two
adjoining apartment houses with a total capacity of 50. The
project offers a variety of supportive services, including case
management and home health care. The project is unique in that it
receives a large part of its funding from the federal government:
it is supported by one of the nine 2-year Health Resources and
Services Administration (HRSA) demonstration project grants.
Currently, the facilities are operating at approximately half their
capacity due to an arson fire which destroyed eight units and
rendered 15-20 others uninhabitable. AIDS Services of Dallas
cannot rehabilitate the damaged facilities due to a lack of
funding.~
The third facility, Bryan House, is a licensed foster group
home for children living with AIDS -- either the child or one of
his/her parents must be HIV-seropositiVe. Approximately five
children have received permanent shelter at the facility since
Hovember 1988, and another 50 receive day care services. Open
Arms, Inc., the parent company of Bryan House, plans an expansion
67Lambert, New York Times, January 5, 1990.
~Telephone conversation with Michael Anderson, AIDS Services
of Dallas, December 1989.
35
27-986 0 - 90 - 13
PAGENO="0386"
382
of 15 residential beds. Approximately half of the funding for
Bryan House comes from private donations, with HRSA and National
Institutes for Health (NIH) grants, as well as state foster care
funding and Medicaid, making up the difference.69
While the exact number of homeless persons with HIV-related
illness in Dallas is impossible to gauge accurately, it is clear
that 55 units of supportive housing are wholly insufficient to meet
the current need. Furthermore, Dallas is without a hospice or
nursing home facility for persons with HIV-related illness.70 For
homeless persons with AIDS, -the lack of an interim care facility
translates into a discharge from the hospital to a shelter or the
streets.71
Undercounting of persons with AIDS in Dallas is a real
problem, especially for the indigent. The are no free HIV-antibody
testing sites in Dallas, creating a disincentive for many to even
discover their HIV status until they are very ill and already in
a hospital emergency room.73 Moreover, most services in Dallas are
only available to persons with CDC-defined AIDS, thus disqualifying
all but the most severely ill.73
69New York AIDS Consortium, Supportive Housing Survey, New
York: October, 1989.
70Telephone interview with Charles Carnahan, Dallas AIDS
Interfaith Network, December 5, 1989.
71Byrnes, September 1989.
73Shields, December 9, 1989.
73Carnahan, December 5, 1989.
36
PAGENO="0387"
383
Finally, Dallas is seeing a sharp increase in AIDS cases among
intravenous drug users. Currently, there is no publicly funded
substance. abuse treatment in. the city, and Medicaid does not
reimburse clients for private drug treatment. Even if drug
treatmentwereMedicaid reimbursable, persons living with HIV must
wait two years after their ~initial AIDS diagnosis before they are
eligible for Medicaid in Texas.
37
PAGENO="0388"
384
Delmarva Peninsula
Public health officials estimate that there are approximately
5000 persons living with HIV in the State of Delaware; it is
further estimated, based on current caseloads, that 30% of these
persons will be homeless, need housing assistance of some kind, or
experience the need for housing as a major issue in the course of
their illness.74 Currently there are only 13 units of supportive
scattered site and group housing for persons with AIDS on the
entire Delmarva Peninsula.m The only rental assistance available
is through the regular social services system, and one-time, one
month subsidies from the Delaware Lesbian and Gay Health Advocates
(DLGHA) ~76 There are no hospices or nursing homes for persons with
AIDS in either Delaware or on the Upper Eastern Shore of Maryland.
The one existing group home for persons with AIDS in Delaware
-- Stephen Swain House in Wilmington -- faced a two and a half year
delay in opening, due almost entirely to community opposition. An
8-unit group home providing housing, meals and other services,
Swain House was opened in the summer of 1989 by the People With
AIDS Settlement Project, an initiative of DLGHA. While the house
74John Barnes, AIDS Program Office, Delaware Division of Public
Health, as reported by Carl Mazza, Coordinator, Meeting Ground,
March 13, 1989.
T5Telephone conversation with Tim Gibbs, Director of Housing,
Delaware Lesbian and Gay Health Advocates, November 29, 1989. The
Delmarva Peninsula is comprised of the Eastern Shore areas of
Delaware, Maryland and Virginia.
T6Ken Smith-Shuman, Community Services Administrator, The
Salvation Army, April. 1989; Mazza, April 1989.
38
PAGENO="0389"
385
is finally open, it is being used only as a transitional facility,
rather than the permanent housing facility planned due to the
sev'ere lack of supportive housing. Persons with HIV live there
until their SSI or Section 8 housing subsidies become available.77
Homeless people withAIDS on the Delmarva peninsula and their
advocates must struggle against community opposition and
discrimination. The housing project of DLGHA was begun in 1986 when
a man who was very ill with AIDS was brought into a makeshift
storefront shelter, set up by Meeting Ground in downtown
Wilmington. The man had been turned away from a number of city
shelters because he "appeared gay" and was suspected to have AIDS.
After two weeks, Meeting Ground was able to get the man admitted
to a hospital, but only "in secret." The man died in the hospital
two months later. According to Carl Nazza of Meeting Ground, this
case is .not an isolated incident.78
Shelters still regularly deny beds to persons perceived to be
HIV-positiVe. Even if they did admit persons with HIV-related
illnesses, they are clearly not prepared to meet the. special needs
of homeless persons with AIDS.7~ With Swain House always operating
at capacity since its opening, the only option for homeless persons
with AIDS are hospitals or the streets.
77Gibbs, November 29, 1989.
7~azza, March 13, 1989.
7~Gibbs, November 29, 1989.
39
PAGENO="0390"
386
Public funding for AIDS services is almost nonexistent. Swain
House is supported enti~ely by private funds.8° The Delaware State
Health Department offers no assistance for housing for people with
AIDS, stating that it is not their responsibility to do so.81 The
Departsent of Social Services also has been unwilling to address
the housing problems of persons with AIDS. Meanwhile, fully 60%
of DLGHA'S clients need financial assistance, "which ultimately
turns into a need for housing."82
There is practically no housing for persons with substance
abuse problems. Swain House requires residents to show that they
are in active pursuit of recovery, yet persons seeking drug
treatment can face waiting periods of up to 18 months. Alcoholics
Anonymous-type groups are inaccessible for many, since they are
not geared to the needs of drug users.83 For those actively
involved in drug use, the only option is the shelter system. Sadly
but not surprisingly in such an environment, intravenous drug users
represent the fastest growing group of persons with AIDS -- 24-30%
of all AIDS cases in Delaware can be attributed to sharing infected
needles.84
80Ibid
81Barnes, telephone conversation, December 1, 1989.
82Gibbs, November 29, 1989.
83Barnes December 1, 1989.
84As of November 20, 1989. Barnes, December 1, 1989.
40
PAGENO="0391"
387
Denver, Colorado
The operators of Horizon House, a supportive residence for
people with HIV-related illness in the Denver area, turn away three
to five persons in need of housing each week.85 Homelessness and
the need for home care and other supportive services is a growing
problem in Denver.~
Supportive housing for people with HIV is limited to two
private homes and one apartment building operated by a local
church.87 These residences combined house a total of 15 persons.~
In addition, one hospice will accept up to four persons with AIDS,
but only those in the most terminal stages of illness.89 The
Colorado AIDS Project offers a very limited rental assistance fund
for one-time emergencies only.9°
Denver is central to many southwestern states, attracting
persons from all over the region for care. One service provider
85lnterview with Harry Lester and David DeLaire, Horizon House,
March 12, 1990.
~Interview with SisterAnawim, Missionaries of Charity, March
12, 1990.
87Telephone interview with Earl Thomas, Colorado People with
AIDS Coalition, October 1989.
~Telephone interview with Debra Judisch, Colorado AIDS
Project, October 1989.
89Thomas, October 1989.
90judisch, October 1989.
41
PAGENO="0392"
388
estimates that she receives at least 10 requests a month for
temporary housing for people with HIV.91
For homeless persons unable to obtain housing, one privately
operated shelter accepts persons known to be HIV-seropositive.
Stays are limited to 30 days, although the shelter has 10 respite
care beds for men and three for women, and persons are allowed to
remain in respite care as long as necessary.92
Providers cite a severe need for a health-related or interim
care facility. Most nursing homes and adult care homes in Denver
will not accept persons with HIV-related illnesses. At any given
time, 20-25 persons are in need of this kind of interim facility.
The AIDS Project attempts to match these persons with "buddies" who
can provide ongoing care until such time as the client is "sick
enough" to be admitted to a hospital.93Homeless and runaway youth
are the most visible tip of this iceberg, and perhaps the hardest
to reach with education, treatment, services and housing.
Outreach workers state that high risk behavior like "survival
sex" and drug use among homeless youth would lead them to believe
that HIV seroprevalence is relatively high.94 Testing, counseling,
or ongoing contact of any kind is difficult to maintain since these
91Ibid.
92lnterview with Mary Ann Gleason, Director, Health Care for
the Homeless, March 12, 1990.
93Ibid.
94Telephone interview with Anne Shields, Youth Educator,
Colorado AIDS Project, October 1989.
42
PAGENO="0393"
389
youth tend to be highly mobile, "working" a circuit that takes them
to Seattle, San Francisco, Los Angeles, Phoenix and Kansas City,
as well as Denver. "They don't stick around long enough to get
tested or to find out the results.~,m The fear of discrimination,
as well as a general survival policy of extreme privacy and non-
disclosure, typically causes these youth to dissemble about their
drug use and HIV status.96
One recent study showed an HIV-seroprevalence rate of 5.3% in
Denver.97 While this figure is relatively low compared to other
cities, there are few services for this population. Persons with
dual diagnoses of AIDS and drug addiction or AIDS and mental
illness are without options in Denver.98
Denver has been chosen by the CDC as one of five cities for
a study to estimate the numbers of homeless persons living with
HIV. In February 1990, a nurse joined the Denver Health Care for
the Homeless clinic to conduct testing and counseling as part of
the CDC study. However, the clinic has agreed to participate only
on condition that services be provided for those who test HIV-
seropositive, and is waiting to learn :what services will be made
95Ibid.
96Ibid.
97David Cohn, et al, "Comparison of Prevalence of HIV Infection
in IV Drug Users From Four Different Testing and Treatment
Programs," Denver, Colorado, Abstract from the V International
Conference on AIDS, June 4-9, 1989, Montreal.
98Judisch, October 1989.
43
PAGENO="0394"
390
available.99
99Gleason, March 12, 1990.
44
PAGENO="0395"
391
Detroit, 4ich~g~io
Detroit provides a stunning example of a city in which
widespread discrimination against people with HIV infection has
combined with government inaction to exacerbate the effects of the
"twin epidemic" of homelessness and AIDS. Housing for people with
HIV-related illness in Detroit is considered a "major problem" by
several community AIDS service providers100. Homelessness among
people with HIV-related illness is showing signs of growing with
the same rapidity as the epidemic itself. One AIDS service provider
estimated that one-fifth of her current caseload was in need of
immediate housing, and many more were in danger of losing their
current housing.101 Indigent persons with HIV-related illness are
regularly "dumped" from hospitals and other care facilities to
shelters or the streets. Further, a service provider who works
primarily with intravenous drug users said that while primary
health care was the most important concern for the community he
serves, this care was very difficult for IV drug users to obtain.
Residential treatment and comprehensive home care are impossible
to provide to persons who have no home.102
Within privately operated congregate shelters -- the only
emergency housing available in Detroit -- a lack of coordinated
`00Telephone interview with Annette Taylor, Community Health
Awareness Group (CHAG), September 1989; telephone interview with
Rick Talley, Neighborhood Services, Detroit, Michigan Department
of Social Services, September 1989.
`°1Taylor, September 1989.
102Talley, September 1989.
45
PAGENO="0396"
392
AIDS education has resulted in extreme hostility towards homeless
persons with HIV-related illness. One service provider recounted
a recent incident at one of the shelters where a homeless person
revealed himself to be HIV-seropositive during a group meeting of
shelter residents. The other people at the meeting called for the
his immediate removal. Shelter workers asked a local grassroots
AIDS service provider to send someone over immediately to calm the
situation and provide an emergency teach-in on HIV transmission.103
The discrimination in congregate facilities is matched by
discrimination from individual landlords. One AIDS service
provider who assists clients in finding permanent housing said she
often claims to be from the "Detroit Department of Housing" -- a
nonexistent agency -- to explain why she is advocating for the
prospective tenants. According to this advocate, any mention of
the client's HIV-seropositivity would incite the landlord's
"AlDSphobia" and result in a denial of housing.'°4
The lack of options for homeless persons living with HIV is
compounded by the failure of government to respond to housing
needs. No city or state agency assists in the provision of housing
for homeless persons in Detroit, either financially or
administratively. Moreover, inadequate and inappropriate housing
is not perceived as such. At least one public health official
claims that they are "not seeing a great need for housing on a
103Taylor, September 1989.
104Ibid.
46
PAGENO="0397"
393
short or long term basis. The situation is stable -- people are
staying with friends, lovers and family."°5 This official fails
to perceive `doubling up" as an often inadequate, temporary
response to the housing crisis.
To date there have been just under 700 cases of AIDS reported
in Detroit.106 Approximately 23% of persons with AIDS in Michigan
are drug users.107 Meeting the anticipated housing needs of this
community will require both government and private commitment.
Education appears as a key element necessary for the development
of realistic programs for housing and services for people with
living HIV-related illness. Meanwhile, under-funded non-profit
organizations will continue to bear the brunt of a crisis they
cannot possibly address.
Private organizations are coping as best they can. A grant
submitted by Health Care for the Homeless for a six-unit hospice
for persons with AIDS has recently been approved. Community Health
Awareness Group is expanding its outreach programs, and putting
pressure on local officials to provide increased AIDS education.
In addition, this organization maintains a limited emergency fund
to provide their clients with financial assistance for rents,
security deposits and utilities.
105Telephone interview with Ken Pape, Department of Social
Services, September 1989.
106Telephone interview with Elizabeth Givens, Community Health
Awareness Group, March 20, 1989.
107Ibid
47
PAGENO="0398"
394
Los Angeles, California
Los Angeles is second only to New York City both in estimated
numbers of homeless persons (50,000)108 and reported cases of AIDS
(8,368).109 Faced with a severe shortage of affordable, low-income
housing, an increasing number of persons with AIDS and HIV-related
illnesses are finding themselves sleeping in shelters, parks and
cars. In addition, Los Angeles has a large population of homeless
and runaway youth who have been especially hard hit by the HIV
epidemic.
The need for long term, low income housing for persons with
HIV-related illnesses is just beginning to be recognized and
addressed. AIDS Project Los Angeles' (APL?~) proposal for an 8-unit
apartment building of subsidized low-income housing for persons
with AIDS was recently approved, and should be open by the end of
this year.
Meanwhile, APL1~ is continuing to work with shelter providers
to increase awareness of services for persons with AIDS within the
shelter system. Most shelters do not provide any special services
for persons with AIDS beyond regular case management. A survey
conducted in July 1989 found that 70% of the programs surveyed did
not provide any AIDS-related services.~~0 As in other cities,
people with AIDS within the shelter system in Los Angeles must
108American Nightmare, p. 69
109Centers for Disease Control, March 5, 1990.
~0Los Angeles Homeless Health Care Project, Review Draft, July
7, 1989.
48
PAGENO="0399"
395
contend with a lack of understanding of their illness as well as
discrimination. According to a study by the Los Angeles Homeless
Health Care Project, "Shelter staff do not seem to have thought
aboutthe idea there are probably airaady -PWA5 within their shelter
population who are not disclosing their diagnosis because of
fear."111 APLA and the Homeless -Health Care Project have been
working to educate shelter providers and to overcome their
un-informed fears about HIV infection and~caring for persons with
AIDS.
-~There ~a-re:~currentlyflO- programe to::provide ongoing rental
ass-imtaTice --to~persons'with HIV-relatedillnesS. One community-
based organization, Aid for AIDS, does provide one-time emergency
assistance with- security deposits and first month's rent.~2
However, confusing processes, bureaucratic delays and inability to
obtain necessary information make it difficult to secure public
assistance or federal disability benefits. As a result, persons
often lose their housing while awaiting~ entitlements.~3
Supportive housing for persons with AIDS is extremely limited.
The state has begun-a pilot project of "Residential AIDS Shelters,"
usually three-bedroom houses for up to six persons. Four of these
are currently operating in Los Angeles County; one houses 14
persons who are dually diagnosed (i.e., HIV-related illness and
~`1Homeless Health Care Project, July 7, 1989. -
~2Telephone conversation with Pam Anderson, AIDS Project Los
Angeles, March 5, 1990.
~3Ibid.
49
PAGENO="0400"
396
mental illness or drug addiction). This last facility has a
waiting list of 23 persons.114 There is one 25-bed hospice for
persons with AIDS, but the facility is designed for those who are
"terminally ill," and are expected to live less than six months.~5
Nursing homes do not generally accept persons with AIDS or HIV-
related illnesses.
One large portion of Los Angeles' homeless population are
homeless and runaway youth, who are at especially high risk for
HIV infectiori.~'6 Many, if not most, are forced to practice
"survival sex" in order to meet their most basic needs of food,
clothing and shelter.~7 Drug use is also widespread in this
population. One service provider says, "If you're a kid on the
streets, it's better to be numb."~8 Drug addiction, of course,
only increases the risk of HIV infection for these young people.
Gary Yates, a service provider with years of experience
serving homeless and runaway youth, wants to see housing addressed
on a national level as a preventative measure against HIV infection
among homeless youth. "If we had to choose between education and
shelter for people on the street," says Yates, "I would choose
~4Ibid.
~5Ibid.
~6Telephone conversation with Gary Yates, Division of
Adolescent Medicine, Coordinating Council for Homeless Youth
Services, August 1989.
~7Ibid.
~8Ibid.
50
PAGENO="0401"
397
shelter -- not because education isn't important, but if you're
living on the streets, education doesn't have the same impact."119
Education and outreach without housing is "missing the boat, it's
crazy. If you have a place to stay tonight, you may not need to
turn that trick."120
Unfortunately, there are few options available for homeless
youth in Los Angeles. While there are two youth shelters which
provide comprehensive AIDS-related services (medical, counseling,
social services, support groups, education), the programs are
largely designed for teens under the age of 18.121 Older teens are
too often relegated to the streets and to concomitant high risk
behavior.
~9Ibid.
120Ibid
121Telephone interview with Arlene Schneir, Risk Reduction
Coordinator, Children's Hospital of Los Angeles, August 1989.
51
PAGENO="0402"
398
Maine
Although public.health officials in~Maine state that as of
July 1, 1989, only 137 cases of AIDS had been diagnosed in the
state, one AIDS serviceprovider estimates that the numbers are at
least twice that. "A lot of people come home to Maine from
somewhere else [after their diagnosis) to be with family and
friends."122 Large cities like Portland are experiencing increased
caseloads of homeless people with HIV-related illness. One reason
for this is the so-called "greyhound" therapy, a practice in which
social service departments or municipal governments suggest that
their clients seek care "in a more appropriate geographical area
[a large city) and give them the bus fare to go there."123
There is an acute need for affordable housing for all persons
in this largely rural state, including those with AIDS. Disability
entitlements are too low to live on. "There is a tremendous need
for affordable housing. Although this is a very rural area, you
still cannot make it on SSI.,,124 The current level of SSI for
single adults in Maine is approximately $375, while rents for one-
bedroom apartments in most cities average $450_$500.125
122Telephone conversation with John Silvernail, Case Manager,
Eastern Maine AIDS Center, July 25, 1989.
~The AIDS Project of the United Way of Greater Portland, ~
Task Force Report, (Portland, Maine, February 1989), 25.
124Ibid
125Telephone interview with Nancy Proctor, Tedford Shelter,
Brunswick, Maine, March 20, 1990.
52
PAGENO="0403"
399
Currently, there is only one residence for persons with AIDS
and HIV-related illness in Maine. The Lodging House in Portland,
with a capacity of five, is a group home administered by the
Portland AIDS Project.126 It is designed for persons who can still
live fairly independently, but who require ready access to case
management and other supportive services. However, when their
condition worsens, these persons must leave Lodging House. Perry
Southerland, the Director of Client Services for the AIDS Project,
reports that "...many residents who are healthy at first quickly
worsen and are unable to stay in the program. There is no real
interim facility for people with AIDS."127
According to the task force report issued by the AIDS Project
of the United Way of Greater Portland, "currently, there are not
appropriate resources to care for people with AIDS needing chronic
care, especially when dementia is involved."128 The report notes
the resistance of nursing homes to accepting persons with AIDS, the
inability of some existing nursing facilities to handle persons
with AIDS-related dementia, and the inability of existing menta.l
health facilities to meet the medical needs of persons with AIDS
as obstacles to the availability of interim care beds.129 Since the
126Telephone interview with Steve Pinkham, Director, Lodging
House, March 20, 1990.
127Telephone interview with Perry Southerland, Director of
Client Services, Portland AIDS Project, July 20, 1989.
128~~ Task Force Report, p. 40.
129Ibid
53
PAGENO="0404"
400
establishment of new facilities specifically for persons with HIV-
related illness does not appear likely, the AIDS Project is
recommending the expansion of existing facilities, as well as the
development of beds in nursing homes dedicated to persons with
AIDS.130
Drug treatment in Maine is negligible, with no methadone or
detoxification programs available in the entire state. While
current or former intravenous drug users presently represent only
a small percentage (8%) of the total AIDS caseload in Maine,131 that
number is growing, and, as in other communities, will continue to
do so as long as treatment remains unavailable.
InMaine, as in many other states, there is little or no
funding for independent housing or supportive group housing for
people living with HIV-related illness. Government has funded some
education, research and testing programs, but has provided
virtually no monies for services. One exasperated service provider
states, "the government needs to take responsibility for this
health crisis. Funding must go to help those living with AIDS, not
just for education."132
1301bid., p.41.
131Maine Department of Human Services, Office on AIDS, July 30,
1989.
132Silvernail, July 25, 1989.
54
PAGENO="0405"
401
Manchester, New Hampshire
The common perception in Manchester is that AIDS is "a big
city problem -- there's no problem here." 133 However, every
service provider interviewed in Manchester mentioned the shortage
of doctors in New Hampshire with any substantial knowledge about
AIDS.134 They all emphasized that most persons are forced to travel
to another state to obtain HIV-related treatment. One hundred
thirty one cases of CDC-defined AIDS have been reported
statewide.135 However, many New Hampshire residents are diagnosed
in nearby states, not affecting the caseload reports in New
Hampshire. In Manchester, as in many other smaller cities, the
extent of the epidemic is likely underestimated. In fact, in a
Manchester shelter for homeless persons with a total capacity of
48 beds, 20 persons identified themselves as having HIV-related
illness in just thelast year.136
Service providers also reported widespread ignorance and fear
of HIV and those persons living with the virus.137 Efforts to
provide medically appropriate housing for persons with HIV-related
133AS reported by Howie Coletta, Prodigal House, telephone
interview, December 5, 1989.
134Coletta, December 5, 1989; telephone interview with Rose
Harris, shelter manager, July 21, 1989; telephone interview with
Ron Gendren, Helping Hands, December 1, 1989.
135Telephone interview with Lois Carroll, Manchester Health
Department, December 5, 1989.
136Harris, July 21, 1989.
137Coletta, December 5, 1989.
55
PAGENO="0406"
402
illness in Manchester have met with landlord and community
resistance and widespread discrimination.138 One shelter manager
described the difficulties of one of her clients who, once he had
received a public housing assignment, was forced to wait for months
before he was allowed to move in -- the apartment was held up by
fictitious delays created apparently in the hopes the client would
die before the housing became available.139
Funding for services for persons with AIDS is in short supply.
According to a public health official, the state does not provide
the matching funds necessary to access federal monies.140 The
director of a halfway house states, "[We have] a 19th century
budget with 20th century problems."141 Neither the State of New
Hampshire nor the City of Manchester has provided AIDS funding to
their respective health departments for anything but prevention and
"surveillance." Any existing services for people living with HIV
are paid for by private donations.
Currently, there are no designated housing programs for
persons with HIV. Two halfway houses for recovering substance
abusers, Terrill House and Prodigal House, offer short-term
transitional housing for a total of 38 men. Terrill House,
however, has a waiting list of eight weeks. Furthermore, neither
138Ibid
139Harris, July 21, 1989.
140Carroll, December 5, 1989.
141Coletta, December 5, 1989.
56
PAGENO="0407"
403
program offers special services for persons with HIV, only
referrals to the Manchester health department and to a private
counseling program.142
Helping Hands, a supportive housing program for homeless
persons provides transitional private housing for 11 people in
seven apartments. While the program is not exclusively for persons
with HIV-related illnesses, an unspecified number of such persons
had been helped by the organization. Ron Gendren, the director of
Helping Hands, is exploring the establishment of temporary housing
or a series of apartments for persons with AIDS, but is worried
about community opposition. He emphasized that such a program would
have to keep its location a secret to avoid discrimination.143
In general, there is a dire lack of supportive housing
programs or treatment for people with AIDS in New Hampshire. This,
combined with a climate of fear and prejudice, may explain why many
persons with HIV-related illness choose to leave the state.
142Telephone conversation with client service representative,
Terrill House, December 1, 1989; Coletta, December 5, 1989.
143Gendren, December 1, 1989.
57
PAGENO="0408"
404
Miami, Florida
"[There are] over 50 people with full blown AIDS lying in the
street by County Hospital.'144 This one image clearly expresses why
one AIDS service provider describes homelessness among persons with
AIDS in Miami as a "major disaster."145 Estimates of HIV-
seropositivity among the 15,000 homeless in Miami range from 5 to
ll%;146 Florida.. ranks highest in the nation in the rate of new
infections.147 Among intravenous drug users not currently on the
street, the seropositivity rate is as high as 33%~148
Entitlements available to people with HIV in Miami are
difficult to obtain ,and insufficient. For many, the application
process for SSI takes so long that when the entitlements do arrive,
they' are too late, and amount to nothingmore than a "reward for
dying."149 Income maintenance for persons with AIDS in Miami is
`44Telephone interview with Bob Kunst, Director, Cure AIDS Now,
July 25, 1989.
1451bid.
146Telephone conversation with~ Beth Sacksteiri, President, Miami
Coalition of Care to the Homeless, (5%), July 19, 1989; Dr. David
Fink, Prof. of Social Work, Ban University, (6-7%), July 20, 1989;
PJ Greer, Jr., M.D. et al., "HIV Infections Among Homeless in
Miami," V International Conference on AIDS, Montreal, June 5, 1989
(11.1%).
147Centers for Disease Control, July 1989.
145Clyde B. Mccoy, et al., `~A Comparative Analysis of HIV
Infection Among IV Drug Users in~ Treatment and -on the Street,"
Abstract from the V International Conference on AIDS, June 4-9,
1989, Montreal.
149Dominic Magarelli, Cure AIDS Now, October 1989.
58
PAGENO="0409"
405
minimal (a maximum of $426 a month), and wholly inadequate for
independent living.150
Very little supportive housing is available. The Salvation
Army operates a facility for six men with AIDS, providing 7-14 day
emergency shelter.151 The Roman Catholic Archdiocese operates a
30-bed congregate facility that has been widely criticized. One
service provider called it `prison-like"52 the facility houses
three persons to a room, forces residents to sign in and out, and
refuses to allow them to hold and take control of their own
medication.153 The South Florida AIDS Network (SFAN), coordinator
of AIDS services in that area, commonly must refer homeless persons
with HIV-related illnesses to hotels.
Moreover, Lori Kessler, Education and Community Resource
Director for SFAN, is concerned that efforts be expanded to help
those persons who are not yet. sick: "We must work to keep them at
the HIV-positive, asymptomatic status. . . . [this is necessary to]
keep people productive and active, and therefore less dependent on
the system."54
150Ibid.
`51Telephone interview with Cindy Flackmeier, Family Services
Supervisor, Dade County Salvation Army, July 25, 1989.
152Marlene Arribas, Cure AIDS Now, October 1989.
`53Magarelli, October 1989.
`54TelephOfle interview with Lori Kessler, Director of Education
and Community Resources, South Florida AIDS Network, July 26, 1989.
59
PAGENO="0410"
406
The inadequacy of education and outreach, especially in the
Hispanic and Haitian communities, was -emphasized by several
persons.155 The fear of deportation as well as language barriers
severely complicate the problems of outreach in-those communities.
In addition, the fear of deportation prevents-many undocumented
-aliens -and refugees. from -coming forward for care or even
-identification out of a justifiable fear that they will be sent
back to their country of origin.156 This climate of fear is
exacerbated by Immigration and Naturalization Services regulations
which call for the deportation of even those foreign nationals with
proper documentation who are HIV-seropositive.
Many of the service providers surveyed said that, although the
Miami community is often caring and concerned, the "Not In My Back
Yard" syndrome has emerged as an obstacle to developing housing for
persons with AIDS. When the Salvation Army opened their six-person
shelter, a local television reporter went door-to-door looking for
"community opposition."157 As one provider put it, "the media loves
pouncing on that stuff."158 Yet, lack of funding to meet the
growing need for housing and services remains the primary obstacle
155Mireille Tribie, Assistant~ Executive Director, and Manuel
Laureano-Vega, MD, Executive Director, League Against AIDS,
Congressional hearings on "AIDS and Young Children in South
Florida," August 7, 1989.
156Ibid.
157Flackmeier, July 25, 1989.
158Kessler, July 26, 1989. I
60
PAGENO="0411"
407
in Miami. According to one AIDS service provider, "We need federal
funding so bad it hurts."159
159Nagarelli, October 1989.
61
PAGENO="0412"
408
Service providers in the Nashville area are seeing an
increasing number of clients who are HIV-seropositive. The
outreach team of Services for the Homeless helps one to three
persons living with HIV each week.160 Similarly, an AIDS service
provider reports that of her~ 140 clients, six are currently
completely homeless, and many ot~hers are doubling up with friends,
living in motels, or staying in~ shelters.161 A Nashville outreach
worker observed that "Shelters are often the only recourse [for
homeless persons with HIVJ betw~en hospitals and the streets."162
Neither the State of Tennessee nor the city of Nashville
provide any programs or funding~specifically for people with AIDS
or HIV-related illness.163 Federal monies available through Centers
for Disease Control grants are limited to education and research.'~
Persons with AIDS must compete with other indigent persons for
public housing, and face a waiting period on average of four
months.165 At least one man lan~uished in a private hospital bed
for three months simply because he had no housing. He was finally
160Telephone conversation with Christine Letson, Services for
the Homeless - Mobile Outreach Team, December 5, 1989.
`~Telephone conversation with Julie Jones, Nashville Cares,
January 5, 1990.
162Letson, December 5, 1989.
163Jones, January 5, 1990.
`~Ibid.
165Ibid.
62
PAGENO="0413"
409
transferred to a county hospital, where he died shortly
thereafter.
People with HIV-related illness have special problems when it
comes to dealing with city and state agencies which offer general
public assistance to homeless persons in Nashville. For example,
persons with HIV-related illness are often unable to keep
appointments because of their illness. Public agencies then
penalize these persons for "non-compliance."167
Nashville Cares, a private non-profit, in conjunction with
Focus Ministries, provides case management and limited, one-time
emergency rental assistance to people living with HIV.~ In
addition, they help persons find temporary housing in motel rooms
or shelters. Nashville Cares, as well as Minority AIDS Outreach,
advise their clients to keep their HIV-status a secret, since both
shelter staff and motel owners frequently turn away persons who are
HIV-ill 169
As elsewhere, there is a critical need for supportive housing
in the Nashville area. Existing nursing homes, claiming that they
are ill-equipped to meet the needs of persons with Ely-related
illness, do not accept persons they know to be HIV-SeropOSitive.17°
~Ibid.
167Letson, December 5, 1989.
~Jones, January 5, 1990.
169Jones, January 5, 1990; Beverly Brown, Minority AIDS
Outreach, December 20, 1989.
170Letson, December 5, 1989.
63
PAGENO="0414"
410
Meanwhile, an increasing number of persons experiencing dementia
and other complications from AIDS need supportive facilities with
ongoing skilled nursing care. These persons often end up in
-expensive hospital beds when, in fact, they do not require the
services of an acute care facility.
While hospices in the Nashville area do accept persons with
AIDS, these facilities are for the terminally ill, and therefore
do not~accept persons until they are very ill.'71 These programs
are not housingplacements, but simply a place to die.
Drug treatment in the Nashville area is available through
private programs, arid is not accessible to most indigent persons.
Medicaid and insurance reimbursements for treatments are limited,
resulting in treatment based less on need than on available
resources.172
All the providers surveyed in the Nashville area stressed the
acute need for supportive services and housing, agreeing that local
monies for these services did not appear to be forthcoming.'tm
`71Ibid.
172Brown, December 5, 1989.
173Brown December 5, 1989; Jones, January 5, 1990; Letson,
December 5, 1989.
64
PAGENO="0415"
411
Newark, New Jersey
AIDS and drug use are devastating this city of 312,000. Over
3,300 persons, a little over 1% of the entire population, have been
diagnosed with full-blown AIDS; it is estimated that approximately
20 times that number, or 20% of the City's population, are infected
with HIV.174 Among intravenous drug users in Newark, the
seropositivity rate is 60%. At University Hospital, which serves
mostly indigent persons, just under 5% of all babies in a recent
study were born to a woman with HIV infection.lTh In a city where
75% of persons with AIDS contracted it through sharing infected
needles, the wait for drug treatment is three to nine months.176
One-third of Newark's population lives at or below the poverty
line. Overall, there are approximately 16,000 homeless and ill-
housed people in Newark and only 600 shelter beds.~ On any given
day, fully half the caseload of patients with AIDS at University
Hospital are homeless.178 One man, recently discharged from prison,
died on the street not three blocks from University Hospital.179 An
inordinate number of those who have become HIV-ill were marginally
174Centers for Disease Control, February 19, 1990; Jeff Lampl,
Executive Director, Hyacinth Foundation, August 1989.
175Sandra Boodman, "Up Against It: In Newark, a Public
Hospital Fights the Twin Plagues of AIDS and Drugs," Washington
Post Health Supplement, September 5, 1989.
176Ibid.
mAmerican Nightmare, p.96.
178Boodman, September 5, 1989.
~Lampl, September 1989.
65
PAGENO="0416"
412
housed, or even homeless to begin with. For these persons,
according to one shelter provider, the social services system
provides next to nothing. They [PWA5] fall through the cracks,
no, the widening gap [in services]," he says.180
The.response from the City, of Newark and the state has been
minimal. While there are 11 beds reserved for people with AIDS
or ARC at a residential drug treatment facility in Newark, there
is currently: no actual housing earmarked for persons with AIDS in
Newark. A group residence, licensed as a "boarding home" with 25
beds is expected to open in March 1990. The state provides
temporary rental .assistance through its "Homeless Prevention
.Program," for any household with at least one person with AIDS.
The.assistance is available only during the waiting period for
Section 8 vouchers.18'
In Newark, more than in any other American city, entire
families of poor persons are becoming ill. . Forty percent of
persons with AIDS in Newark are women, and many of these women have
children who are themselves infected with HIV.182 The community-
based organizations which sprang up in the gay communities of many
cities to provide the first response to the illness never appeared
`80Telephone intarview with George Gossett, American Rescue
Workers, January 3, 1990.
~ Telephone conversation with Derek. .Winans, chair, Newark
Community Project for People with AIDS, January 2, 1990.
182Boodman, September 5, 1989.
66
PAGENO="0417"
413
here -- less than 25% of AIDS cases in~Newark are among gay men.183
The first community-based organization, Newark Community Project
for People with AIDS, was begun in l988.~~ There has been no GMHC
or Shanti Project to act as a buffer between the affected
communities and the public health system, to blunt the double-edged
sword of the disease and government neglect.
183Ibid
~Ibid.
67
27-986 0 - 90 - 14
PAGENO="0418"
414
New Haven, Connecticut
New Haven has an unusually high number of reported AIDS cases
for its population, 142 cases~ per 100,000 residents.185 In
addition, a high percentage of persons with AIDS in New Haven are
current or former drug users (55%) .~ "There are two illnesses we
are dealing with -- addiction and AIDS. You cannot treat one
without the other," stated one service provider.187 There is an
acute need for all types of housing for this population, but above
all, supportive housing. "[There's) more to the problem than just
putting a roof over a PWA's head."~
The Executive Director of AIDS Project New Haven states that
"Housing remains one of the biggest gaps in services for PWAs."189
The only housing that currently exists in New Haven specifically
for persons with AIDS is a seven-bed house, funded through a
combination of state and private monies.190 No nursing homes in New
Haven accept persons with AIDS.191 Most often, homeless persons
of June 1988. United States General Accounting Office,
AIDS: Delivering and Financing Health Services in Five Communities,
Washington, DC: September 1989, p.58.
~Ibid.
187Telephone interview with Bill McGlowne, Director,
Connecticut AIDS Residence Progam, July 18, 1989.
~Ibid.
189Telephone interview with Jan Hess, AIDS Project New Haven,
July 18, 1989.
`90Telephone interview with Jill Strawn, Connecticut AIDS
Residence Program, July 19, 1989.
191GA0, p.60.
68
PAGENO="0419"
415
with AIDS stay at shelters, or compete with other low income
persons for limited Section 8 vouchers.192 Funding or even
coordination of services by the City of New Haven has been almost
entirely absent.193 One provider suggested the need for the city to
appoint an "AIDS Housing Coordinator" who would plan supportive
residences for persons with HIV-related illnesses.'94
Attempts to develop housing for persons with HIV-related
illnesses have also been impeded by community opposition. In
nearby Fairfield County, Lucy NcKinney -- the widow of
Representative Stewart B. McKinney, who died of AIDS in 1987 --
began developing a residential facility for persons with AIDS.
Although she kept the proposed site a secret, it was eventually
discovered, and community opposition effectively squelched the
project.195 Another New Haven service provider who is developing a
scattered site housing program would not go into any details of the
plan due to fears of the same sort of community opposition.'96
The high incidence of drug addiction among persons with AIDS
in New Haven points up the crucial need for drug treatment
services. The few drug treatment facilities that do exist have
192Strawn, July 19, 1989.
`93Ibid.
194Ibid.
195Telephone interview with Jan Hess, Executive Director, AIDS
Project New Haven, July 18, 1989.
`9~1c~lowne, July 18, 1989.
69
PAGENO="0420"
416
months-long waiting lists.197 The waiting lists dissuade countless
others from even seeking treatment. Addicted persons who continue
drug use because they are unable~to obtain treatment, continue to
be exposed to the risk of HIV infection. One service provider
stressed the need for immediate financial support from the federal
government to create more drug treatment slots. "[We have to) do
something for these people now. . . . Drug treatment now, as opposed
to six months from now. Many of those with AIDS mightnot be
around in six months."198
Finally, there is little or no outreach to persons living on
the streets in New Haven. Particularly hard hit by the AIDS
epidemic are women in the sex industry. These women face an
especially high risk of infection with HIV, but are unlikely to
come forward for treatment or services due to the illicit nature
of their work, and the consequent~ fear of criminal prosecution.~
As one AIDS advocate stated, "[There are] nowhere near enough
volunteers or paid people to implement services [on the
streets]."200
19TIbid.
198Ibid
~Ib~id.
2001bid
70
PAGENO="0421"
417
New Orleans, Louisiana
Barbara Ryan of the New Orleans AIDS Project was pleased that
someone finally wanted to talk about housing issues for persons
with AIDS. Ryan described housing as "our biggest and worst
problem."201 There are only 13 beds for persons with HIV-related
illnesses in New Orleans, all located in a facility called Project
Lazarus, run by the Roman Catholic Archdiocese, and intended for
terminally ill patients.202 Project Lazarus operates continuously
at capacity and maintains a long waiting list.203
The state has not made available any funding for persons with
AIDS, and New Orleans does not have an existing base of social
services to expand upon. The only rental assistance available is
through FEMA funds, which are for one-time only grants. The grantee
must show that, after the initial month, he or she will be able to
maintain the rental payments. This is very difficult to prove for
a person who is too ill to work.
Shelters are: often the only indoor alternative for homeless
persons withAIDS. In New Orleans, congregate shelters are already
inadequate to meet the existing needs of that city's homeless.
Furthermore, rampant ±nfectious diseases in the shelters pose a
particular danger to persons- with -suppressed immune systems.
201Telephone interview with Barbara Ryan, New Orleans AIDS
Project, December 26, 1989.
202Ibid
203Telephone interview with Karen Martin, Travelers' Aid,
December 26, 1989.
71
PAGENO="0422"
418
Shelter residents with HIV-reláted illnesses are not allowed to
stay inside during the day, and must eat on a schedule which often
is inconsistent with their health needs. Finally, many persons,
especially openly gay men, have been the target of both verbal and
physical abuse in the shelters lwhen their HIV status has become
known.204
AIDS service providers in N~w Orleans thus find they have very
little to offer their clients. "We have case management, just no
resources."205 The problem is exa~erbated by the increasing numbers
of persons who come from other states, especially Texas, seeking
what they hope will be a friendbier environment in New Orleans.
Travelers' Aid has had to send at least one client "back home to
his family" out of state, because the city could no provide him
with even the most basic social services or housing.206
Nursing homes in the New Orleans area will not knowingly
accept persons with AIDS, or even those who are HIV-seropositive
and asymptomatic. Ryan described one man, a hemophiliac, who was
asymptomatic but who had a severe arthritic condition due to his
hemophilia. No nursing home would accept him because he was
infected with Sly.207
2.04Ibid.
205Ryan, December 26, 1989.
206Nartin, December 26, 1989.
207Ibid
72
PAGENO="0423"
419
Substance abuse treatment is largely inaccessible to indigent
and homeless persons. There are simply no Medicaid-reimbursable
inpatient facilities for drug users seeking treatment. Yet drug
abuse is an enormous problem among the,homeless in New Orleans --
one study found that 65% of the city's homeless had a history of
substance abuse.208 Untreated, substance abuse will invariably lead
to increased high risk behavior, and the further spread of HIV
infection among this already beleaguered population. It is
important to note that Louisiana does not restrict the sale of
needles and syringes. This has resulted in a low percentage of
reported AIDS cases resulting from infection through intravenous
drug use (5%, compared with 19% nationwide).209
The City of New Orleans' continuing financial woes, coupled
with a political climate in which "AIDS is a hush-hush thing,"21°
have brought about a worsening situation for homeless persons with
AIDS in this city.
208Jackie Harris, Multi-Service Center for the Homeless, as
quoted in American NightT~~~, p.101.
209GA0, AIDS: Delivery and Financing of Health Services in Five
Communities, p.65.
210Telephone interview with Jackie Harris, Multi-Service Center
for the Homeless, July 19, 1989.
73
PAGENO="0424"
420
New York, New York
In New York City, it is conservatively estimated that there
are at least 10,000 persons withiHIV-related illness who are now
without homes, as experts cite a 20-30% seropositivity rate among
the city's 70-90,000 homeless pérsons.2~ A recent report by a
shelter for homeless youth suggests that 6.5% of homeless youth
aged 16-20 are HIV-seropositive, and that the seropositivity rate
has reached 20% among youth who are 20 years old.212 Yet, despite
repeated calls for appropriate hàusing, some ten years into the
epidemic, the City of New York has created only 44 supportive
housing beds, 42 long term care hospital beds, and 120 units of
scattered site housing.213 The Cit~y of New York has made no plans
for housing homeless youth with AIDS.214
Data from the New York City Department of Health AIDS
Surveillance Unit shows that African-American and Hispanic adults
make up 60% of all adult cases of AIDS in New York City. Even more
alarming is the data that shows that 91% of all pediatric cases are
African-American or Hispanic babids, 85% of alldrug users with
AIDS are African-American or Hispanic, and 85% of all adult women
2~Aron Ron, M.D. and David Rogers, M.D., "AIDS in the United
States: Patient Care and Politics," ~edalus, Journal of the
American Academy of Arts and Sciences, Vol. 118, No. 2, Spring
1989.
212"On the Sad Trail of Street Youths, Drugs and AIDS," ~
lork Times, August 1, 1989.
213Data aggregated from the New York City Department of Health,
Task Force on AIDS, Report 1989.
214Ibid
74
PAGENO="0425"
421
with AIDS are African-American or Hispanic. And, despite
prevailing attitudes that AIDS is a white gay male disease or a
disease of African-American and Hispanic drug addicts, nearly 40%.
of African-American and Hispanic men with AIDS in New York are gay
or bisexual.
Homelessness also disproportionately affects people of color.
According to the 1984 report by the New.. York State Department of
Social Services, 57% of homelessfamilieS. are African-American and
32% are Hispanic. Among single homeless.adults, 54% are African-
American and 16% are Hispanic.
For most homeless personswith HIV-related illness, the only
"housing" made available by the city are its mass congregate
shelters, ~..despite a~seri.es of lawsuits which have established a
legal obligation of New York city and State to provide safe,
appropriate emergency housing for each person in need.215 Housing
up to 1000 persons in a single room on cots three feet apart, New
York City's congregate shelters are violent, unclean, disease-
ridden environments. Shower and toilet facilities serve upwards
of s~everal hundred people, at a ratio (when all are working) of one
toilet for:every ten persons and one shower for every 15. The high
incidence of infectious disease, including~tubercul05i5, hepatitis,
influenza, pnewnonia and diarrhea is wellchronicled by clinicians
2151n a pending New York lawsuit, the coalition for the
Homeless and several homeless men are seeking an order requiring
New York City and State to make safe, appropriate housing available
to all homeless persons living with HIV. Mixon v. Grinker, Index
~ 14932-88, New York County, 1988.
75
PAGENO="0426"
422
and epidemiologists. In addition~ violence -- particula~y towards
persons perceived to be HIV-sero~ositive -- is conuinon.~6\
Faced with extremely poor l'iving conditions, the prevalence
of infectious disease, violence and harassment, many homeless
persons avoid the city shelters, choosing instead the parks, subway
tunnels and streets of the city.~ It is commonplace for persons
with HIV-related illness to be "dumped' from both public and
private hospitals to the streets or shelters. In some cases,
hospitals refrain from giving a formal diagnosis of CDC-defined
AIDS because New York State Depar~ment of Health policy prohibits
discharging homeless persons with AIDS unless the person has
secured appropriate housing. One homeless man was discharged from
a hospital to the streets with large open sores on his legs and
feet. Hospital workers told him they'd "seen worse" and gave him
antibiotics, advising him to keep the sores clean. The man, having
been assaulted in city shelters ~n several occasions, ended up
lived in Grand Central Station for months before he received
medical care or housing.217
New York's poor are already p]~agued by an inability to secure
decent housing, food or health care. Now, many of them must
struggle to live with HIV without1 even the most basic services.
Most must rely on crowded city hospital emergency rooms for primary
health care. They have not been provided with even the most
216Ernest Drucker, Ph.D., Octob1er 2, 1988.
21TRalph Hernandez, Testimony lefore the National Commission
on AIDS, Washington, DC, November 21, 1989.
76
PAGENO="0427"
423
rudimentary AIDS education. Most homeless persons with HIV learn
they are seropositive when they are hospitalized seek care for some
related illness, and most must wait weeks if not months for an
examination and tests to learn their HIV status.
In 1985, New lork City opened its Division of AIDS Services
(DAS), to provide case management and housing assistance for
persons with AIDS. However, until 1989 DAS services and housing
outside the City shelters were available only to persons with a
documented CDC-AIDS diagnosis. Currently, housing outside the
shelters is available only for persons with CDC-defined AIDS or
persons with HIV-related illness so severe they are no longer able
to bathe or toilet themselves. Commonly, homeless persons are
rejected by DAS intake workers because they "are not sick
enough."218 In the last month alone, two men with T4 cell counts
under 20 and a woman with HIV-related cervical cancer were denied'
DAS services and referred to City shelters.219
Persons who are provided services are entitled to a special
rental assistance for people with HIV-related illness. However,
the current limit on rental assistance is $480 a month in a city
where rents for a studio or one-bedroom apartment average $650 and
218Charles King, Staff Attorney, AIDS Project of the Coalition
for the Homeless, March 12, 1990.
219Virginia Shubert, AIDS Project Director, Coalition for the
Homeless, March 15, 1990. Persons with normal immune systems
usually have T4-cell counts of 800-1200; a count of under 200
indicates severe immune-suppression.
77
PAGENO="0428"
424
often mount as high as $l500.220 An "exception to policy," a
mechanism whereby higher rental assistance amounts can be approved,
requires lengthy application procedures and entails long waiting
periods. An increasing number of persons with HIV-related illness
are forced out of their apartments due to the large discrepancy
between rents and rental assistance.
A total of only 224 units of supportive permanent housing
currently exist for persons with AI'DS in New York City. Forty-four
of these beds are at Bailey House, a supportive group residence in
Manhattan's West Village. Another 40 are beds in a Skilled Nursing
Facility (SNF) run by the Roman Catholic Archdiocese, also in
Manhattan. The bulk of the existing housing is in city-contracted
"scattered-site housing," operated I~y six different community-based
organizations, these are studio and~ one-bedroom apartments located
for the most part in Manhattan and the Bronx. As yet, no permanent
units designated for people with ~IDS exist in Queens or Staten
Island, and very few in Brooklyn.
The City Human Resources Administration also contracts with
a number of Single Room Occupancy hotels to provide approximately
900 "transitional" housing units for persons with AIDS. In New
York, these are typically small, rat- and roach-infested rooms
which share oathroom and kitcnen facilities. Drug-dealing and drug
use are rampant in these hotels, often with some involvement from
220Melissa Sawin, Coalition for the Homeless Rental Assistance
Program, March 15, 1990.
78/
PAGENO="0429"
425
hotel staff.22' Says one long-time resident of an SRO: "There is
very little opportunity to get your life together in such an
environment because one doesn't live in an. . .SRO. Rather, one
struggles to survive from day to day."222 The City of New York
commonly pays $1000 - $1200 a month to rent each unit from private
for-profit organizations. While the City calls these facilities
"transitional" housing, they are, in real practice, a permanent
placement. There is no City office or personnel designated to
assist homeless people with AIDS in finding permanent housing.
Most residents remain in hotels for months, or even years. Many
PWA5 die in SRO5, still awaiting "permanent" housing.
The City recently announced its intention to make official its
policy of relegating homeless persons with HIV-related illness to
City shelters. Mayor Dinkins, continuing a plan initiated by his
predecessor, has proposed placing homeless persons with severe HIV-
related illness (those with T4 cell counts below 200 or who are in
need of home care) in segregated units within the congregate
municipal shelters. A proposed pilot program would place over 100
homeless men with HIV-related illnesses with other medically frail
men on a segregated wing of an existing city shelter, which houses
221Ervin Marrero, Presentation at the National Conference on
HIV Infection and AIDS Among Racial and Ethnic Populations,
Washington, DC, August 17, 1989.
222Ibid
79
PAGENO="0430"
426
950 homeless men.223 These men would remain in the shelter AIDS
unit until they developed CDC-defined AIDS or were so sick they can
no longer bathe or toilet themselves. The City administration
claims that such "housing" would be temporary, but experience with
general municipal shelters (which have developed into ~
permanent housing for thousands of~homeless New Yorkers) leads most
housing advocates to doubt the transitional nature of the proposed
plan.
There is no plan for caring for adolescents with HIV-related
illness. A disproportionate nur~iber of persons living on the
streets in New York City are homeless or "throwaway" youth. These
young persons are at increased risk for HIV-infection as they often
must depend on prostitution for survival. Moreover, there is a
significant economic incentive for these kids to practice unsafe
sex, as "johns" pay more for sex without condoms. According to one
teenage prostitute, `.. .they'll give you five, maybe ten bucks more
to let `em do it skin-on-skin."224 In a recent survey by Covenant
House, the only shelter for homeless youth in New York City, 6.5%
of their residents tested positive for HIV; the rate increased to
223Special shelter housing would cost $71 per day. In contrast,
scattered site housing costs $65 per day p~ apartment~
224As quoted by Paul Solotaroff,~ "Dead Boys: Fast Sex and Slow
Suicide on the West Side Docks," Village Voice, January 30, 1990.
80
PAGENO="0431"
427
17% among 20 year olds.225 The infection rate is the same among
female youth as it is among males.226
Femalestreet prostitutes are also at high risk of both HIV
infection and homelessness. In a recent study, the Foundation for
-Research on Sexually Transmitted Disease found that 33% of the
~-nearly 1000 female prostitutes they tested were found to be HIV
-seropositive. Just over 44% were either living on the street or
`in tenuous housing situations (living with friends or in hotels) *227
Dr. Joyce Wallace, who headed up the study, estimates that her
survey reached 1 in 10 street walking prostitutes, putting the
number of homeless prostitutes with HIV in New York City at 1500.228
There are currently no publicly funded outreach or education
programs targeted to this population. What services and treatment
exist for poor persons with HIV in New York are largely
inaccessible to these women, who, due to the illicit nature of
their work, are unlikely to seek out the necessary care until they
are already extremely ill.
As in all other aspects of the AIDS epidemic, women with HIV,
especially poor and homeless women, are made invisible in study
after study. In New York City, the percentage of new cases
225"On the Sad Trail of Street Youths, Drugs and AIDS," New
York Tim~m, August 1, 1989.
226Gina Kolata, "AIDS is Spreading in Teen-Agers, A New Trend
Alarming to Experts," New York Times, October 8, 1989, p.1.
227lntervieW with Joyce Wallace, M.D., Foundation for Research
on Sexually Transmitted Diseases, February 6, 1990.
228Ibid
81
PAGENO="0432"
428
diagnosed in women is increasing -- while overall, women represent
13% of all reported cases in the City, the figure jumps to 17% of
cases diagnosed and reported during 1989.229 These numbers are
likely low since a disproportionate number of women with HIV-
related illness go undiagnosed until quite late in their illness.
Approximately 59% of the reported cases of women with AIDS are
intravenous drug users; most are poor women of color, at greater
risk of homelessness.23°
For those women with children, testing positive for HIV is
too often the first step in handing contr~l of their children's
lives over to the city bureaucracies. Most poor women receive
"confidential" testing in city-operated public hospitals; because
confidentiality laws in New York State permit city agencies to
share HIV information, it is not uncommon for hospital workers to
inform the Bureau of Child Welfare (BCW) when a mother tests
positive for HIV.231 This agency nbrmally begins immediate steps
to remove the child from his or her mother. We were told of one
pregnant homeless woman who was tested for HIV in the delivery
room; her newborn was taken by BCW and placed in foster care before
the woman even left the hospital.232~
229New York City Department of Health, AIDS Surveillance
Update, January 31, 1990.
230Ibid 85% of women with AIDS are African-American or
Latina; most come from low-income households.
231lnterview with "Cindy," [a homeless woman with AIDS who
requested anonymity], February 26, 1990.
232Ibid
82
PAGENO="0433"
429
In order to get her children back, a homeless woman with HIV
must first find an apartment with as many bedrooms as she has
children, however, currently, over 75% of all scattered-site
apartments for people with AIDS are designed for single adults or
couples.233 If the woman can find an apartment on her own, the
process of retrieving her child or children from foster care can
take six to nine months. The inequities of the foster care system
became manifest to one formerly homeless woman with HIV when she
discovered that BCW had reimbursed the foster parents of one of her
children for a VCR, but could not muster a furniture allowance for
her to provide a bed for her own child.234
Finally, rampant drug use in New York City has exacerbated
both the AIDS epidemic and the increasing rate of homelessness.
Intravenous drug use is reported to be the route of transmission
in 41% of the cumulative caseload; in 1989, that figure jumped to
46%, and is growing rapidly.235 Yet, for an estimated 200,000 drug
users,236 60% of whom are HIV-seropositive,237 there are only 40,00
33Telephone interview with Lee Kreiling, Coalition for the
Homeless Scattered Site Housing for People with AIDS, March 15,
1990.
3~"Cirid~'," Testimony before tho New York City Council Select
Committee on Homelessness and Committee on Health, November 26,
1989.
235New York City AIDS Surveillance Report, January 31, 1990.
236Health Systems Agency, Substance Abuse Plan Update for 1989-
~ Draft, September 7, 1989, p.4.
2371bid., p.133.
83
PAGENO="0434"
430
treatment slots.238 Waiting li~ts for treatment average six
months.239 An attempt at a city-sponsored needle exchange program
was recently ended by Mayor Dinkins. While the program had served
relatively few people (mostly due to its location in a City office
across the street from police headquarters in downtown Manhattan)
Over half of those who participated in the program entered
treatment, and 52% were already HIV-seropositive.24°
2381bid., p.131.
239Ernest Drucker, Ph.D., October 2, 1988.
240Todd Purdum, "New York City is Out of the Needle Trade," ~y
York Times, February 18, 1990.
84
PAGENO="0435"
431
North Dak~t~
Despite the small numbers of reported cases of CDC-defined
AIDS in North Dakota (24), there isa high level of awareness among
service providers about HIV-related illness and of the related need
for services. Five of the 24 cases of AIDS are still living and
only 75 people in the state have tested positive for HIV. A health
provider in Fargo states that the "window of opportunity" for
serving people with AIDS in North Dakota is still open wide.241
Housing and AIDS service providers and public health officials
alike agree that, although the true numbers are probably higher
than the reported figures, the housing needs of persons with AIDS
are still being adequately met.242
Yet, in recent months, a group of providers has begun meeting
to set up an AIDS Network in the state to coordinate housing and
other services for persons with HIV-related illness. Says Barb
Stanton, a long-time advocate for the homeless, "There's no reason
that the problem that exists in the rest of the country won't
eventually come here. . . .We want to become pro-active rather than
reactive."243 The Prairie AIDS Conquest already acts as a
241Telephone interview with Doug Johnson, Fargo Community
Health, March 16, 1990.
242Johnson; Barb Stanton, North Dakota Coalition for Homeless
People, March 16, 1990; Tina Timmerman, AIDS epidemiologist, North
Dakota Health Department, Division of Disease Control, July 19,
1989.
243Stanton, March 16, 1990.
85
PAGENO="0436"
432
clearinghouse for information on treatment, services and housing
for persons who are HIV-positive.244
There are, however, two impor~ant obstacles which Stanton sees
to development of services and housing for PWAs in North Dakota.
First of all, as in other states, there is a significant amount of
homophobia and "AlDSphobia." The second obstacle prevalent in
other mid- and southwestern states:~Stanton speculates the epidemic
will first appear and grow fastest among Native Americans, since
they are at `the low end of the spectrum economically."245 Due to
isolation on reservations, and extreme poverty, it is likely that
this population will be the hardest~hit and the hardest to reach.246
It is hoped, however, that the realistic, early-intervention
approach in North Dakota will meet with success, and perhaps become
a model for the rest of the nation.~
244Johnson, March 16, 1990.
245Stanton, March 16, 1990.
246Ibid
86
PAGENO="0437"
433
8
~ ~
Phoeni~, A izona
Public health officials in Phoenix put the number of reported
cases of CDC-defined AIDS at just under 800.247 An outreach
coordinator who is conducting a study of the city's HIV-infected
population estimates that the real figures are at least twice
that.248 A caseworker at the Arizona AIDS Project states that a
large and increasing number of their clients are homeless or in
immediate danger of losing their homes,249 and a worker at a clinic
for indigent and homeless persons says it is not unusual for them
to see 3-4 new persons with AIDS each week.250
Funding for rental assistance is administered through a
private non-profit -- the Arizona AIDS Project -- and is severely
limited, forcing providers to limit access to those persons with
full-blown AIDS or disabling ARC.25' Maricopa County maintains an
emergency fund for rental assistance that offers only one month's
rent in any given year.252 The waiting list for Section 8 housing,
for which persons with AIDS must "compete" with other persons in
247Telephone interview with Janet Kenney, Women At Risk Network
(WARN), January 5, 1990.
248Ibid
249Telephone interview with Roy Griffin, Arizona AIDS Project,
January 2, 1990.
250Telephone interview with Linda Hogan, Central Arizona
Shelter Services, January 5, 1990.
251Griff in, January 2, 1990.
252Ibid
87
PAGENO="0438"
434
need of housing assistance, ranges from six months for a single
adult to 3-4 years for families.253
Only one housing project currently exists for persons with
AIDS in Phoenix, a Shanti Project four-plex housing up to eight
persons. Funding for this project comes from a mix of federal and
private monies -- the apartment units themselves are provided
through a federal program to assist the homeless, while rent,
utilities and supportive services are subsidized by Shanti. The
need for the units is so acute that the prospective residents were
determined long before Shanti had final approval for the project.
However, these facilities are only transitional housing -- units
are guaranteed for one year, with an option for only one additional
year.254
For the vast majority of homeless persons living with HIV,
the only options are shelters, al]~eys and dry riverbeds.255 Persons
living in shelters who reveal their HIV status are often subject
to discrimination. Most will be asked to leave by shelter staff.256
Moreover, the confidentiality of persons with HIV is often violated
in Phoenix.257 One shelter worker reported that if the police find
out that someone at the shelter is HIV-seropositive, they will
253Americar Nightmare, p.118.
256Telephone interview with Joan Crawford, Community Housing
Partnership, January 5, 1990.
255Kenney, January 5, 1990.
256Griffin, January 2, 1990.
257Kenney, January 5, 1990.
88
PAGENO="0439"
435
often hatass that person through false arrests and the like until
he or she "chooses" to leave town.258 Nursing homes here, as
elsewhere, will not accept persons who are HIV-seropositiVe.259
Drug treatment is also an enormous problem in Phoenix. It is
estimated that there are 70,000 drug users in need of treatment in
Maricopa County, most of them in Phoenix itself.260 However, there
are only 780 publicly funded drug treatment slots in the entire
state of Arizona.261 Intravenous drug use is widespread *and
increasing. At least two Native American tribes are known to have
large drug-using populations.262 "There is a revolving door between
the reservations and the urban indigents," and treatment for
substance abuse as well as for HIV-related illnesses is wholly
inadequate.263 Both denial and a lack of funding are cited as
reasons for the failure of the Indian Health Service to address the
health needs of Native Americans with HIV.2~
Finally, no appropriate services exist for women in the sex
industry in Arizona, although this population is at extremely high
risk for HIV infection. The Public Health Service ~ accept
258Hogan, January 5, 1990.
259Kenney, January 5, 1990; Griffin, January 2, 1990.
260Kenney, January 5, 1990.
261Ibid
2621bid
263Ibid
264Ibid
89
PAGENO="0440"
436
pregnant IV drug users into their methadone maintenance programs
immediately, but the IV drug of choice for this population is
cocaine, not heroin, so methadone is ineffective.265
"Desperate" is the most common word used by service providers
to describe the situation for homeless persons with AIDS in
Phoenix. "Nothing matches this lack of money. [We have) desperate
needs for housing, food, medical care, everything."2~
265Ibid
266Ibid
90
PAGENO="0441"
437
Pittsburgh, Pennsylvania
Public Health officials estimate that there are 350 cases of
`full-blown" AIDS in Pittsburgh, and from 5,000 to 10,000 persons
who are HIV seropositive. However, since many people from smaller
cities, towns and rural areas in Pennsylvania, West Virginia and
Ohio come to the city for care, one AIDS service provider states
that the numbers of people seeking services are at least one and
a half times the official estimates.267
Providers report that the housing needs of people with
symptomatic HIV infection in the Pittsburgh area fall into three
general areas: 1) emergency overnight housing for people who come
from outside the city for health care; 2) low rent housing for
those permanent residents who are still independent, yet who have
either lost their employment or depleted their savings to the point
where they can no longer remain in their housing; 3) supportive
housing and skilled nursing facilities for persons with advanced
HIV-infectiOn who need continued home care.2~
Yet, at present, only one program has been established by a
private non-profit organization, and that program houses only three
people with HIV-related illness.269 The Pittsburgh AIDS Task Force
maintains a limited "emergency fund" to provide financial
267~ Telephone conversation with Kerry Stoner, Executive
Director, Pittsburgh AIDS Task Force, October 1989.
26~Ibid.
269Ibid
91
PAGENO="0442"
438
assistance to clients; workers there confirm that by far the most
frequent request is for rent and~utilities.70
In addition, the Task Force~ assists out-of-town visitors in
finding inexpensive overnight housing when they travel to
Pittsburgh for care. However, it is impossible for them to find
all those in need, or to always locate the housing necessary, and
this service is necessarily performed on a "hit and miss" basis.
Persons with HIV-related illness .~who are "missed" often end up in
a temporary congregate shelter during their stay in Pittsburgh.
In addition, caregivers who acdompany persons seeking medical
services to Pittsburgh face a similar lack of temporary housing.271
While skilled home care and nursing home beds are available
to persons with HIV-related illness, . Skilled nursing facilities
willing to care for persons who are experiencing the deteriorating
mental health and dementia frequently associated with HIV-related
illness are cited as one of tI~ie most pressing needs in the
Pittsburgh area.272
Lack of funding is cited as the major barrier to the
development of housing and services for people with HIV in
Pittsburgh. One private AIDS service provider in Pittsburgh
commented on the high level of cooperation between the public and
private sectors in their response to the AIDS crisis, but observed
270Client services representative, Pittsburgh AIDS Task Force,
October l989~
271Stoner, October 1989.
2T2Ibid
92
PAGENO="0443"
439
that funding in the area lags far behind initiative and cooperative
efforts. No money has been made available by local, state or
federal government for housing for people with HIV-infectiOn. "The
level of denial has never been broken. In Pittsburgh, people hear
that there are `only 350' cases and don't understand why we need
more money," stated Kerry Stoner of Pittsburgh AIDS Task Force.2Th
In response to the critical housing and service needs of
people with HIV in their community, a consortium of 23 AIDS and
housing service organizations in the Pittsburgh area are meeting
to produce a study and proposals on the housing resources for and
needs of people with HIV-related illness. Their report should be
released later this year.
273 Ibid.
93
PAGENO="0444"
440
Portland, Oregon
There are an estimated 3000 homeless persons in Portland. No
one knows how many of these persor~s are living with HIV. What is
known is that approximately 35% of~these~persons have a history of
substance abuse and they are, therefore, at great risk of HIV-
infection.274
The only `housing" available for homeless persons with AIDS
in Portland is a hospice, Juniper house, with 10 beds.2Th Another
facility, Hospice House, is not designed exclusively for persons
with AIDS, but approximately 11% of~ its residents at any given time
are persons with HIV-related illnesses.276 Hospices, however, are
not housing p~ ~ but nursing hbmes for persons with terminal
diagnoses.
"There is a terrible lack of residential f~acilities for PWAs
in Portland," states one provider.2~ "Once someone tests positive
for HIV, they are likely to lose their job, insurance, health care
and housing."278 Moreover, support~ service for persons with HIV-
related illnesses are limited, and eligibility criteria
restrictive. According to a volun~eer case worker at the Cascade
274Timothy Egan, "Homeless Addicts in Oregon Find Aid in
Restoring Lives,' New YorK Times, December 12, 1986.
2T5Mary Tegger, Burnside Community Council, July 25, 1989.
276John McClure, Admissions Director, Hospice House, July 24,
1989.
2~Tegger, July 25, 1989.
2T8Ibid
94
PAGENO="0445"
441
AIDS Project, "The vast majority of our funding comes through the
[state] government, and can only be administered to people who fall
within its definition of high risk categories.... The government
sees some people as possessing the right to certain services while
others fall through the cracks.,,2m In fact, the only services that
the Cascade AIDS Project can offer their clients are a very limited
emergency fund, and assistance in applying for regular Section 8
housing 280
An innovative needle exchange program for intravenous drug
users has been developed in Portland. This program, designed to
slow the spread of HIV infection among substance abusers, has
proved enormously popular. In its first three months of operation,
the needle exchange served some 250 people, as many as were
expected to seek help in the entire first year.28' A complete study
will not be released until December 1990.
Another innovative program to help homeless substance abusers
stay drug free (thereby greatly reducing their risk of infection
or re-infection with HIV) is Everett Hotel. This 29-unit
supportive housing program operates on the premise that it is
"impossible to stay clean and sober when you don't have a home."282
A Portland State University study showed that six months after
27~Susan Starr, Cascade AIDS Project, July 24, 1989.
28mIbid
28mpatrick O'Neil, "Needle Exchange Option Proves Popular,"
The Oregonian, February 15, 1990.
282Egan, December 22, 1988.
95
PAGENO="0446"
442
leaving the program, nearly half of those surveyed remained drug-
free, a considerably higher success rate than the 10-15% typical
of programs which do not offer housing.283 However, while this
program is an excellent model, with over 1000 homeless drug users,
it can meet only a fraction of the need.
Most ~-homeless persons, including homeless persons with HIV-
related illness, have no option other than emergency shelters.
The only policy developed by Portland shelters with reference to
residents with AIDS is a "proocol of precautions for shelter
workers who serve people at risk.tt2~' As one service provider said
simply, `there are never enough services. ,,285
2~Beverly Curtis and Richard Meyer, Oregon Shelter Network,
March 1989.
285McClure, July 24, 1989.
9~
PAGENO="0447"
443
Providence, Rhode Island
An increasing number of people with AIDS in providence are in
need of housing at a time when that city is experiencing a major
crisis in housing. Housing prices have quadrupled in the last ten
years alone.2~ The current waiting period for a conventional
public housing unit is 12 to 18 months; for Section 8 certificates,
the wait is over two years.287
As of January 31, 1990, there have been alipost 265 reported
cases of AIDS in Providence; of these a little over one-third are
current or former intravenous drug users.2~ Housing for persons
with "dual diagnoses" (HIV and drug addiction, or HIV and mental
illness) is especially lacking.289 Nursing homes in Providence
currently refuse to accept persons with AIDS, and few are even
contemplating making preparations for doing so in the future.290
One boarding home for persons with HIV-related illnesses who
are drug free does not currently operate at full capacity, due
largely to a lack of awareness of the program.291 The apartment
housing sponsored by the Rhode Islaiid Project AIDS, consisting of
2~Ellen Marino, Director of Client Services, Rhode Island
Project AIDS, December 27, 1989.
287Telephone interview with Betty Lou Gomes, Providence Housing
Authority, March 12, 1990.
2~Telephone interview with Scott McCombs, Rhode Island State
Department of Health, March 20, 1990.
289Marino, December 27, 1989.
290Ibid
291Ibid
97
PAGENO="0448"
444
two 3-bedroom apartments, is facing a serious "crunch" at the end
of Fl 1989-90: the state portion of their funding is a one-year,
nonrenewable grant.292
A privately funded scattered site program is being developed.
Originally designed for persons with chronic mental illnesses, this
plan is being adapted to the needs of persons with HIV. Under this
program, the apartments within the same neighborhood are shared by
small groups. The shared apartment living is designed to foster
a supportive community environment for those affected. This
program some 70 persons, approximately 10 of whom have self-
identified as HIV-seropositive293
In the shelters, staff have recently been seeing a sharp
increase in the number of persons with HIV-related illnesses.294
However, many shelter residents in Providence are reluctant to
self-identify because of discrimination against persons perceived
to be HIV-positive. These persons often never gain access to any
services until they are hospitali~zed.
All the providers surveyed agreed that the most acute need
was for "broad-based supportive services to keep people housed, to
stabilize their lives."295
292Ibid
293William Haynes, Director, Lost Five, January 4, 1990.
294Lyla Yates, Salvation Army,' December 1989.
295Haynes, January 4, 1990.
~
PAGENO="0449"
445
In Richmond, Virginia, persons tested at STD clinics have been
found to have a 3% HIV-seropositivity rate, while a clinic for
homeless persons has found a 12% seropositivity rate among those
it serves.296 Currently, there are only three units of designated
housing for homeless persons with AIDS, provided by a private, non-
profit group.297 A July 1989 report, issued by a task force led by
the United Way and the American Red Cross, lists housing among the
most serious unmet needs in the community and calls for housing
assistance, home health care and support services, and development
of appropriate non-medical residential care facilities for adults,
adolescents and children with HIV-related illness.298 The high rate
of tuberculosis in Richmond shelters (40% in one shelter) is a
likely indication of a concomitant high rate of HIV infection among
the homeless.2~
Lack of housing for homeless persons with HIV in Richmond
relegates these persons to shelters and single room occupancy
hotels. In the shelters, persons with compromised immune systems
are especially vulnerable to the rampant infectious disease found
296Telephone interview with Michael Holland, Virginia
Department of Fieaiti~, August 14, 1989.
297Sue Capers, Virginia Coalition for the Homeless,
correspondence, May 1989.
298lnformatiOn aggregated from the Greater Richmond AIDS Impact
Task Force Report, July 1989.
2~Telephone interview with Dr. Januzzi, Director, Crossover
Clinic, January 5, 1990.
99
27-986 0 - 90 - 15
PAGENO="0450"
`1'
446
there, including tuberculosis.300 Furthermore, on several occasions
shelter staff have "panicked" upon learning that one of their
clients was HIV-seropositive, although educating staff about how
HIV transmission has helped allay those fears.301
Other persons languish in SPOs without support services or
care until they are "sick enough" to be hospitalized. One service
provider knew of three persons with HIV living in substandard
welfare hotels without services who had died in the last year.302
Virginia State funding matches Federal funding patterns. It
goes solely to education, with no support for direct services.303
At the same time, more and more~agencies are applying for AIDS-
related funding, badly stretch~ing the available funds. In
addition, those agencies new to AIDS services tend to use the money
for education, rather than for needed support services and housing.
Drug treatment facilities in~Richmond, as elsewhere, are also
severely lacking. "Substance abUsers slip through the cracks --
they are not able to get treatment before their situation is
acute."304 Obtaining treatment for HIV-related illness is also
difficult for drug users, as "the iroblem of biases comes into play
343Teleprione interview with M. Pagnoni, independent homeless
advocate, July 25, 1989.
301Januzzi, January 5, 1990.
302Pagnoni, July 25, 1989.
303Shanz, January 5, 1990.
304Shanz, January 5, 1990.
100
PAGENO="0451"
447
as another possible factor for some patients not receiving the
treatment they need."305
Service providers in the Richmond area spoke of "bias,"
"panic," "NINBY [Not In My Back Yard]," "community opposition," and
"fear," and reported that the struggle to develop services and
housing for persons with AIDS has been difficult. In one extreme
example, a homeless mother with HIV and her newborn baby were
"dumped" from a hospital to the streets, when "the hospital staff
freaked out about her HIV status."306
As stated in the July 1989 Greater Richmond AIDS Impact Task
Force report, ".... [M]any people are biased regarding the innocence
or guilt of the disease, [which] may be a contributing factor to
the shortage of housing. ,,307
305Greater Richmond AIDS Impact Task Force, ~gpprt, p.30.
306Telephone interview with Norma Shanz, Executive Director,
Fan Free Clinic, January 5, 1990.
307Greater Richmond AIDS Impact Task Force R~pg~, p.27.
101
PAGENO="0452"
448
St. Louis,~ Missouri
"The need for housing [for PWAs) is critical. Right now, we
are managing, but in a year we wdn't be. It's like a booth in our
hands," says Sue Taylor, former director of the only housing
program for persons with AIDS in St. Louis.308 She is frustrated by
what she perceives to be the failure of government officials and
private providers alike to develop long range planning for the AIDS
crisis. "We bury our heads in the sand," she says, "because we
expect a negative reaction from tile public."309
Six months after our initial~interview with Taylor, we spoke
again with her in her new capacity at the city Department of
Homeless Services. She noted the particular difficulty of getting
pre-existing homeless advocacy and~service providing organizations
to work with newer AIDS service providers. A lack of understanding
of the illness and discrimination exacerbate the problem. She
quoted several shelter operators' response to homeless persons with
AIDS: "Can't they wear badges so we know to stay away from them?
Aren't these people sorry for what they've done [to contract the
virus)?"310
The State and Federal funding in St. Louis, as in other
cities, is targeted mainly for education and research, not for
direct services. Meanwhile, the numbers of persons with HIV-
308Telephone interview with Sue Taylor, St. Louis Department
of Homeless Services, July 20, 1989.
309Ibid.
310Taylor, January 2, 1990.
102
PAGENO="0453"
449
related illnesses is increasing at a sharp rate, with many persons
returning to St. Louis from New York, Sari Francisco and Houston
after their diagnosis.311 Exact numbers are impossible to determine
as even the City Department of Health estimates an underreporting
rate of anywhere from 100 to 200%.
Doorways, a supportive scattered site apartment program
consisting of six 2-bedroom apartments, remains the only housing
for persons with AIDS in St. Louis. Doorways also operates a
rental assistance program for approximately 60 persons. The
organization is privately funded since "there is no city-wide
policy for dealing with the AIDS crisis, and no funding has been
earmarked for housing of homeless [persons with AIDS]."312
According to Taylor, health care for low income persons in
Missouri is "lax."313 Anecdotal evidence suggests an increase in
"dumping" cases -- persons being discharged from the hospital to
the streets or shelters. Taylor calls it an "open secret" that EMS
workers regularly discharge persons with AIDS from the hospitals
to abandoned buildings. One man was "dumped" in the middle of the
night from the VA hospital to a shelter, wearing only his
paj amas 314
311Taylor, January 2, 1990.
312Amy Ziegler, St. Louis School of Law, February 27, l989~
Taylor, March 2, 1990.
313Taylor, July 20, 1989.
314Taylor, January 2, 1990.
103
PAGENO="0454"
45O
Denial and discrimination are major factors in St. Louis.
Recently, when the United Way announced a substantial grant to the
Doorways program, they received reams of hate mail.315 Taylor
asserts that only when "enough" PWAs become homeless will this
issue be addressed responsibly.316
3151bid
3161bid.
104
PAGENO="0455"
451
san Francisco, California
Even San Francisco, which has made perhaps the most ambitious
and comprehensive effort to house persons with AIDS, is not meeting
current need. San Francisco has just over 100 beds in programs for
homeless people with HIV-related illness, but the city itself
acknowledges that there are atleast an additional 300 people with
AIDS and other HIV-related illness in need of supported housing,
and that, given the pace of the epidemic, that number will increase
dramatically.317 Advocates estimate that there are currently 700
persons with HIV-related illness in the barrack shelters or on the
streets in San Francisco, and report that "while the city has made
a good faith effort, there is much to be done."318
In the last year alone, three persons are reported to have
died on the streets of AIDS-related conditions, and advocates for
the homeless speculate that many more deaths went unreported.319
Two years ago, Bob Prentice, Project Director of the Health Care
for the Homeless program of the San Francisco Department of Public
Health has this to say about the problem: "We can expect the
numbers to grow. The epidemic is spreading more now to people who
had already been living on the margins, so with the diagnosis and
3170ff ice of the Hayor, Beyond Shelter~ 7~ 1jpmeless~laP. foL~Bri
~~pc~isc2, Review Draft (San Francisco: Office of the Hayor, August
1989)
318Telephone interview with Michael Lee, San Francisco AIDS
Foundation, August 25, 1989.
319Bi1l Kisliuk, "Homeless Death Toll Tops 100 for Second Year
in a Row," Tenderloin Timfm (San Francisco), January 1990.
105
PAGENO="0456"
452
debilitation that follows, the chances that people are not going
to have stable housing are increased."320
One thing that makes San Francisco's response unique is that
the majority of funding for housing programs has come from state
and local monies.321 In the early 1980s, as the AIDS epidemic was
first manifesting itself, the municipal government channelled
millions of dollars to community-based organizations, accounting
at one point for up to two-thirds of~the budgets of San Francisco's
two largest AIDS service providers.322
The housing for persons with HIV-related illness that
currently exists in San Francisco covers a broad range of options,
but, as in many other communities, is available only to persons
with AIDS or severe ARC.323 Shant~i Project provides 12 flats
housing 47 persons, who must be drug free and contribute 25% of
their monthly income towards rent~.324 The Catholic Charities
administers two group homes: Peter Claver Community which houses
28 men and four women, and Rita daCascia House- which houses women
with HIV-related illness and their Children. Peter Claver is a
building with 32 one-bedroom apartmehts, while Rita daCascia is a
quoted in John Godges, "AIDS in Our Streets -- The Second
Wave: The Homeless," ~an Francisco Catholic, March 1998.
321New York AIDS Consortium, ~lipportive Housing Survey, October
1989, p.12-13.
322Catherine Woodard, "Model City Losing AIDS Fight," Newsy,
September 5, 1989, p~8.
323New York AIDS Consortium, October 1989.
324Ibid
106
PAGENO="0457"
453
large four-bedroom house. The vast majority of residents in both
facilities have a history of substance abuse and are offered
intensive case management on site. All residents receive either
federal disability benefits or "General Assistance' (municipal-
sponsored income maintenance) monies and are required to allow
their money to be managed by project staff.325
The San Francisco AIDS Foundation has also established a
variety of mechanisms for providing emergency transitional housing
for homeless persons with HIV-related illness. "Hotel vouchers"
f or one-week stays in SRO5 are offered to homeless persons with
AIDS or ARC whose income level is under $700 a month.326 An
emergency housing flat -- a five bedroom apartment that normal
houses eight persons, has had as many as 10 occupants at one time.
Unfortunately, the number of people in such a small space creates
a stressful and therefore unhealthy environment for persons with
HIV-related illness. Average length of stay is approximately two
months, and most person are on Shanti's waiting list for housing.327
Finally, SFAF operates a roommate referral system which has met
with limited success.328
According to Michael Lee of the San Francisco AIDS Foundation,
the numbers of persons with AIDS in need of housing are growing
325Ibid
326Lee, August 24, 1989.
327Ibid
328Ibid
107
PAGENO="0458"
454
constantly, and "over the next five years, the problem is only
going to get worse because no provisions are being made for [the
creation of affordable housing."329 Furthermore. much of the
existing housing stock is being threatened by redevelopment.
According to Lee, while during 1988, the SFAF averaged eight to
nine persons a day needing housing assistance, during 1989, the
number was consistently over 10 and at times far greater.33°
The October 17, 1989 earthquake, disproportionately damaging
to the point of condemnation the SRO5 and other low-income hotels
in the Tenderloin (600 units of housing were rendered
uninhabitable), has further reduced the existing resources for all
homeless persons.33' According to Lee, the much publicized FEMA
monies which Congress approved after the earthquake were directed
only to persons who had permanent housing before the quake.
The numbers are fast outgrowing the resources of other support
services as well: there are six-week waits for appointments at a
municipal hospital's AIDS clinic, and, as in New York, most AIDS
service providers are experiencing difficulties both in fundraising
and in recruiting volunteers.332 According to one doctor in San
Francisco, "The San Francisco model was never part of the bone fide
329Ibid
330Ibid.
33'Lee, March 19, 1990.
332Woodard, September 5, 1989.
108
PAGENO="0459"
455
health care system. That's all well and good for a while, but how
can it possibly be sustained with these numbers?"333
Moreover, even in San Francisco, with its reputation for its
compassionate response to the AIDS crisis, inhumanity and
"AlDSphobia" are evident. In a much publicized incident in 1988,
a homeless man with AIDS was ejected from a fast food restaurant
and died on the sidewalk outside.334 Persons with HIV living in
SRO5 and shelters are still subject to verbal and physical abuse.
Many who receive meals through "Open Hands," an food program for
persons with AIDS, must ask that their packages be left at the desk
of the hotel, and later retrieve it in secret so as to avoid
harassment from other residents.335
Despite the pressure being put on the San Francisco system,
it still serves as a model for the rest of the country: "Health
experts say San Francisco's problems should be a warning to the
rest of the nation that communities can't cope with AIDS without
federal and state help."336
333Constance Wofsey, M.D., as quoted in Woodard.
334Letters, Tenderloin TIio8~, February 1988.
335Lee, March 19, 1990.
33~Woodard.
109
PAGENO="0460"
456
Seattle, Washington
Seattle's largely successful efforts to meet the housing needs
of its citizens with HIV-related~ illness stem in part from the
early recognition on the part of city officials as well as of
community-based providers that, "while many PWA5 have needs for
assistance beyond housing, no need can be met efficiently or
humanely in the absence of a safe and secure permanent home."337
Seattle has established systems in which the public sector and
private non-profit groups work~ together to provide rental
assistance, housing referrals, and supportive housing for persons
at all points along the continuum of HIV-related illness.
Over 95% of persons with AIDS in Seattle are gay white men.
This fact, coupled with a long history of cooperation between the
gay community and the City and County governments, have facilitated
the development of a broad-based network of service and housing
providers, coordinated by the Northwest AIDS Foundation (NWAF), the
central case management organization in the city.338 NWAF has
brought together city and statet housing agencies, the State
Department of Health, several chu~ches, as well as private non-
profit housing providers to support a full range of residential
care, from apartments to nursing homes and hospices.339
337Kurt Wuellner, 1988 North~iest AIDS
Report, Seattle, WA, February 27, 1989, p.23.
338GA0 report, September 1989, p.67.
339NwAF, p.3.
110
PAGENO="0461"
457
Of the estimated 500 persons living with CDC-defined AIDS in
Seattle during 1988, approximately half, or 250, requested some
sort of housing assistance NWAF. NWAF was able to provide some
type of assistance to 190 of those persons, or just over 75%~340
This assistance was in the form of independent housing (100), long
and short term residential care (29), rental subsidies (43) and
hospice care (18) P341
There are gaps in the NWAF network, however. Because their
resources are limited, NWAF's services are only available to those
with CDC-defined AIDS. Therefore, many persons with HIV-related
illnesses go both uncounted and unserved.
In addition, intravenous drug users, who comprise the group
of Sly-infected persons most susceptible to undercounting, are also
those least served by the existing network facilities.342 The
largest gap in NWAF's network of care is for persons with dual
diagnoses -- the supervision and intensive care that many of these
persons need is not currently available in any of NWAF's housing
options.343 Moreover, the estimated unmet need for housing for IV
drug users living with HIV may fall short of the true figure. One
study found that HIV-seropositivity among over 1200 intravenous
340NWAF, p.15, Appendix.
341Ibid.
342Telephone interview with Andy Kruzich, formerly of NWAF,
August 30, 1989.
343NWAF, p.20.
111
PAGENO="0462"
458
drug users in Seattle and Kings County was almost ~ This same
study showed that a significant number (33%) of the intravenous
drug using population surveyed were self-identified gay or bisexual
men.345 This suggests that many of the Seattle AIDS cases listed as
"gay men" may conceal the presence of intravenous drug use as a
transmission route.
Experience in other cities indicates that the numbers of
substance abusers with HIV will likely grow exponentially without
some kind of immediate intervention. Consequently, Seattle's
Department of Health has implemented a needle exchange program,346
and is expanding its efforts to slow intravenous drug-related
transmission.347
344R. Wood, et al, `HIV Preval1ence Among Different Groups of
Intravenous Drug Users in Seattle, Washington," Abstract, V
International Conference on AIDS, June 4-9, 1989, Nontreal.
345Ibid.
346Kruzich, August 30, 1989.
347GA0, AIDS Delivering and Financing Health Services in Five
communities, p.66-67.
112
PAGENO="0463"
459
TESTiMONY FOR THE SUBCOMMITTEE DL' ~-~~L- ~- (~tv~v-\ucrN. D~~L:
w~- (BANKING. FINANCE, AND URBAN AFFAIRS ,-~-.
BY
JAMES A JOHNSON
EXECUTiVE DIRECTOR: BEYOND REJECTION MINISTRiES, iNC.
P.O. BOX 2154, HEMET. CA. 92343
1~-8OO-~9G6 -AIDS
MR. CHAIRMAN:
I AM DEEPLY MOVED AND iMPRESSED AS -I SEE MORE AND CONTINUED
iNTEREST ON ALL LEVELS OF GOVERNMENT WITH CONCERN FOR
PERNONS WHO SUFFER FROM HIV DISEASE.
HAVING WORKED WITH MANY HUNDREDS OF PERSONS WITH HIV DISEASE
THESE PAST YEARS AND REGRETFULLY BURYING SEVERAL HUNDRED OF
THEM, I HAVE LEARNED MANY THINGS ABOUT LIFE, AND DEATH. ONE
THING I HAVE LEARNED IS THAT LIFE IS VERY FRAGILE. SEVENTY
YEARN OR EIGHTY YEARS IS A VERY SHORT TIME. TWENTY OR
THIPTY YEARS IS ALMOST A BLINK OF HISTORY'S EYE.
A NUMBER OF YEARS AGO, ABOUT HALF WAY IN THE HISTORY OF THE
DISEASE. MY FIRST FRIEND DIED. I WAS AT A BUS STATION IN
MEOPORD OREGON. I VOWED THAT IF AT ALL POSSIBLE I WOULD
NEVF.R ALLOW ANOTHER F~-i-E~ TO DIE OF AIDS ALONE.
AS TIME WENT ON I FELT THE NEED TO BE WITH THOSE WHO HAD
BECOME HOMELESS DUE TO THIS DREADFUL DISEASE. NOT KNOWING
MUCH ABOUT HOW TO CONNECT J~iY DESIRE TO HELP WITH REALITY OF
CIRCUMSTANCES, I FLEW TO NEW YORK AND VISITED MOTHER
THERESAS HOSPICE IN THE VILLAGE. I LEFT WITH AN
UNDERSTANDING OF HOUSING AND CONCEPT OP DWELLING THAT NY
REAL ESTATE CARRIER AND TRAINING HAD LEFT VOID. I RETURNED
TO CALIFORNIA AND STARTED PROViDENCE HOUSE.
FOR GOOD OR BAD PROVIDENCE HOUSE BECAME THE FOCUS OF MUCH
ATTENTiON. DOCUMENTARIES BY NBC, CBS, DUTCH TV AND OTHERS
WALKED OFF WITH A LIST OF AWARDS FOR THEIR COVERAGE OF MY
WORK. NBC'S EMMEY AWARD WINNING DOCUMENTARY "SOMEPLACE LIKE
HOME" PORTRAYED THE LIFE AND CIRCUMSTANCES OF A FAMILY WITH
A SON WHO HAD BEEN AN IV DRUG USER, LONG BEFORE DISCUSSION
IN THIS AREA WAS FASHIONABLE EVEN IN AIDS CIRCLES. WHILE A
PEOPLE MAGAZINE ARTICLE LAUNCHED THE MINISTRY INTO NATIONAL
POCUS. LOCAL GAY ACTIVIST~LAUNCHED A WELL HIDDEN AGENDA TO
CLOSE PROVIDENCE HOUSE BECAUSE THEY FOUND OUT THAT I HAD
CHOSEN TO DEVELOP MY HETEROSEXUAL IPEN~'Y~ AND LEAVE THE
HOMOSEXUAL SUBCULTURE *
NEVERTHELESS WE CONTINUED TO OPERATE LONG AFTER A MEDIA SLAM
AGAINST OUR WORK.
PAGENO="0464"
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PAGENO="0466"
AIDS Foundation of Chicago
April4, 1990
462
The Honorable Henry B. Gonzalez, Chair
Subcommittee on Housing and
Community Development
U.S. House of Representatives
2413 Rayburn House Office Building
Washington, D.C. 20515
Dear Chairman Gonzalez:
Please accept the enclosed statement on H.R. 3423
and include it in the official record of testimony
presented at your subcommittee's hearing held
Harch 21, 1990.
The AIDS Foundation of Chicago appreciates this
opportunity to address the proposed AIDS Housing
Opportunity Act.
Thank you for your consideration.
Very truly yours,
~
Andrew D. Deppe
Director of Public Affairs
cc: members of House Committee on
Banking, Finance and Urban Affairs
Enclosure
1332 N. Ilalsied Street, Suite 303
Clicag. Illituis (0622
312 642-5151
FAX 642-3378)
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PAGENO="0467"
463
I~~C
AIDS Foundation of Chicago
TESTIMONY BEFORE THE HOUSE SUBCOMMITTEE
ON HOUSING AND COMMUNITY DEVELOPMENT
RE: H.R. 3423, AIDS AND HOUSING OPPORTUNITY ACT
SUBMITTED BY ANDREW D. DEPPE, DIRECTOR OF PUBLIC AFFAIRS
AIDS FOUNDATION OF CMICAGO
On behalf of over seventy-five agencies that provide
AIDS-related education, health care and social services across
the Chicago area, the AIDS Foundation of Chicago (AFC) strongly
supports the AIDS Mousing Opportunity Act and recommends that
it be considered as an amendment to the Omnibus Mousing Bill.
Current figures from the Centers for Disease Control (CDC)
indicate over 120,000 officially reported cases of AIDS since
the beginning of the epidemic. Future predictions, however,
are even more sobering. In 1992 alone, over 80,000 new AIDS
cases are expected to be diagnosed, and CDC estimates that
between 700,000 and 1,100,000 Americans are currently infected
with HIV (the virus widely believed to cause AIDS).
AFC advocates a partnership between the public and private
sectors in responding to AIDS and MIV. In fact, our Service
Providers Council brings together representatives from
community-based health care providers, AIDS educators,
hospitals, social service agencies and government officials to
address public health policy issues and coordinate delivery of
AIDS-related services across the Chicago area.
In addition to nursing home care, one type of service that
is sorely lacking for individuals and families affected by AIDS
and HIV infection is adequate housing. M.R. 3423 would help
provide this most elemental level of care for people with AIDS
(PWA5) and their families, by creating residences for those who
otherwise would be homeless. This bill represents a vitally
important initiative to begin addressing serious gaps in the
continuum of care available to people affected by AIDS and MIV.
Most importantly, M.R. 3423 proposes to respond to housing
needs in a variety of ways, in order to reduce the soaring
costs of inappropriate and unnecessary hospitalization of
people with AIDS-related illnesses. Through new housing
- more -
1332 N. Haisted Street, Suite 303
Chicago, Illinois 60622
312/642-5454
(FAX 642-3378)
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464
AIDS Foundation of Chicago
TESTIMONY ON H.R. 3423
Page two
placement services, short-term shelter care, and longer-term
residential facilities, H.R. 3423 will effectively reduce the
increasing burden of excessive hbspital costs on the federally
supported Medicaid system.
Again, on behalf of Chicago area AIDS service providers,
AFC urges support for H.R. 3423,: the AIDS Housing Opportunity
Act. This measure will improve the continuum of care available
to PWAs and their families, provide much-needed assistance to
non-profit housing agencies and local governments, and
effectively save federal Medicaid dollars at the same time.
Thank you for this opportunity to express our support for
the AIDS Housing Opportunities Aàt.
#
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465
OPENING STATEMENT FOR
THE HONORABLE CHALMERS P. WYLIE
HEARING ON "HOUSING FOR PERSONS WITh AIDS"
will be very brief, Mr. Chairman. I appreciate the timeliness of this hearing on
housing for persons with AIDS, particularly as the Subcommittee nears the time for
marking up omnibus housing legislation. I think the number of the witnesses
willing to appear hear today makes a strong statement in regard to the dimensions
of the problem of housing persons afflicted with Acquired Immuno-deficiency Syn-
drome. The tragedy of their illness is unfortunately exacerbated by the difficulties
these individuals face in trying to find decent shelter. Therefore, it is incumbent
upon the Subcommittee to find out more about the problems of housing for per-
sons with AIDS.
I must be frank, Mr. Chairman, in saying that I am not really familiar with the
many complications and problems faced by those individuals with AIDS who are
looking for housing. Let me say that I do want to find out more, though. I want to
complement our colleague, Peter McDermott, on his hard work in putting together
his bill, the AIDS Opportunity Housing Act. I think that this legislation constructively
bringd into focus the housing problems of persons with AIDS. I must say that the
proposed authorization level of $250 million dollars annually appears somewhat
unrealistic, given current budgetary constraints. However, that does not diminish
my recognition of the severity of the problem.
I look forward learning a great deal more, based on the testimony of our
witnesses. Thank you, Mr. Chairman.
March 20, 1990
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PARxI~AND MEMORIAL HOSPITAL
ANNUAL REPORT 1989
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467
PARKLAND ~ MISSION
Parkland Memorial Hospital is operated by the Dallas County
Hospital Distri Ct and is the primary teaching hospital of The
University of Texas Southwestern Medical School. It is the
county ~ only public hospital. Its nationally recognized centers
of medical excellence attract referral patients while giving
Dallas County residents access to the highest standards of care,
regardless of ability to pay.
In addition to providing community service through health-
related programs, Parkland cooperates with the medical school
in providing educational and clinical training programs for
medical students, physicians, nurses, allied health professionals
and other hosp ital personnel. Parkland additionally cooperates
in clinical and basic research to advance medical knowledge
and improve patient care.
Parkland `s goal is to provide patient-centered services that
acknowledge each patient's value system. As alwals, we will
measure the quality of these services and continue to develop
innovative methods to improve quality.
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468
Parkiand Memorial Hospital
Dallas County HthspitalDistrict
1989 Annual Report
1~
Introduction
2
Independence
5~
Messages
9~
Philanthropy
11
Beginning of Financial Section
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469
IWTRODUCTION
It took a long time before old age got close enough to slow down Doviejones. She quit working a few years ago only
because her 67-year-old son had insisted upon it. A pediatrician, he lives in Los Angeles. Mrs.Jones is 85 and lives in the
same South Dallas bungalow that she and her~ate husband purchased 44 years ago.
As long as her health holds out, she plans to continue living there, tending her plants and sewing.
And she will, too, with the help of Parkland Memorial Hospital, where health care is patient centered and acknowledges
each patient's ~wlue system. With Mrs.Jones, as with most of us, it is the desire to remain independent. As part of this year's
annual report, Mrs.Jones' story illustrates one facet of Parkiand's health-care system and the independence it fosters.
The story about Mrs.Jones and the patient-care centers that treat patients like her starts to your right in the annual
report's special subsection of small pages. For information about.Parkland's year-end analysis and messages from its
officers, please begin reading the report's basic text on page 2 of the large pages.
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JM)EP!Nl)ENCE 2
Just about everyone wants to live as independently as possible, but perhaps the most treasured form of independence is
being free from the physical restrictions of one's own ill health or broken body.
At Parkland, this independent spirit is encouraged through a high-touch involvement in the patient's treatment.
After the patient goes home, the involvement may transcend hospital walls by coordinating with community agencies to
assist the patient with home care, meals or other aid.
Another form of outreach by Parkland won't even wait until the patient comes to the hospital. The hospital will be
locating Community Oriented Primary Care clinics in neighborhoods suffering extreme rates of illness and death. The
clinics will begin bringing primary, preventive and public health services directly to the people who need it most.
But regardless of the health problem, whether it is lack of health care or chronic illness, crippling injury or the
complexities of aging, potentially every patient benefits from patient-centered care, because it tries to maximize the
patient's ability to function.
The Picker/Commonwealth Program of Boston defines patient-centered care as "educating patients and their families
about the management of their illness and the course of treatment; attending to patients' physical needs and alleviating
pain; providing emotional supporC encouraging the involvement of patients and families in care; planning and managing
post-hospital care; and providing financial counseling and assistance."
As you can see, patient-centered care is much more than high-tech medicine. By dealing with the patient's perspective
and value system, it helps the patient live as independent a lifestyle as possible. And that also benefits the patient's family
and the community.
Although patient-centered care is encouraged throughout Parkland's medical services, the method is intrinsic to certain
specialty areas, such as Parkland's Epilepsy Treatment Center and Geriatric Assessment Team.
The entire goal of epilepsy treatment is to help patients live as independently and seizure-free as possible. The Epilepsy
Treatment Center is a regional referral center for the Southwest. Dr. Robert LeRoy heads the medical team comprised of
University of Texas Southwestern Medical School physicians, epilepsy nurse specialists and social workers. The team also
visits local clinics in poor neighborhoods where it sees about 80 epileptic patients a month. Such patients would
otherwise go untreated,
The Geriatric Assessment Team attempts to derail the nursing home shuttle through case management that addresses the
varying medical, functional and social problems of elderly patients. The team of physicians, nurses, social workers and
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474
diethiansworks closelywith communityagencies, such asAccess Center for the Elderly, to help the patients remain
living athome.
Parkland's brand new Diabetes Unit is similarly high touch. It teaches patients how to manage their lifestyles, a recog.
nition that educating patients about their disease is the best wayto prevent the risks of diabetes. Dr. Philip Raskin, the
unit's medical director, predicts that teaching diabetic patients how to care for their feet will save many from the com-
plications that lead to foot.amputation surgery.
Even Parkland's very high.tech areas have the long.range goal of finding ways to protect quality of life - another way of
saying independence. One such area is the Cerebral Vascular Disease Research Unit, which opened in early Fiscal Year
1989. It seeks to reduce physical impairment from su'okes.
Each of these programs is a small but important element of the l~ospital's overall health-care system.
The larger and better known programs include trauma and burn care. Beyond treating the patient's injuries, the scope
of care means coordinating with physical, occupational or speecF~ therapists to speed the patient's rehabilitation. It also
may involve the hospital's chaplains and social workers who help the patient and family members cope with a lifestyle that
maybe forever altered by head injury or paralysis.
Throughout Parkland's 95-year history, the hospital has traditionally served large numbers of patients. In 1989, the
emergency room and outpatient clinics handled more than a half million patient visits, while treating nearly 39,500
inpatients and delivering 14,530 babies.
In keeping with this tradition of large-scale medical service, Parklànd plans to go beyond the boundaries of the hospital's
main complex to reach into the community with a new system of health care.
The new system - Community Oriented Primary Care - is under way in two areas and will expand into a new COPC
clinic in southern Dallas next year. Following construction at Overton Road and BeckleyAvenue, the new clinic will serve
a patient population of at least 70,000 individuals.
Parkland is currently delivering health care under the COPC umbrella in East Dallas via a contractual arrangement with
the East Dallas Health Coalition. In addition, three Children & Yt~uth clinics in West Dallas have been incorporated into
COPC. These West Dallas clinics arc already serving children and ~sill expand services to adults next year. The contractual
concept allows Parkland to enhance existing clinic services at minimal cost. COPC is a concept that seeks to reduce the
high rates of illness and death in certain neighborhoods by locating or expanding clinic services in those areas. The
intent is to make the individuals and the communities in which th~y live healthier and more independent.
The dinics provide a combination of health-care programs, including health education and primary, preventive and
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27-986 0 - 90 - 16
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public health services. When necessary, patients will be referred to Parkiand for more intensive treatment, and the
COPC physicians will work with the hospital's staff to assure continuity of care.
The program will target neighborhoods where health care is considered a luxury that most residents cannot afford.
These are the individuals whose illness intensifies until, suddenly, the problem becomes a medical crisis that must be
resolved in Parkland's emergencyroom.
Perhaps it is a case of untreated hypertension thatworsened until the patient suffered a permanently debilitating stroke.
Or the patient is a 15-year-old girl who overlooked prenatal care and~is about to give birth to an infantwho is hardly
more than a fetus.
Some of these residents forego health care because of transportationbarriers or the waiting lines that can consume a half
day or more at the hospital's main complex of 144 outpatient clinics.lBy taking health care to the neighborhoods, COPC will
reduce these barriers while decentralizing Parkland's outpatient clinics.
The plan is expected to eliminate the health-care voids that breed illOess and despair, which in turn ensure that the
impoverished emain thatway.
Anything that blocks access to medical care has the potential of creating a gaping health-care void. The effects can be
measured in the debilitation and death occurring from untreated diseases. Statistics reveal shocking infant mortality rates in
some neighborhoods that equal those of Third-World countries.
The impact is immeasurable when you try to calculate the economic cost of generations of individuals blocked by poverty
and illness from ever becoming assets to themselves or their community. The long-term impact affects businesses in need of a
strong pool of employees.
Traditional health care programs show that the rates of infant mortality, teen pregnancies and sickness can be reduced if pre-
ventive health care is available. A comprehensive program of patient-cantered care, which iswhat COPC is, will make an even
greater difference. The improved health status of individual residentss~-ill promote their independence from public services.
COPCwill enable Parkland to improve the health care of individuals and, indeed, the community. Lack of health care to
those in need isjust one of the problems currently facing the Dallas area. Health care as well as education, economic/
employment opportunities and fair housing are problems this comme~nity must address in a coordinated way. By increasing
the human produetivity and potential of the underprivileged, the vitality of the entire community will be enhanced,
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479
A'losR4(;s: EROS! TIlE CissiR.sI4v 5
A majortaskfacingParkland's Board of Managers has been to develop a strategic plan that, within the bounds oflzmstedfinanczal
resources, will enable the hospital to meet future challenges. SolaR we have adopted long-range plans infour health-care areas:
* Pas*laneCs geriatric secaice is beingexpanded to meet the problents accompanyingthe "graying of America. "People are lwsnglongec We
must be prepared to carefor the very d~fferent needs of thefrail elderly.
* Tiauma cars' is one ofParklands hallmarks, and its LevelI Traunsa Centers recognized around the world, but the demands on ensesgency
-. -: -" T :--: services have strained current facilities, equipnsent and staff which must be expanded accordingly.
* Community Oriented Primary Care (COPC) is aprogram of clinics bong launched to reduce
public health problems. The program is already underway through contractual agreements, and a
- . macclinic will open in southern Dallas in early 1991.
.~ . * Parhland~AH)S Program is continuzngto evolve to address the health-care problems arising
fiom the epidemic.
-- Investment in each of these programs will pay dividends to taxpayers, the hespital's shareholders.
l'he/nogroms ars'patis'nt centered and promote the patients' independence by returningthem to maximum health and preventing recurring
illness. The results pay human and economic benefits to everyone.
COPC illustrates this best through its goat to improve the general health of neighborhoods by reducing high rates of illness and death. Monitor-
ing results is a key element in reaching our goaL
The new ZaleLipshy University Hospital also exemptifies the importance of long-term goals and continued cooperation with The University
of Texas Southwestern Medical Schootto draw more referral patients tethe campus.
The new non-profit hospitat will augment Parkiand's ability to accept paying patients. The additionalfacitity will increase the campus'
patient mix, while also enhancingthe school's ability to recruit and retain the natien~s best faculty physicians - also benefitingPai*tand. -
Parkiand's Board will continue its legacy of pro-active planning which does not alluw today's constraints to cloud ourultimate goat of giving
the best quality health casg within available resources, to anyDaltas County resident, regardless of ability topay.
The continued dedication of our employees, the cooperation of our campus partners and the support of the Dallas County Commissioners Court
will help us attain that goaL Patients, taxpayers and the community deserve no less.
RubenE. Esquivel
Chairman, hoard of Managers
Dallas County Hospital District
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MESSAGE FROM THE CIJIEFEXECUTIVE OFFICER 6
Forthe most part, the deliveiy of health care in this country is designed largely forthe convenience of doctors, nurses and hospital
administrators. Re.search, high-tech equipment, ultra-modernfadlities, accountability to Medicare regulators; everything but I/se patient
gets top priority.
But not atParkland. Although we emphasize the importance of the late.st advances in medicine to improve patient care, we do so sulk an inter-
action oriented toward the patient's value system. . -
Dovie Jones, the 85 9ear-old patient featured in the annual report's special section, is one benefi.
dory of this kind of caer The goal of treatment is to increase her years of functional independence. .
Careforthe elderly requires a shift in traditional thinking; which perpetuates dependency and
sometimises imposes enormously intrusive medical intervention on patients who don't want it.
Parkland is demonstrating amongthe elderly, the indigent sick and otherpatient groups that pro- ` . -
ventive health care results in long-term savings. The patients aren't hospitalized as often and follow- - -. `~ -
up care is less intensive. The productive years of many are sncreaseeL
Pai*land has teen more non-traditional than most public hospitals in loohingfor better ways to deliver patient-centered care. Through our
affiliation with The University of Texas Southwestern Medical Schoo4 we have enlarged the scope of our community serince, research and
teaching capabilities.
The Texas Foundationfor Health Sciences has made possible public/private partnerships that fund innovative programs and patient services
that Par/stand othenvise could not provide. The foundation, which was created to benefit Par/sland patients, raised more than $2 million in
philanthropic donatioivs in 1989.
Fiscal Year 1989 was ayearofreflection, belt tightening and strategic planning. Pai*land employees had their wagesfrszen but their dedica-
tion to the hospital's mission remained steadfast. Long-range plans were developed to improve patient care. The planning studied the mistakes
of the past to increase the gains of the future.
As always,future programs must be balanced between patient needs and fiscal responsibility to taxpayers.
Andforthe post decade, Par/stand hasbeen apacesetter We have achieved national excellence usa hospital, but we don't have time to congrat-
ulate ourselves. We have to keep going even though the economy is lagoing. We need to lead Par/stand into afuture that we help create, not one
to which we simply reacE
RonJ, Anderson, Mi).
President and Chief Executive Officer
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MFSSAGE FROM BsvcxT &F)NANcE
The conflict between economic constraints and increased patient needs mashed 1989 as ayear of budget pruning and innovative new
funding sources.
Although taxpayers paid highertaxes to ensure theDallas County Hospital District could catty out its health-care mission, the $215 million
budget had to be stretched to balance revenue and expenses. Cutbacks resulted in a reductwn inforce and a hiringfresse.
New income-producing sources helped boost revenues soParkland could meet its dual mandate-
a balanced budget and resposisive, quality patient-centered care.
One non-recurringsource of revenue was a one-time payment of $8.6 mzllzonflvm Medicate.
Pas*land received the payment in August after successfully appealinga reimbursement dispute.
The proceeezs are the result of~zn errorthat Medicare made in 1982 when it overhauled its hospital
reimbursement formula.
iou Forthe sixth consecutive yeas; collections from patient billings increased. An increase of 10
Action was also taken to limit the economic drain ofprovidingfree medical care to out-of-county patients. Afield investigatoru now asszg7ied
to implesnent procedures so these patients ortheir counties of residence will reimburse Pas*land.
The newest and continuing revenue sourc.e is the new on-site McDonaleCs restaurant that opened inAugust. It is expected to increase
Pai*land~ revenue by at least $300,000 each yeac
Whiksuch measures accounted for the year-end balance of $10 million ineiecess revenue over expenses, the innovative approaches show that
Pa,*land iv willingto pursue a course that does not rely solely on tax support.
By tsyingto reduce dependence on local tax dollars, the hospital is ensusinkthat taxpayers are, indeed, gettingtheir money's north. Weplan to
continue this trend into the 1990s, with our goal to continue to oberate the hosisitalefitcienllt while maint tainxqualit', patient caor
W LamarLoirvorn
Chairman, Budget &`Financ Committee
MacGregor WDay
Executive Vice Presidenl and Chief Operating Qfficer
484
;iiJbll ~
percent this yeas; brought total collections to $91.7 million.
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/ C
) I
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488
MESSAGE ABOLTT PROGRESS ON BUILDING ASS?) FACILITIES 8
Thisfiscal year concludes a decade of construction that has completely alt~red the look of Parkland to enable the hospital to do a hater job of
delivering health care.
Since 1979, the hospital has committed more than $200 million to buildir g remodeling and new equipment. Fundingforthese projects was
split, with approximately $105 millionfinanced through the sale of bonds white the remainder was internallyflnanced.
Internatfinancinghas saved tax dollars on interest expense and additional long-term debt obligations. Alt/sough we have conduded the lastfe'w
renovation and expansion projects remainingfsvm the 1980 land program, construction on and neartheParidand campus i.sfarfrom finished.
Construction of the newAlgurH. Meadows Diagnosticlmaging Centers scheduled to begin in early 1990. Thefacility will housefourpower.
ful magneto. The magnets will operate Magnetic Resonance Imagingequipment - diagnostic tools that enable physicians to look deep into a
patient's body to detect problems. No invasive surgery is involved and, unl~he CT scans, MRJs do not use radiation.
The most exciting project will he construction of the Communiçy Oriented Psimary Care clinic in southern Dallas. Actual construction of the
clinic, which will help decentralize Parhland's outpatient clinics, is scheduled to begin before the Spring of 1990 and is expected to take one year
to complete. The cost for building and equipjsingthefacilojy will he approximately $4.5 million.
Existing construction projects covera broad scope and include theflcst phase of the much-needed expansion of the Labor and Delivery area.
Wos* on the project was to hefinished by February and is part of a $14 million project to upgrade maternal/child health services.
Remodeling of the emergency room will be afour-phase process and is expected to take three yearx
Construction of the garage and new laundryfacilities on Medical CenterDsive will he completed by July. Construction projects throughout the
year have brought into service a new diabetes unit, a computer classroomfczrphysician research, new radiology offices and hallway links that
connect Parkland to the new clinical sciences building and the new ZaleLipshy University Hospital.
These and other construction projects are important parts of the overall plan to maintain Parkland's ability to continue to meet the needs of the
community in a cost-effective manner
WE. "Bill"Cooper
Chairman, Building Committee
Wiltiami. eMuthJc
Senior Vice President
Facilities and Design
PAGENO="0493"
489
PHIL4WJHROPY
Approaching its second century of patient care, Parkland Memorial Hospital continues to contribute to the vitality of the
community, the region and beyond.
Parkland is a significant presence in the community and stands for much more than providing medical care to the poor.
As the primary teaching hospital of The University of Texas Southwestern Medical School, Parkland provides far-
reaching benefits that include helping to create the technology of tomorrow. Through
the strong affiliation between Parkland and the medical school, Dallas benefits from
our extensive community service in patient care, education and research.
Philanthropy makes Parkland an exciting place. Charitable gifts make possible many
centers of medical excellence, such as the epilepsy, pediatric trauma, trauma, burn
and North Texas Poison centers.
Through charitable gifts,Parldand can address Dallas'health-care needs far beyond
the funds available from local, state and federal sources~The gifts that pay for many important projects come in all sizes
from approximately 1,800 donors whose reasons for giving are as varied as the donors themselves. Parkland's donor
family includes local philanthropists Annette and Harold Simmons, who know the importance of planning for the future
while meeting the needs of today. Their gift of equipment will provide important patient care, lower cost per service and
the most advanced training available to doctors and other health-care professionals.
Theihospital's donorfamily also incitides firefighter associations throughout Dallas Countywho support the Parkland
Burn Center. Firefighters suchas David Ford and David Lee represent the Carrollton Fire Department which is
committed to keepingParkland's Burn Center the best available.
Parkland's charitable support organization, the Texas Foundation for Health Sciences, accepts all gifts on behalf of the
hospital and assures that they are used for the donors' stated purpose.
Giftsthat support Parkland come in many forms. While cash is the most common gift, some donors prefer to give stocks,
real estate or other appreciated property.
With your help, Parkland will continue to contribute to the advances in patient care, medicine and the overall health of
the community it serves.
07 nn~ rs (~,-, -,
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491
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[:1
]
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IDEASFOR PHILANTHROPIC GIVING 10
Anybody can engage in charitable giving, and there are many ways to do it Donors should give special consideration to
the individual features and income-lax benefits of each of the following and other methods:
* One-time cash payments.
* Pledges, payable through multiple installments.
* Matching gifts.
* Life insurance.
* Personal property, such as art or equipment
* Appreciated property, such as real estate, stocks or other securities.
Charitable trusts.
Naturally, cash and other immediately negotiable gifts will permit rapid follow-
through on designated projects, but planned giving may better meet a donor's
personal needs and wishes in implementing a project A planned gift may be as
simple as a bequest made in yourwill or you may use a charitable trust to maximize the estate and subsequent gift.
Family members, individuals or service organizations may want to commemorate a loved one or respected associate
through special memorial gifts.
* All donors are listed in Parkland's annual report, although your name will be omitted if you wish to remain anonymous.
These and other gifts to Parkland are managed by the Texas Foundation for Health Sciences. The foundation's staff
assists donors in directing their tax.deductible gifts to designated Parkland programs or byapplying them where the need
is greatest.
For more information on charitable giving and estate planning, please contact the Office of Development & Grants
Management, Parkland Memorial Hospital, 5201 Harry Hines Blvd., Dallas, TX, 75235 or call: (214) 590-8090.
D~MF'd&D,~idL~
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"By increasing the patients `functional capacity,
we can maximize their independence for as long
as possible. It is more important to add l~fe to
years than just add years to life."
Ronj Anderson, M.D.
Chief Executive Office~ç
Parkiand Memorial Hospital
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CONTENTS OF FINANCIAL SECTION
Paridand Memorial Hospital
Dallas Gounty. HospitalDistrict
1989 Annual Report
11
Financial Report
19
Parkland At A Glance
20
Statistical Review
21
Management And Medical Staff
22
Contributors
PAGENO="0500"
The accompanying notes are an integral
partofthc combined financial statements.
50
_.2~072_ $1805
$_._~~i~_ $__b$«=!~
496
* DAUAS Couirrry HOSPITAL DIsTRIcT
COMBINED BAI.ANCE SHEETS
September 30, 1989 and 1988
(Amounts in Thousands)
Axsers
GESrE SAL 25/ND:
Cuovcwi-Asscs-s:
11
1989 1988
$51,327 $47,252
3,556 2,256
2,539 2,627
Assets ltmited as to use
Ad valorem taxes receivable, leo allowance for uncollectible
taxes of $6,561 in 1989 and $6,032 in 1988
Patient accounts receivable, less
allowance for uncollectible accounts
of $87,422 in 1989 and $71,252 in 1988
Due from third-party reimbursement programs
Due from restricted funds
Supplies (at cost) and othercurrent assets
Total current assets
ASSETS LJMTJEB AS TO USE
Rcs'rRzc-IEDFuIEDs:
Cash
a
Due from general fund
LIABILITIES APDFSS',D BALANCES
GcvvcsLnv,v:
CURRENT UABILTTIES:
Accounts payable
Accrued payrolland benefits
Due to restricted fund
Accrued interest
Current maturities of long-term debt
Due to third-party reimbursement programs -
Total current liabilities.
LONG-CERM DEBT
OTHER LONG-BERM LIABILITIES
22,340
50
-~j-
85,793
145,209
2,122
B 9,901
9,658
1,614
5,465
719
27,357
86,860
3,444
18,958
1,535
78,127
139,767
-~-
$li~.$S$
$ 1,583
222
$ 9,221
8,525
222
1,684
5,225
24,877
92,325
2,732
Coscstrrsicwis.sr,p CONTINGENCIES
RFSTRICBEOFITP,DS:
i~S2
~ $*~4*~$5~.
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497
COMBINED ~TATEME5TIS OF REVENUES AND EXPENSES
for the years ended September 30, 1989 and 1988
(Amounts in Thousands)
Revenue deductions, including charity,
contractual allowances and provisions
for uncollectible accounts
Advalorem tax support revenues
Other operating revenues
Total operatingrevenues
Operating expenses:
Salaries,wagrs, and benefits
Supplies and otherexpenses
Depreciation..
Interestexpense
Total operating expenses.
Loss from operations
Nonoperating revenues.
Excess of revenues over expenses before
retrospective Medicare adjustments
Retrospective Medicare adjustments
12
1989 1988
$333,606 $289,800
2~$~$~$
92,605 83,527
117,678 111,124
l.9L$~P~
115,520 104,272
82,493 75,189
13,246 13,674
(3,798) (1,425)
3,997 4,261
$J$~3 $4~6l
1989 1988
$125,025 $120,762
10,053 4,261
304 2
$j3y,79~ $125,035_S
.$ 1,805 $ 786
2,943 2,782
$_~7~_ $__L$$$_.
COMBINED STATEMENTS OF CUANCES INFUZsD BALANCES
for the years ended September 30, 1989 and 1988
(Amounts in Thousands)
GuwusAu Fuss
RESTPJCTEDFSJNDS
The accompanying notes are an integral
part of the combined financial statements.
PAGENO="0502"
Loss (gain
Decrease
) on disposal of assets
(increase) in ad calorem ~esrecei~bI~~
Increase
npatient accounts receivable
Decrease i
n due from third-party reimbursement programs
Increase in
Increase in
supplies and othercurren t assets
due from restricted fond
Increase in
accounts payable and accrued espenses
Increase in
other long-term liabilities.
perty,plantanorquipment
13,246 13,674
(157) 345
88 (512)
(3,382) (3,536)
2,254 792
(482) (980)
(50)
1,521 3,291
712 578
(18,227) (17,873)
5,746 9,522
_~)
.U~)
_(4~
4,075 9,351
Cash flutes from financing acticities:
Repayment of long-term debt
Net cash used by financing actis-iti
Increase in cash and cash equivalents..
Cash and cash equivalents at beginnin1
Cash and cash equtvatentsatend of year.,
The accompanying notes are an integral
part of the combined financial statements.
Noms To COMB!NF,D FINANcIAl. STATEMENTS
1. SICNeF!cs,'iTAcCouvrrJ.vx Pouc.os:
Ooas.vlz,sTJav
The Dallas County Hospital Disteict ("Dtstrict"(, a political subdicition of the State of Teoas, is comprised of Parkland Memorial Hospital
("Hospital") and the Texas Fouodatton for Health Sciences. The District is roempi from federal income taxes under Section 50l(c)(3) of the
Internal Revenue Code. The Hospital operates approximately 855 beds and 164 bassinets and operates an outpatient clinic and emergency
room. Addttionally, the Hospital serces as the major teaching hospital forThe University of Tesas Southwestern Medical School which is
located adjacent to the Hospttal. The Hospital has a contract with The University of Tesas Southwestern Medical School ("UTSMS"( to
pros-ide professional services and medical supervision ofpatient care at the Hospital.
Addtoonally, the Hospital has a contract with Children's Medical Center("Childrrn's") forcertain patient and nonpatient services
FUND ACCOUNTING
The resources of the District ace clastifird as either general or restricted funds. General funds include resources that the Board of Managers
may use for anydesignatrd purpose. Rettricsed funds include ret oarces restricted by donors foe specific purposes.
RECJ.ASS1FIC4TIONS
Certain amounts reported in the 1988 financial statements have been reclassified to conform with 1989 classifications. These reclassifications
had no effect on racess of revenues ut-er rxpensesor fund balances as prrs-iously reported.
CASuJAMi C4SHEQUIVALEVJS
Cash and cash equivalents include demand deposits and short-term certihhcatns of deposit.
As VAL0REM TAXi-.S
The District received approximately 55% in 1989 and 56% in 1988 of its fitiancial support from ad valorem taxes. Thrsr funds were used
as follows:
1989 1988
Percentage used in support operatiuns. 50% 53%
Percentage used for debt serwce on general ubligatiun bonds 5 3
498
STATEMENTS OF GASH FLO wo - GENERALFLIND
for the years ended September 30, 1989 and 1989
(Amounts in Thousands)
Cash flows from operating and n000perating activities:
Escess if revenues over exprnses
Adjustments to reconcile escess of revenue ovrrrxprnses to
net cash provided by operating aod it000perating activities:
13
$18,053 $4,261
Net cash provided by operatitsg and
Cash flows from investing activities:
Purchases of pro
Assets limited as to use:
Use of construction program funds to acquire
property, plant and equipment
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NOTES To COMBINED FINANCIAL STATEMENTS 14
1. SINVTICANTACCOUNTINGP0UENS, continued:
Ac VALORCII TAED, continued
Current taxes are received be~nning in October of each year and become delinquent afterJanuary 31.
PR0PERm; PIANT~DEQtIIPMFAT
Property, plant and equipment are recorded at cost, or if donated, fair mueketvalue at the date of receipt. Costs of majorrenewals and better-
ments which extend useful lives are capitalized while maintenance and repairs are charged to current opeeations. Disposals are remnved at
carrying costless accumulated depreciation with any resulting gain orloss included in n000perattng revenues. Depreciation is recorded nn
the steaight4ine method over the estimated useful lives of the assets. Estimated useful lives for buildings are 101040 years and Ito 20 yearsfbB~
equipment.
INTERLST CERffAIJERTION
In accordance with Statement ofFinancialAccountingSlandalds ("SFAS") No.62, the District capitalizes interestcost of resteictice tax-exempt~
borrowings net of anyinteresi earned on temporary investments of the proceeds for construction projectsfunded by tax.exemptborrcswings.
Interest expense is also capitalized in accordance with SPAS No.24 for projects flnancedwtth operating fundu.
Capitalized debt issue costs relating to tong-term debt are amortized over the period the debt is outstanding using the steaight.line method.
Rcarojcmo Fusos
Upon receipt, contributions, grants and other revenue restricted by donors for specific purposes are recorded to the appropriate restricted
fund Each restricted fund has an administrator responsible for monitoring the income and expenses, and for determining that the fund's
assets are being used for the stated purpose. The Texas Foundation for Health Sciences, a nonprofit corporation established in 1986, is
combined as part of the restricted fund.
THIP,D.p.sRTrRcLstnuRsEME'aPROGR.'!'5s
The District has agreementswith third.pariy payors that provide for reimbursement to the District at amounts differentfrom its established
rates Contractualadjustments under third-partyreimbursement prograssss represent the difference between the District's established rates for
services and the amounts reimbursed by third-party payors. The District's more significant third.party puyors are the Medicare and Medicaid
programswhich accounted for 16% and 10%, respectively, of gao ss reve noes in 1989.
In accordance with provisions of the Medicare and Medicaid programs, inpatient services to Medicare and Medicaid beneficiaries are paid at
prospectively determined rates per discharge based on a patient classification system utilizing clinical, diagnostic and other factors. Outpatient
services are generally reimbursed on a cost reimbursement methodology. Additionally, the District receives rostbased reimbursementfrom
Medicare for certain costs, as defined by the Medicare program, including capital, medical education and bad debts.
Cost reimbursable items are reimbursed to the Districtat a tentative rate with final settlement determined after submission of annual cost
reports by the District, which are subject to auditby the intermediaryprior to final settlement. Anydifferences between final audited
settlements and amounts accrued at the end of the prior reporting period are included currently in the statement of revenues and expenses as
an adjustment to the appropriate allowance account.
2. CaSH AND C4SHEQUNAUNTS:
The District's deposits at year endwere entirelycovered byfederal depository insurance or by collateral held by the Federal Reserve Bankof
Dallas under the terms of a depository agreementwith NCNB Texas National, NA. State law determines the types of collateealwhich canbe
held under the terms of the depository agreement. The total carryingsalur of depotiu held under the depository agreementat
September 30, l989was $79,046,000. Markeivalue of securities held as collateral at September 30, l989soas $93,862,000.
3. AssErt lAMMED AS TO (Jar:
Under Bond Indenture
Assets limited as to use under bend indenture represent those assets (cash and certificates of deposit) which are encuntbered bycovenanss in
the revenue and general obligation bend indentures.
The use of these funds is restricted to the payment of obligations arising from the bend iuuen, including costs of construction.
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Noms To COMBINED FINANCIAL STATEMENTS 15
3. ASSETS L!MTIT.D AS CI Usc, continued:
OTHER
Otherassets limited as to use include funds designated to fund the Dist~-ict's self-insurance program.
1989 1988
s.onstruction program funds $ 14,615 $ 28,361
6,463 5,154
-~-
aotal assets limited as to use 25,597 29,321
Less assets limited as to useand reouired for current debt service.. y,tyj
Assets limited as to use, netofcurrent portion.. S223%)~ $~gs
Land and improvements
Buildings
Fined equipment.
Major mumble equspmenc
Accumulated depreciation..
Property, plant and equipment, net 15sf-zoo
Estimated remaining expenditures related to the 1986 construction prograns approximated $7,000,000 at September 30, 1989.
Net interest cOtt capitalized on constesscsion projects totaled $125,880 in 1989 and $713,000 in 1988. These net amounts have been reduced
for interest income earned on construction program funds acquiredwiththe proceeds of sax'exemptberrowings of $l 063 000 in 1989 and
$1,807,000 in 1988.
5. L0NG-TriisrDroi:
Lang-term debt outstanding at September 30, 1889 and 1888 is summarized as follows (in thousands):
1989 1988
Revenue Bonds:
Series 1970, with interest from 6.0% 107.1% payable semiannually,
principal payable annually to 1980
Series 1979, with interest from 6.75% to 7.0% payable semiannually
from 1991 to 1993
Series 1986, with interest from 6.8% to 9.75% payable semiannually,
principal payable annuallyfrom 1989 to 2000
General Obligation Bonds:
Series 1985, with interest from 5.75% 109.0% payable semiannually,
principal payable anoually through 2002, debt service is payable
$ 5,465
5,835
6,250
6,705
7,200
-
500
Under bend indenture:
4. P5orcoi'~ Pz~wrAPvEquzrstcs'r:
Property, plantand equipment at September 39,1989 and 1988, are sun
marized as follows (in thousands):
1989
$ 7,696
160,991
6,099
227,677
132,871
-i~-
1988
$ 7,654
157,673
6,098
221,014
138,101
57
.8 600 $ 1,200
2,025 2,025
25,170 25,395
Gross patient revenue is pledged as collateral on all revenue bend series di
Lang-term debt maturities subsequent to September 30, 1989 areas follow,
1990
92,325
$~.~%557.
(in thousands):
97,550
There,ifter
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501
Noms To COMBINED FINANCIAL STATEMENTS 16
5. LONG-TERM DEBT, continued:
Certain proceeds of the General Obligation Bonds Ses-ies 1985 were deposited with a trustee in sufficient amounts tn extinguish all the
defeated General Obligation Bonds (Series 1981, 1982, 1982A and 1984) when due or callable. At September 30, 1989, there were
$63,315,000 of these defeated bonds remaining outstanding.
Total interest cost incurredwas $7,509,000 in 1989 and $7,850,000 in 1988. Total interestcost paid was $7,578,000 in 1989 and
$7,898,000 in 1988.
.6. RETEBERsENTPL5N5:
Defined Benefit Plan
The Districtrnaintains a single-employer, defined benefit pension plan (the "Plan") which covers substantially all of its full.time employees.
The payroll for employees covered by the Plan for the year ended September 30, 1989 was $71,726,000; the District's total payrollwas
$105,647,000. Membership in the Plan atofJanuary 1, 1989 was comprised of the following:
Retirees and beneficiaries currentlyreceivtng benefits 121
Vested terminated employees 250
Active employees:
Pullyvested 1,233
Nonvested 1,982
Employees attaining the age of65who have completed five or more years of service are entitled to annual benefits of 1.25% of their final
average annual earnings for each yearofservice prior to 1982 plus 2.5% oftheirfinal average earningsforeach yearofservsce after 1981 upto
a maximum of 60% of final average earnings. The Plan permits early retirement, forwhich the participant is eligible for a reduced benefit, at
age 55 provided the employee has completed five years of service.
If an employee-terminates his or her employsssentwith the District prior to the completion of five years of service, the employee is enutled to a
refund of his or her contribution plus 5% interest compounded annually. After five yearsofservsce, the employee, upon termina000, is
entitled to the pension accrued to the date of termination, payable commencing at his or her normal retsrement date or, at the age of 55 upon
early retirement.
Employees are required to contribute 4.5% of their annual salary to the Plan. The District is required by the Plan to contribute the remaining
amounts neceuary to fund the Plan using actuarial methods.
The amount shown below as the "pension benefitobligation" is a standardized disclosure measure of the presentvalue of pension benefits,
adjusted for the effects of projected salary increases, estimated lobe payable in the future as a result of employee service to date. This measure
is the actuarial presentvalue of credited projected benefits and is intended to (i) help usernassess the Plan's funding status on a going-concern
basis, (ii) asseu progreu being made in accumulating sufficient assets to pay benefitswhen due and (iii) allowfor comparisons among public
employee retirementplans.
The pension benefit obligation was determined as pars of an actuarial valuation of the Plan as ofJanuary 1, 1989. Significant actuarial
assumptions used in determining the pension benefit obligation include (a).a rate of return onthe invesiment ofpresentand future assets of
7.5% peryear compounded annually, (b) projected salary increases of 6.5% peryrar compounded annually.und (c) the amumption that
benefitsssill not increase afterretirement.
J~989~
- $3,599
Terminated employees not yeireceivsng oeneiiss.. 2,447
Current employees:
Accumulated employee contnbusons including allocated investment income 10,885
Employer financed, vested 9,044
Employer financed, nonvested
27,581
Netassets available forbenefits, atmarketvalue..
Net assets at marketvalue in exceu of total pension benefitobligation .
Changes in the pension benefit obligation from the prioryear,January 1, 1988 to theJanuary 1, 1989 obligaoon presented resulted from
the inclusion in the 1989 obligation calculation of certain retired participants receivingbenefits which were excluded from the calculation
of the 1988 obligation. None of the changes in the pension benefit obligation during plan year endedJanuary 1, 1989 was attributable to
plan amendments.
PAGENO="0506"
502
No~ss To COM VfCTAL STA7EMFJVTS 17
6. RErmEJscvrPIAias continued:
Defined BenefltPlan, continued:
The District's funding policyis to provide forpersodic employercontributions atactuariallydetermined amounts designed to accumulate
sufficient assets to paybenefltswhen due. The contributions are determined using the projected unit credit actuarial cost method and are
equal to the normal cost plus an amount required to amortize the unfunded actuarial accrued liability, if any, as of the valuation date over
aperiod of 20 years.
During the year ended September30, 1989, $3,228,000 of employee contributions (4.5% of covered payroll) were madein accordance
with the established contribution requirements described above. The actuarial valuation of the Plan as ofJanuary 1, 1989 recommended
that no employercontributionswere necessaryfor the year ended September 30, 1989. Accordingly, no employer contributions
were made. There were no changes in actuarial assumptions for thevaluation onjanuary 1, 1989. SignifIcant actuarial assumptions
used to compute contribution reqoirementswere the same as those used to compute the pension benefit obligation.
Three-year historical trend information presenting the progress in accumulating sufficient assets to pay benefits when due is presented in
Appendix I of this report.
Defined Contribution Plans
The District also maintains avoluntarydefined contribution plan coveringall employeeswith atleast one year of service. Eligible employees
can choose to contribute from 2% to 6% of their base salary. The Districtwlll match employees' contributions 100%. Employees are fully
vested atall times in theirvoluntarycontributions plus earnings thereon. Vestingin the District's matching contributions is based on years of
service. After oneyear of service, employeesvest at the rote of 20% peryearforfive years. Should an employee terminate prior so vesting
completelyin the District's contribuoons, the unvested pardon can be used to reduce matching contributions in the aggregate in the following
year. Contributions for the yearended September 30, 1989 were $1,402,000 from the District and $1,995,000 from employees or 1.3% and
1.9%, respectively, of total payroll. The required contribution by the Districtfor 1989 has been reduced by$593,000 representing forfeitures of
prior District contributions and related investment income for nonvested employees withdrawingfrom the Plan upon termination.
7. CosssarrMvwms.tvts COWTINGE.vctEs:
The District is self-insured up to certain deductible limits for the purpose of providing profeuional and patient care liability claims.
Professional insuronce consultants have been retained to determine funding requirements. The amounts funded have been placed in a self-
insurance trust account that is being administered bya trustee. The self.insurancetrust account is reported in assets lisnited as to use in the
balance sheets. AtSeptember 30, 1989, the presentvalue of all incurred losses based upon independent actuarial calculations is recorded as a
long-term liabihtynfthe District. These tours are discounted at a 6% annual rote.
The District is involved in certain legal actions and claims arising in the ordinarycourse of its operations. Claims alleging malpractice have
been asserted against the District and are currentiy in various stages of litigation. Additional claims maybe asserted against the District arising
from services provided through September 30, 1989. It is the opinion of management, based on consultation with legal counsel, that estimated
malpracoce costs accrued at September 30, 1989 are adequate to provide for potential losses resulting from pending or threatened litigation
8. Rvmosvcmw!EoicutcAojusr,urn-v:
Daring 1989, the District received a favorable settiement in its appeal to the Medicare program for the correction of errors in the calculation
of the base year rate upon which Medicare reimbut-sementwas based from 1985 to 1988. This favorable setdementresulted in the District's
collection of $8,582,000 during the currentyear related to shortfalls in prioryears' Medicare reimbursement. Again of $8,382,000 from
retrospective Medicare adjustments has be en recorded in 1989.
The District recognued alou of $2,326,990 in 1989 related to changes in Medicare regulations concerning payment for Direct Graduate
Medical Education costs (~DME"). These regulations have changed DME reimbursement from a reasonable cost basis to a prospective
payment methodology and have been applied retroactively to cost reporting periods afterJuly 1, 1985.
PAGENO="0507"
503
APPENDIx J 18
THREE YEAR HISTORICAL TREND BEGINNING January 1, 1987
(As Required by GASB #5)
Unfunded
Benefit
Unfunded Obligation As
NetAssets Pension Pension Annual Percentage
Fiscal Available Benefit Percentage Benefit Covered of Covered
Year for Benefits Obligation funded Obligation Payroll Payroll
1987 $21,916,078 $12,887,504 170.1% ($9,028,774) $64,709,097 (14.0%)
1988 . 27,446,541 20,567,596 132.4 (6,878,945) 74,101,506 (9.5)
1989 31,762,280 27,581,408 115.2 (4,180,872) 70,015,180 (6.0)
REPORT OF INDEPENDENTACCOURII'ANTS
Board of Managers
Dallas County Hospital Dislrict
We have audited the accompanying combined balance shed of Dallas County Hospital Dislrict coo of September30, 1989, and the related combined
slalements of revenues and expenseL changes infund balances and cushJtows of the generalfund for the year then ended. Theseflnancial statements
are the responsibility oft/ce managment of Dallas County HospitalDistrict. Our responsibility is to express an opinion on theseftnancial statements
based on our audit. Thefinancial statements of Dallas County HospitalDistrict for the year ended September30, 1988 were audited by other auditors,
whose report, dated November29, 1988, expressed an unqualified opinion on those statements.
We conducted our audit in accordance with generally accepted auditing standards. Those standards require that we plan and perform the andit to
obtain reasonable assurance about whether thefinanciat statements arefree of material misstatement. An audit includes examining on a test basis,
evidence supportingthe amounts and disclosures in thefinanciat statements. An audit also includes o.ssessingthe accounting principle.s used and
signepcant estimates made by management, as well as evaluatingthe overallflnancial statenient presentation. We believe that our andit provides a
reasonable basisfor our opinion.
In our opinion, the 1989 combined financial statements referred to above present fairly, in all materiat respects, the scsmbined financiat position of
Dallas County HospitalDistrict ,s of September30, 1989, and the combined results of its operations and the cashflows of the general fund for the
yearthen ended in conformity with generally accepted accounting principles.
Coopers &Lybrand
Dallas, Texas
December15, 1989
PAGENO="0508"
504
PAR,jANDArA~IANcE 1989 19
AvIII.,oalE Bans
RoutineAdult& Pediatric. 706
Intensive Care 67
Neonatal 85
H64
PATIcWTS AoMrnre (Adult, pediatric and neonatal) 40,585
Newborn 15,536
PATiENT DAYS
Adult, pediatric and neonatal 54,007
Newborn 44,672
AvcoAocD.SILr CcNStsc
Adult, pediatric and neonatal 696
Newborn 122
Aico.sccLEr.IGTIIERSTAY
Adultand pediatric 6.3
Newborn
21.2
OPERATING ROOMS 18
DcuvcorRoo,ws 7
PERSONNF.L (Authorized positions) 4,340
EDUCATIONAL PROGP,4.MS 33
CliNICAL TDAININGFORNUR.SF.S 387
STLOENIS
Physidans 790
House Staff (iodudes Post Doctoral Fellows) 675
Ntssrtco ta OUIPATIEWT Visrrs
General Specialtyand SubspecialtyCltnics 385,595
Volunteer Blood Donors 17,709
NunsberofEmergencyRoom Visits 138,355
Average EmeygencyRoom Visits Per Day 379
PAGENO="0509"
STATISTiCAL REVIEW
SUMMARYFIVE-YFAR COMPARISON
Patients Admitted
Adult & Pediatric 39,447 37,635
Neonatal 1,138 1,182
Total 40,585 38,817
PATIF.NT DAYS:
Adult & Pediatric 229,905 226,561
Neonatal 24,102 23,628
Total 254,007 250,189
Avco.sucLctZGTHOESTAY
Adult & Pediatric 5.8 6.0
Neonatal 21.2 20.0
NUMBER CFAYAIL4BLE Bcns
Adult& Pediatric 773 778
Neonatal 85 85
J'ERCLNTIE Occul'.RScY
Adult & Pediatric 81.5 79.6
Neonatal 70.7 75.9
AVERACEDAILY CENSUS
Adult &Pediatric 630 619
Neonatal 60 65
DEuvcoos(LABOR&DELIVERY) 14,530 14,543
NoRsut NEwBoRN NUP,ScRY
Admissions 13,536 13,321
Days 44,672 44,731
Average Length of Stay (Days) 3.3 3.4
NumberofBeds 164 102
Percent Occupancy 74.6 119.8
AveeageDailyCensus 122 122
Oun'ATIcWrCUNIcS
Visits 385,595 351,578
Average DailyVisits 1,518 1,379
Children's Medical Center Visits 21,600+ 21,600+
EtUMGENO' ROOM
Visits 138,355 137,179
Average DailyVisits 379 375
Total Clinic & EmergencyVisits 545,550 510,357
ANCBLiARY ROt VIERS
AnesthesiaAdministered 18,888 16,450
Blood ProductsTransfused 53,083 39,564
Central Service Supplies Issued 4,545,163° 2,362,247
DietaryMeals Served 1,324,989 1,356,824
Pathological LabTests 5,017,730 5,023,419
OccupationalmerapyTreattnents 54,495 65,441
PharmacyPresceiptions 2,256,892 2,017,460
PhysicalTheeapyTreatments 85,766 97,674
RadiologyExaminations 320,847 286,966
RespieatorymeeapyTreatments l,554,382°° 840,143
Surgical Patients 12,748 12,209
Change from multi-issue to unit issue.
saCisange in procedures count
Certain 1986 and prioryear statisticswere restated for comparative purposes.
1989 1988 1987 1986 1985
38,615 33,168 36,227
1,050 1,067 948
39,665 34,235 37,175
228,244 225,984 226,443
23,711 23,795 23,245
251,955 249,779 249,688
5.9 6.8 6.3
22.6 22.7 24.5
740 734 749
85 85 85
84.6 85.4 82.2
76.4 76.7 74.9
625 618 621
65 65 63
14,508 14,065 12,572
13,426 13,109 11,521
42,722 42,533 39,847
3.2 3.3 3.5
102 102 102
114.8 114.3 107
117 116 109
330,120 294,184 288,254
1,299 1,158 1,134
21,600+ 21,600+ 21,600+
157,208 157,625 157,716
431 432 432
508,928 473,409 467,570
16,197 17,716 17,063
40,023 38,991 44,683
2,211,758 2,253,816 2,217,961
1,374,557 1,336,884 1,382,054
5,072,112 4,830,617 4,271,130
69,858 71,197 63,919
1,931,861 1,664,974 1,578,954
98,006 86,082 65,140
313,293 280,991 281,215
751,974 668,812 683,196
12,248 11,636 12,222
505
20
PAGENO="0510"
506
21
Bo,ajw OF MANAGERS S DL) S
Ko.thyR. Malnoy RogerN. Rosenbeog M.D. Douglas
El ClazdeMccain,fr obertBuchol MD.
Mu~.A~C~ps.nas,~ mapada COoa5 Jerry McGowan Nsada~(ThpaSas&4a) Ohap&.cSagy
au Bill Oberhola KennelhAltshule~ MD. j~p0~ M.D
Barbara Watkins C~no)
PrrIcet~ MD. William MryerhofJ MD
`~~" EatherM. Rues PycSiacy(lapaBe,Sscica)
A M n Bras, )tsaaaa John Rush, M.D. SadtManninll M.D.
gOetaoa5g momast. co;js ~~diaoy(C555 ClisicasSaa,)
Th~,L~ZAffaa ~ Tow, M.D. FiateBaHon, M.D
MargaretM. Hogan, CFRE ~
04 ~,thaa LsaubMaaoa) Dissaoow Gaat,Maaago~ (~top,~ N Lu, M.D Wllsam Snydo~ IlL M.D
Linda Rordan ozoaa,osai s.ie~a~,
~d&MtCOaa,n Lyman Bitha~ M.D. Rodn~Rohskch, M.D
WtkamE. ~ Juatin McCArthy, M.D.
sass MF,DIC4L STAFF O'FIC.E5SS ~`°~ns~'~ John IVesgell, M.D
Cs~yasdWadTcsdsCass
Cy;sasas,D/WAspaaoauldmso Rdo.llRosenblatt, M.D. PEDIATR!CS/NUR.SEPJFS Paul Peters, M.D
LM~Ca
N CartyleSmsth Gary Reed, M.D. Abbot LaptookMD.
pun d,O-EIo NalamNu,,
idsssyk4ssOsNCBTesas.CandPs~ F~ Berman, M.D. Chuck Ginsberg M.D
ass~sa,aaa~ 197E1987,paapsads5 C~alaoa Adolph Gicseche, M.D
Opadsnh ~&udan4M.D. PdacwNaao5aetaasss&na RobertMcKonna,M.D
Betsy Cullnoath ~JaneSeige4 M.D.
thssaCAa CUIETS OF SER VICE, MEDICAL a~ Geos~e Curry, M.D
pon,~psassingcaLajac DINEc7oR.s & CONSULTANTS P~I~'
tad aim Na) ToasFIstthFal,ass AMBULATORY C4RE CharleaRooenfelLM.D. FA,IILYPPACIf1CE &
L~nne Risk, M.D. ~ M.D. COMIETYMF,DICJPE
Mi,catl)mdos SpdalCosNany biEDam~, M.D
* Paul LooPorte, M.D.
7tos5~pas&adssc Pssas7Eas(Nuao PHYSICAL MEISJINE DEPARTMENTAL STEW
&Hal4~ ENIERGENCY SEn ViCES halaJfdnMlE
ona som&)sasp&Dallas spa M haelKson! M.D Thiutes Sn,a) ROaM hh g
`~`" Mahosh Shreola, M.D.
MOan, OBSTETRICS/GYNECOLOGY INTERVAL MEDICINE
Co?swlsslopggns COURT ~ary~et~nan M.D. L4BOR &DEUVERY Jean Hoffman, NH.
Douglas Puryean M.D. Gay Cunningham~ M.D. T)sic015SsoosAsahssiaats
O5ia/5saOa~(Cdaas) Liesel English
Eruan 754 M.D. Roberto Yasigi, M.D. 1)00 Tlossssicooioa
Celia Kraait
Nancy Judy DasidHemsel4 M.D. DOicSaHa,
IJOTIEO.NAL MEDICINE CysaOa~ Richard Gsvene
John ~ Kenneth Leceno, M.D. INuaaE**
CsDaso3 Daniel WFosler~ M.D. ~ Richard Massouh
aSS Seas 1 a)) a sos) Tom Lowe, M.D. i~,sa,s Isf,ao.io,Ssa4a,
Mask Kremers NsnsMid.ssfey Bruce Timlin
As*ythodMasa~sssss5
~~~IHYp5TJs/g Sm~r James Willerson, M.D SURGICAL SERVICES RandyFesge
Di,s,s~ IsOraa)A,di
~ Andonoth M.D DassdHllis, M.D. ~ M.D. LillieBi~ns, RN, M.S, CNA.
Cad,,oCth5esa,a,,sI.ab IsOaaCJaiss~a,,Sasgey DmaaslssmatMaj,anu Nan,,g
MacGregtrWDay * * GunnarBlomqvtss, M.D. DonnellJohna, Ph.D. Bobbie Redmon, NH
EsahsaVjPads,atk5O,fEFsasgoffi,s Casdas:asaOa,. SagicalAffa), Do, Is,,. &Ddassy
AlanK Rena, M.D. BdanFirth, M.D. John Hunt, M.D. CassyneAdams
M~cslTh,us,.
wm,J. De,nushft ~ M.D. W Steves RinG M.D. Paul Waggoner
WayneL ~ moo MaaOSaa,
&naeVkaPud,su Ann Taylos~ M.D. KR Cochran, M.D. ~ ~k~rdn~a, NRA
Betsy AlI,J ` * ThssoasMsl,caOB,cad,
Paulj Bo' ssbuls.an, D.RAa MPH. Pi)~~rtIemy RID. DkeSamec,M.D JudyJones,
KarmA Cowboy ccGLab/EpIofayCasos N,n,,OSogy D~n~saeNan,gF4,oaaa,(asap
W,rO N 1555 James LubE M.D. Hunt Batjes MD. (asig~n Milligan, NH
MasyNMandn4NN.,M&N. obertsosEM.D. JisoamMcCullejiM.D ThaaoMaadEDddHaDhMooag
CR4. * tooopaswycass
PAGENO="0511"
507
22
DebbiKarwoski, RN. and tothosedonorr whose grfls wore Judy Bean Dr KennethP Carbon
Doreen Reynolds, RN. roonved a~~wo time. J C. Beaskv William Caroington
osue.,~ ~suiorizoog Brenda SueAamon BeaunontHospita4 inc. frffrcyA. Carter
BenjanunH E Breitkmeua Sosan,Abraham DanielleL Beaver Dr &Mrv Norman W. Carter
Dir,sm Pao~or,! Can PM Adans Mv &`Mmv Stuart W. Bechhamn Geoff W Casmy
Marianne Wattero RosemnaryAdams Dr Mike Beene Mv &Mrv Dennis K Cashen
AdrsnsoraucaOffiarPathstsv Phyllis Ahins ThereseK Bellar Cynthia Castillo
Maria G. Alegria Anna M. Bendetsen Wandal. Castro
ibicicarsi ~ Barbara M. Alexander Dorms Resch Bennett Donna K Causby
BetryAlldredge Diana C Beranek Mar~aretR Charnbero
Chuck Monroe AllSaints Episcopal Hospitals Robert K Bersano Naneyfo Chandler
DrPo,ssOySsrxas ThomasAllred Beta Signa Phi Sorority S. A. Channer
Jim Hayrnan, K Ph. Allreo Inc. Leah Betts ChapterFJPEO
Alpha Omicron Theta Benar County Hospital District Charity League
Thno.orP5ysia!Moiidns&OshoOthsosior American Associalion Poison DeDeB. Bad Jsnrue Cheek
SharonDanzels contro(2sntero Santo Bisignano,Jr Children's CancerFund
osrou~pwosssirg American Burn Association Viola Black Children~Medscal
Ann Heape, RN American CancerSociety Debra S. Blackmore Center of Dallas
Dinsor DrN7's50~~0 American Cyanamid c~,mpany Suzanne Blakeley - Lrnda Chslds
snCurmorss American Diabetes Association Carla Bland Mary Kin Chrssty
SmnsthLausence American General Group JM. Blanbon Mr &Mrs~ Ross Churchill
DrraorD4o ofozunrj/PuOcSofssy &rs~om ~ Janss Blsssett Citiaen~Developrnent C~
Melanie Landay, ART American KidneyFund Blockbuster Video City of Fort Worth
DinsrRsspinosy Cars American Medical Electronics Inc Blue Cross and Blue Shield City of Grand P-carrie
Sharon Carbon TheAmericanPetrofinaFoundation of Tes,as, Inc. City of Lancaster
Ro1A RN EduorsaL Ardel CherieBoeltcher City of Richardson
moaos~'zsgcazssoas?o~ns AMKAosociates PalricraBokacek June Clark
Lisa Little MarshaAncona PoscaleM. Bollenber5 Paula Clack
D,risor V&urssarOirokx liseE Anderoon Alicia Bolt MaryAnn Clepper
RebaJ Anderson Mr &Mrs~ Gene Bouffard Clinical PediatricAssociates
COMMUNITY OPJF1kTED Mr &Mrv MackR Anderson Dr &Mrv PaulJ. Boumbullan CNA Services, Inc.
PIOIMuRY CAIN Dr &Mrv RonJ. Anderson JudyA. Bowlby JillM. Cochran
David Smibh M.D JanetL Anthony Edward Braddock Jan Coder
s~c,wesrnsoizar Antibody Associates DarlafaneBradforoi Dr Brian M. Cohen
GesrgaNewbyJv Mr &Mrv Williamj Arabs Susan Bradley Joel Colbeok
Caves co&csQf olauDssgOffiar Dr Ellon W Archer Kevin L Brabey Cabin County Community College
Mrv i.E Archer Peso Benjaman HE. Breitkreua Carla Collins
PARKLAZzD MEMORIAL EblenArena Barbara Breuer MartkaM. Collins
HOSPIThL AUXILIARY Mr Cs' Mrs. MichaelAriagrso AnnB. Brodgens Patti Coluell
Mrv Karen Lanier Arlington MedicabAssociation Mr &Mrv DonaldK Briscoe Combined Federal Campaign
pmussor, Arlington NeumsurgicabAssooiation JackL Brocrous JudsthA. Common
Mrs Pay Sexton GladysP Arch Henri L. BrsmberN HI Community Council of GreaterDallas
CcaP,xiasr5 DrJamesM Alms Gloria LesserBrswn Community General Hospital
Mrs. Mari~yn White JackAyres ViisletBroum Community Living Concepts Inc
SssmdVkoPssidsrss Rebekah Bachnan JudyL Bruce Community Pharscaoy
MN Jarries fling BarbaraA. Bailey AEN. Bnzmkz Mr &Mrs.James S Conner
Mrs RobertFreeman Mr &Mrs.John ~ David A. Bryson FrancesB Conroy
Roar Soooasy GreggL Baker JoaefinaA. Bugtai JulleA. Conway -
Mrs.John C Crank DeboraM. Baker-Ingersoll Rebecca B. Bullard Diana Cook
Corsmspssdirg&ocaay RoyR Balentine Jimmy W Bullion,Jr PabrioiaA. CooJ~ M.D.
Mrs. Clifford Ocksenhein Baptist Temple DebraL Burns, M.D. Margaret Cooper
szasurar Betty PecorBarrses JanetA. Burrill Sue &Bill Cooper
Ihaian E. bi'~ CharbesH Ba~-c~ DouglasM. Byrd,Jr Criaty Cooper-Williamson
Mrs RA.Fremming Bartbesville School District SheWi Code ClaireM. Corley
Audasr Harry BassFoundabion ,1uz1~ Callison Pierre Cassette Pmnductcona, Inc
Mrs. B.L Aronoff TheBassFoundalion Janis Campbell DavidL Counter
Pas5aoauar5oi Mr 69 Mrs. PaubM. &.cs,js The CancerFoundatwn Jay C. Counts
Harsyette Battles of Santa Barbara Bill Coo
CONTRIBUTORS BaXterHeallhcare Comloralion P~aymondP Canham Jeannette Crenskaw
Ryan Bayleus Mr &Mrs. Gary V Cantrell Deborah H. Criswell
The Board of Direotors of the Texas Baylor College of Medicine CaryMacJohn Cantu Bandy Crsw
FoundationforHealih Sciences wishes BaylorHealih Care Systems nnEan~y Ckildhosd Cenber J. Douglas Crsusler
to thank thefallcioingdsnomsfertheir BerUniv~yMedicaiC,erder The Caronetussm* Karen Cmnyte
gifts madqsriortssDeceiiiberl2, 1989 SarszMunszyBes.ll LisaM. Carey NiercaL Cua
PAGENO="0512"
508
23
Gasyf. Cu9xpper Lucy Ellison DianaL Gibson BobD. Harrison
Charles W Cunningham BethA. Ellsszrerth Masguerite Irene Gibson Mao Harrison
DoE Gary Cunningham Bess. &Mrs EncJ. English Caro~yn T. Gillert Shannon Hartigan
Mv &Mvs.J. Robin Curry EOS Technology Corponstion Elizabeth Gillett LoiiEvelandHarthne
HannaR Cusic* EpiocopalDiacese of Dallas KatherineA. Gilliland PatsidaAnn Hatfield
CutshallFamily Linda A. Eppeenon Mrs. Lauren Gillin CynthiaL Hatzfeld
CriotinaDakin MargaretEpplrr Dv Alfrrd C. Gilman, Glenda Hayes
Dallas Cares Dana CM. Epstein GirlingHealsh Caog Inc. HCA Medical Center of Plans
Dallas Clay Pnsslucts, Inc. Ruben &AbnaEsquivel KathleenE. Glass HC4 Medical Plaza Hospital
DallasFami~y Hospital SonjaEotep Glass, Inc. HC4 SouthAustin Medical Center
Dallas Independent School Distrid SusetteE. Estorque David G. Glictisnan Ann BuserHeape
Dallas NavalAirStatisn Mona Everett Mv &Mrs. RusoelA. Goad DorothyK Heerensa
JayaDamodaessn Exodus Trust Kalhleen McCarthy Goeller Karen Heller
Lynn Dangelmayr ExpectA MiradeFoundation GolfforKlds 1988 MasjorieHenderson
Dv Richard H. Daniel Fairbanhs Internal Medicisse and Laura Gosnes MarthaA. Hennesnzsn
BrendaEDaniels Diagnsoic Cenle~ Inc. ApsilE. Gonzales. KimA. Henson
ChsistopherDasets j Lesvia Falcon Roberto Gonzales GilbertA. Hernandex
EdwaniLDavss FamhyMedicalSercices,RA. Tom C.&LulaE Gooch PalmaHerssanxjes
Judy LaneDavis Mv &Mrs.JoeFarsis Good Shepherd School Mv &Mro.j L Herring
VoJerieDavss MargaretFee VidaM. Goode JoeB. Hester
Mv Is' Mrs. MacGregorWDay BlancheFeldman Theresa Goodszin HesctettPacisard
HenryD. DeBersy, III LucyFelso Gwen Gorrnan Luann H. Hicks
BeatnceDeLaGarza WilliamFerguson Mv &Mrr.JeraldM Gottlieb Laurie Higgins
Debro Services Co. MaoJ.ebneFewell ByronD. Graham Alexis C. High
B.C Dec*er~ Inc PatsictaL Finnell GriaterDallas Csmmuni~y Mv &Mrs. B.j Hill
Del MarAvsonics Lisa Fitzgerald of Churches Hill Country Mensorial Hospital
Mv &Mro. Conception Del Rsoario Fleetguard Inc. Anthony Green A. Paula Hire
LuxSantosDoLaCruz Douglas D.Fletcher Mrs.j A. Green Danna G. Hobbs
DebaAirLinex, Inc. Chmylll Flschen Green Oaks Hospital Mv &Mrr. ArthurA. Hedge
Della Sigma Theta Sorority J. AronFogiel Jean A. Greessell Edward Hodge
JoyceE. Dempsey AdsienneFoote Dv John E. Coffin Hoffrnann.La Roche
Dv ShashanhDengle AbceForsl Judy Griffith Margaret Mullen Hogan
Dermatology Cenlrg RA. EartA.Forsythe M~ &Mrx Jerry Grissorn KzsthyE. Hoggao
DPWlnfection Control Group Fort WorthPedislric Clinic Gricornont Hospital Sandra Hotdcrafl
MissamDiaz NesleisFortenberry Mn Is Mer. Grant H. Grothman Ho~y Cons Cadsobc Church
DeborahDicshey Barbara Foullse Haney S. Gruber Hood General Hospital
RitaPThllsn Gretchen D.Fox Joan Cozen lone Hoover
ImogeneDillards Nikolous TFox GSfHydraubcs Mv &Mrv S. RsgerHorchosc
Lynda Dixon Dorothy WFranko, 1W. Mi &MrvJimmyL Cue Mv &Mrc Charles Horton
Dodors Hospital Mr &Mro.DennisjFresso MaryM Gutierres LindaL Horses
CamiliaDodgin D. GilbertF,iedtander EdaniB. Haldeman,Jv Kathryn H. Hey
MaroelaE. Donadso DonnA. Frizzi HelaineHamelman KathrynA. Huber
Beabice Holland Dootey Mv &Mrs. WillianMFrysJv MasyJoe Hamilton KalhleenE. Huffer
DousntoumDallasSs. Patric*'s MarhFugill Virginia Hamilton Karen Parfill Hughes
Day Parade RogerFullington DonnaE. Hammock Marityn Hughes
AnnM Drumm Mv &Mrs.Jamer CFurr MonetteHamrrond Humans
Kay K Duckuorth Sandra Galitser She~iK Hance Hunt Oil Company
GretaM. Dudley KathleenE. Gallagher MvI Is' Mrs. CR Hanhins Wendy Hunter
Duncanville Independent ER Gammage Mn. Lauren Hanky ThomasE Hurtz'Isant
SdzoolD,str,ct Rosemarse Gardner Janin~eHannon DeborahD. Hushey
CtmnistineE Dupree LesterW Garland JeannetteE. Hspp IBM Corporoztion
Diane KalerEady GarlandFireflghtersAssociatisn CarolAnn Dunn Harber IMSArsesica
Mary Brigzd Earthman PatsyD. Garner Mv Ir'Mrv PhitHardin Infant, Child and YoungAdub
EastDallas Health Coalition Mv Is' Mrs. Harold W Goriest Derehil Harper Medical Association
EasterSeal Sodetyfor Children Peterlt Gartner Harper Kemp, Clutto, and Mrs. B Lindridgelnglier
YolandaN. Eballa Ronald Garvey, M.D. Parker; Inc BrendaJoyce Ingram
Mrs Eldonj 14gm Gaston Episcopal Hospital Dv David C Harper The Instrument Data Center
Mv &Mrs. Heinz Eidhenussid Foundation~ Inc., EmityHarreloon Intersearch Corporation
Mv &M,n. GeneEisenscher LynnL Gauman DonaldE Harris IrningHealthcareSystern
Eli Lilly and Company ~ Skrzrla Gay Mv Ir'MevJ. Pat Harris DongJadsson
Edna H. Elliott Genollcreen, Inc. Linda Harris Mv,. GrantA.Jacissson
Ellr.sAnn Elliott Mv Ir'Mrs. Rj Georgr Sandra K Harris Mv Ir'Mrv RicharslJackson
Mv Is'Mrs.Jsff Ellis Georgetown Hzspilal Harris Methodist Health System EdwardJasko
MaryEllis Georgetoson University Hams Methcoiist Fort Worth DebraKJaus
PAGENO="0513"
509
24
JaishreeJeffrey Mrs. &Mrrc RodgerL Leys Medical Arts Cli isAssociottkm DensseL. Nagid
Donna R.frkel Mo &Mrv John WN. Lim of Corstcana Mr &Mrt~ William B. Neaves
AdJsmnings DianaE. Limon MedicalCnter of Plans Gisela T Nelson
Johnson &Swanson, PC. Patrrcsa Lind Medical Education Systems James Reo Nelson
Jacqueline Yjones DianeM. Lindal Medicarents Company M. W:lltam Nelson
Lillian Jones BettyE Limo Mediscsss Mo &Mov Thomas N. Nelson
TerryLJonea JeanetteM. Lisiechi Donna Medley MyrlleFayeNeslntt
Willetta Jones SharonA. Lloyd lhckMelando HaroldE Newman
Do &Mrv Ch[fA.Jones,ft Beth Christine Lohr Memorial Hospital of Garland Ricky Newman
GraceA.Jopling Love in Action Memorial United Methodist Church GayJ. Nicodemus
Yvonne S.Jordan Mv &Mrs. LamarLovvorm Philip B. Mendershausen North Carrollton PedsatmcAsaovrates
Mv &Mrv Michael WJorgensen TheresaA. Luckino Cristina Menking-Hoggatt North Runnels Hospital
DavidJostah LauraE. Lueche Mercy Health Services North North Tec.as CalleorAssn.
Junior Charity League PeggyJ. Bollon Luippold Mesquite Independent School District No~th Teoas ClinicAssociation
Junior League of Dallas, Inc. JodyA. Luke Methodist Hospital Nor~hern Oklahoma Oncology Clinic
Vic*iLJurney Annesta G. Lunde Metreo Research Corporation Drecqry NanesNoststz
Jerry Kagan Sandra Lynn Lynch Metro Medical Credit Union Jack M. Nottingham
KaiserFoundation TheLynchFoundation Peggy ManntngMeyer Irene Novak
Donna Kangas Mv &Mrc Frito Lyne Rosemaria Pro4o Meyer E. Russell Nunnally
Do M. Kasemi frff Lynn Mv Cr' Mrs. Brian L Mibus Susan Nussle
Buddy Kaolow LypkoMed, Inc. Midway Hills Christian Church Cathy O'Bryan
M.G. Kent DaveLytle Midway Park MedicoS Center Angela O7sTeal
Miriam C Kettle,' Cindy Mabry MarthaA. Miles Pamela Lash O'Neill
Janice 0. Key NanoyD. MacCreery Miles Inc. OcczdentalChemtcalCorporatzon
Mv &Mm. CraigKilstrom liVilliartE Mahler Jenny Bates Miller Deli Olscher
William Kim Kelly C Halley Lois K Miller HarrietL Ondrasek
Do Frances N. Kirrbrvugh MaryE. Mancini Mr &Mrs. Murry Glenn Miller Carrie S. Orleans Roost
ClaireE. Kimpton Mia K Manning PatmcsaA. Msller Maryj Orr
SherrieL Kinasid Mansfield Hospital V Terry Miller OryvEnergy Company
Carey G. King Jr March of Dimes Cheryl Millihan Semi Meke Osemwegse
GrantE. Kinser Stephanie Marchbanhs The Mississauga Hospital RaeleneA. Oslund
Rebecca A. Kirby Mr &Mrs. Fred Margolin DoJere Mitchell Mr &Mrc Walter Ostsrgren
Mr &Mrc Stepkenj KJafJke RutkE Marshall Monica Mitchell OurLoady of Lourdos Church
Mv &Mor. HaroldF IDeinman -Margie Msrslett Donna K Mobley Our Lady of Perpetual Help Church
Helen K Klop Christinej Martin Carla Moffrtt Pals Pinto General Hospital
KE. Koenig ElmaLaura Martin Claire Mohney Nancy W Park
Susan G. Komen Foundation Gary Martin Sharon Molest Mv &Mrs. Charles Parker
Sharon W Koplan JanetA. Marvin Do Don Molony Lynn Parker
MacyE. Konik Mary Shielr Hospital Mrs. DeborahAnn Monsers Parkland Memorial Hospital
ToyaKreits MaryviewAcademy Inc. Montana Deaconess Medical Center Aussltary
NancyD Kruh MichaelG. Mask Lisa Monteleone ParklandNursrsAlumnt Assocustron
Patricia Christenson Kruse MiriamD. Mason Montessori Children's House Mv &Mrc G.N. Parrott
Mariamma Kuncheria Ava Massey JC Montgomery,Jv Cheryl S. Parsers
Katherine TiCker Kuna Bernadette May Stoma V Moody Thomas Peacock
Roseanna S. Kurto JM. May, HI Janet H. Moody, III Tern Pearson
EarlirseKutscher Mv &Mrs. MA. McBco Mr &Mrr. Lee Moore Mr &Mrs. WilliamA. Peery
Locke Highlands Church of Christ Claude McCain,ft Milton T Moore,Jr NanoyE Pena
Lakewood Hospital Richard N. McCally Marcia Garrett Mooto Susan M. Pensiero
Kerry L Lamb Mr &Mrs. BobL McCrory Thelma C. Morales PepsicoFonndation, Inc.
Mr &Mm. Daniel Landis Rashel Hanna McDaniel MtchelleMsreno Mv &Mrs. Steven Perea
C. Michael Larson Kathleen McDonald Susan Morgan Peterbili Motors Company
Janet B. Lawrence Paula McElheney PS. Morgan C.B. Peterson
CynthiaD. Lear Paul IC McGee Katky Morrow Kent W Peterson
NealanR Lee Do Frank P McGehee Mr Cr'Mrc Grady C Moss Do Patniciaj Peterson
Randyj Lee Mr &Mrc Jerry McGowan Melanie Moyer Paul P Petrue,telli
Jacqueline Leehan DouglasD. McGregor Stacey L Mukm Kunjamma Philipose
ChnistineLeibham Fionnuala MoKenna Barliara Munforsl SabraA. Philla
Charles V Lemmon, III Mr &MichaelMcKenna LorraineMurdock Piedmont Hospital
Brenda S. Levbarg Debraj McKibben M. Palricia Murphy Joan B. Pique
Cynthia Woods Lewis McKinney Indrpendemt School District Dianne Murray Debsrah M. Pisarshi
John IC Lewis,ft Mv &Mrs. Larry G. McLellan EliaabethL Murray JoAnnPitanoa
Rubyj Louis RickMvWurlen Mv &Mrs. DarinL Musick Playhouse
LewisvillePediatricAssociates Billie Mead AliceD. Myre LeonidasPoLkMernsonial
Margaret Roseann Leyk MedicalAnatysis Systems, Inc Myrtle BeackHospital, Inc Sally Powers
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25
Presbyteruun Heallhce.reSystern
BennesE Sandifer
Laura L St John
Laura Ycelma, KPT
Vdma Price
Mrs. Morton H. Sanger
WalLaoeL Stockton, HI
NancyA. Vish
Dr BalyPssrofer
The Psychological Corporation
J.Y Sargent
Mr &Mru RonaldA. Sswoia
Karen Stone
KayL Stout
JoAnne Vobaurn
Cars Vornberg
DebraD. Pylate
Mr &Mrc Douglas G. Ruder
Dr John Sauctdlle
Daunts L Sayes
Mike Stout
AndrescM. Streitfild
Glenn A. lbs
Gary K Vrba
A. Ruth Ragsdale
DebbieK Scarbrough
Lisa Joyce Suhany
Gary L Wagner
Raleigh Medical Group, PA.
J. Randhunee
Bernard Schaenen
RonaldJ. Sc/cell
Alice Sunny
Mr &Mrs. Kenn Sutton
Casnilla Beth Walker
Timothy Wallace
DauddP Ranney, M.D..
Schesing Corporation
Renee T Srcjda
Mr &Mru Kescin G. Walsh
ShsrsieL Ray
Wilson Schoellkopf,Jr
Ruth Swaab
AviceL Ward
Dr Maruf A. Raazuh
Mr &Mrc DouglasA. Readsr
MarthaE. Schueler
Melissa Schutse
Mr &Mrc MarioP Sylscestri
Wanda Talde -
Patty C Ward
Kathy Washburn
Douglas C Reber
Rebecca Schscarnbach
Teresa L Tatambas
Dr &Mrs. Myron Watkins
Mn &Mnsc W K Reed
Lynn L Reese
Dr Donald W. Seldin
Mr &Mrs. RobertD. Sellers
NanA. Taliafesno
Dr C M. Tolkington
Judy V,tutson
Andrsuc William Watt
Mm. Richy W Reesses
SerscsceMerchandsse
AIr &Mrs. Robert Tames
Juanita Wearer
Msgr Robert C Behhenper
BecerlyRenhea
Lecern M. Shattuck
ChniatopherA. Skate
Debra McKee Tarantino
Target Store T-71
LynetteA. IVeigelt
KerryP Weiser
MananneE. Renaetti
IVendy H. Shauc
Toasco Industries
Gary L Welch
RepublicAuto Supply Co.
Sherscood Medical
Diana Taylor
Joanne M. Welch
Dr Co'Mrsc Jack Reynolds
CL Shirnek
Mr &`Mrn. DonaldE. Taylor
Linda M. Weld
Story L Reynolds
Sarahj Shs,bley
Kantrina Taylor
Karen A. Werstein
Mr In' Mrs. MartunK Rice
Robert Shughart
TelophoneFioneers ofAmerica
Michelle West
Mr &Mrc RonaldP Rice .
SiglerPTA.
Temple Shalom
PattiA. IVest
Richardson FireFsghtersAsoociation
DrJ. Patrick Sikors
Hoi Ching Tong
Per. CV Westapher
Richardson Independent
School Dsstmct
Richardson Medscal Center
JennseRsley
Annctte Is' Harold Simmons
Harold SsmmomsFoundostion
Sss BLabels Corporation
Mr &Mrs. William C. Shavdakl
Dr Bruce S. Terrill
Tunas College of Osteopathic Medicine
Tesas Hospital Association
Tunas Women's Uniuersity
Mr &Mrs. Otto K Wetae4Jr
Mr &Mrc Rock bVeyand
PA.S. Wheeler
Mr &Mrs. Store Waite
i
HanoyA.Riiey
MrIo'MrcPauljSkebon
TeooosaHeallh&SafetySern,iceo
Dr&Mrs.DsridA. Whiting
Rinasn &Assocsatos
Chnstine Runner
. J. Paul Sligar
Dr AbceLorraineSmith
Mary P Thoosas
MildredE Thomas
Susan M. Whitley
Kathleen H. Roberts
Julie G. Smith
Thomason Hospital
WP Whitmore
Julie Wicks
Mary Kathryn Roberts
PhyllisA. Roberts
Mr &Mcs. Millard T Smith
Stephen P Smith
B,h/y Thompson
LoiuraE. Thurman
Dr Sharon L Wiener
Dr Kenneth M. IViggins
DebbieRobertson
SusanA. Smith
Denise Ticker
Laura A. bVilemski
Betty Lee Robsra
ThsmasL Smith
Diane Timmons
MsryAnn Wilhite
Anna L Robinson
Smith Research, Inc.
Mr &Mrs.J. Doug Tipton
CadineM. Williams
Cindy I. Rodgers
SmsthKlsne Beckman
Janice Thland
Don A. Williams
.
IlimberlesA. Roe
JuneB. Sniper
Fs).rene Tolbert
Betty W Willis
,
Vicsa L Rainier
South Community Hospital
TolerElementaryPTA
lVillsPointJanierHigh School
The Ralph B. RogersFouysdation
Jill Machue Pommel
Southicestern Medical Foundation
Spanish Village Restaurant
Sandra Diane Seth
Kathleen H. Tots
D'Ann Wilson
JeanL Wilson
Mr &Mrs. Ronald G. Rams
Mr &Mrc DennisA. Spears
Cyndi Tourtellot
JuneM IVilson
,
Ronald Md)onald Children's
Speaalty Care, Inc.
GeorgeK Thwles,Jr
Dr &Mrs. Thomas G. Wilson,Jr
,
Charsties
Spokn Hospital
Mr It' Mrs. William T Townsend
Winthrop Pharrisaceuticals
CatherineA. Ross
LynneA. Ross
St.JosephbHospital
St. Luke's Cathohc Church
ToysR Us
M,~ &Mrs. Royj Trees
Ron Witten
WoodhillPediatnicsAssociates
Rosa Laboratories
St. Matihias Episcopal Church
Trinity Pediatrics
Celeste Worley
RooanneLaboratones, Inc.
Mr 19Mev Allenj Rubin
St. Paul Medscsl Canter
St. Peter'sEpiscopal Church
Trinity United Methodist Yonth
Mo~.nfai Tse
Joseph Irion Worsham
Lisa Wright
RobertA. Ruby
Kimberly Stalls
TUElectsic
LoriJennings `Wright
Mr &Mrs.JohnnyL Rudder
MrvJ.P Rudsn,Jr
Tom Stanley
Mr &Mrs.Jarnesl. Stansell
United Methodist Dallas Central
District
JssseD. Yanoy
Debra Gail Yates
M.K Rudman
NanoieA. Stack
The United Methodist Church
Mr CoMm. MarkK Yeakley
Ma-Emita Pucks
JanetE Rupp
Mr &Mm.J.E Ruth
StateFarm MutualAuto
Insurance Co.
Stephanie Steinksuer
University of Colorado
UPEK Inc.
Tk~ UPSFonndaiion
Yellascdeo, Inc.
Dr Gakna Yoffe
Valariej York
Jeffrey K Sager
Dr VerneA. Steribridge
U.S. Life Corporation
Mr Cs'Mm. W Alan York
Dr DavidE. Samara
Mr &Mrv Robert Glenn Stephenson
AngelaD. Vandemlice
Paula S. Young
Mr 19Mm. Richard Sampson
SamsungElectronics
Deborah M. Stevens .
Dr Susan M. Stevenson
Lorry Vasquea
BobiJeane Vernon
George &Fay Young
Charitable Foundation
Dinah S. Sane/sea
Peggy Stuart
DianeE Vials
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Extended Page 1 1
The folliowing is additional information submitted to the Housing
Subcommittee from Mr. Robert Greenwald, AIDS Action Committee of
Massachusetts, Inc., Boston, MA for the March 21, 1990 Hearing
Record on Housing Needs of Persons with Acquired Immune Deficiency
Syndrome (AIDS)
StJ~JEI~T: Federal Hesources for AIDS Housing
Several federal government prngrass have the potential of supporting
the development of upacial needs ~s~sing, including housing for persons
with AIDS and HTVrelated i1ln~ or disability. EOCD is on record as
endorsing the use of Section 202, MSinney permanent arid transitional
housing proc!rams and Secticn 8 project-based assistance for AIDS housing.
HUT) has placed barriers to tar;etinc such housing to persons with AIDS
and has not recognized AIDS or HIV-related illness as handicape or
disabilities. Recently. HUT) has arrrcved a policy allowing persons with
AIDS to sntsr Section 202 Handic~pued and ?`~Kinney developserits -.- if they
otherwise gualify for suth housing. Section 202 sponsors could gear
services in persons with AIDS~ bat could not explicitly target such
housing for AIDS.
This me.soranduin raises sczm issues with respect to three federal
housing progress: Single Family Property Disposition Homeless Initiative,
Section 8 Project-Based Assistance, and the Lc~ Income h'ousing Tax Credit.
Sose relatively minor policy changes vould meTro these progress valuable
for developing AIDS houSing.
Single FasiilyEroperty Disposition Homeless Initiative
2~~R P~IEs 29l;-577 end 578
ISD estisstes that. 47,000 foreclosed. B1~~-insured homes (one- to
four-family residences) are available annually for sale. These homes are
part of the federal inventory of property identified as surplus property
potentially available for use as housing for the homeless. In a recent
published regulation. BUD uses the figure 4,700 to represent the pooi of
F~P~-foreclOsed properties available for sale or lease to providers of
housing for the homeless.
There are three sale and lease programs which vould use E~.-foreclosed
single family property.
Direct sales program. BUD provides a 10 percent discount on the
merket value of foreclosed properties. HUT) would sell a }icxtie to
a public or non-profit entity before the property yes put up for
sale to the general public. BET]) determines nerket value. Deeper
discounts are available for properties that are not bought on
the open market.
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Extended Page 1. 2
Page 2
Lease~with Otion to Purchase~cgraxn. HOD would lease a property
for $1 a year to a public or non.'prof it entity. The provider'
;would pay up~.eep costs. Typically, HUD~ would not pay rehabilitation
or repair costs, nor would MUD repair the property prior to sale,
The "providerS would enter into an~agreenent with a right-to-purchase
at the end of a;given nu~tor of months. The purchase price would
~be the sarket value at the pro-lease time less 10 percent.
~-1-~Hinnev Act Lease-Option Program. The Stewart B. McKinney
Ho~e1ess ~.ssistance Act Supportive Housing ~onstration Pr~raa
would provide assistance to public and non-profit entities.
Applicants moy apply for edvances to acquire property. There is a
sinaocnth lease-purchase option. As of July 1989, 220 houes had
been seld under the program, and B74 progress were under lease.
Aside iron the issue of whether HUD~ s discounts would to deep enough to
encourega~the develo~nt of housing for low.~income persons with AIDS~ there
are severaLzelatively single things HOD could do to sauce this resource
usable forA.I~ housing.
(1) Allow the use of Section 8 project-based assistance in
leased FRA-foreclosed property. Properties could to leased
for up to three years. Section 8 PEA ray he put in place
for as short as two years. Under th~ interim Section 8 PEA
regulations, P~ could not be used in HOD-owned property.
(2) Conduct a demonstration to use F}D~-owned inventory for
AILS housing. Set aside 100 to 200 one- to four-family
properties fur a variety of AIDS luouàing models.
Section 8 Project Based Assistance
24 CFR Parts 7gi and 882
On March 12. HOD published an interim rule on PEA in the Federal
Rec!ister.. The regulations rake conducting a PEA program difficult at the
state or local level and insert HOD's field offices into rany aspects of
project~:approval. Three issues must be addressed by HOD to allow housing
authorities to sake PEA work for special need~ housing.
(1) The regulations prohibit the use of PEA in:
(a) HOD-owned housing, and
(b) housing on the grounds ofipenal, reformatory, medical,
mental, and similar public or private institutions.
This provision (Section 882.709) conflicts with the spirit
of the regulations on Single Family Property Disposition
and another provision in the PEA regulations (Section
882.720): ~P~Pus are encouraged to establish preferences
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Extended Page 1 3
Page 3
for units in troubled. HUD-inaured subsidized multifamily
projects . - ~" Section 8 is one of HUb' a primary tools
for troubled property work-outs - to preserve low-incose
housing-
(2) HOD should approve separate waiting lists for project-based
deve1o~ent5, including special needs housing. Persons with
AI~ should already qualify for a high preference for public
or rent-assisted housing because must: (a) have low incomes,
and (b) are hcreless or are at risk of becoming homeless.
(3) HOD requires housing authorities to advertise for 30
days in a general distrihotion newspaper, and reçuires
applicants to PBI~ units to come in response only to the
advertisement. This is an expensive requir~rent for a
shallow subsidy program. This is riot a rec~uirement for
tenant-based Section 8 assistance.
Low Income Housing Tax Credit
Cenibus Budget Resolution Act of 1989
Tax Credits for Low Income Rental Housing was created by Congress
under--Section 252 in the Tax Reform Act of 1986. The legislation was
amended substantially in 1989. i~= recent legislation explicitly
includes Single Room Occupancy and scattered site housing amung eligible
housing rodels. These housing models are also successful models for
special needs housing.
The Co~nvealth of Massachusetts Executive Office of Cootnunities
and ~velopment is the designated Tax Credit agency in the state. To
conform with the new legislation and to reinforce the agency s comuitrerit
to special needs housing goals. EOCD established three priority categories
for allocating the Tax Credit. One priority is Special Needs Housinp.~
WcJ set aside 20 percent of its Tax Credit authority for Special Needu
Housing - housing i~-ith a s rtive service component -
BXD has explicitly ir~ledei housing for persons with AICS in the Special
NeseS Housing priority for Tax Credit-s.
~ onCDU.tage the deve1cp~t of special needs Ix~osing resour~, Congress
could clarify a provision in the recent legislation with respect to Tax
Credits for acquiring existing property. Congress specified several
credit-ions for aserding Tax Credits tO existing property. Existing housing
may be modernized to provide decent, safe, arsi affo~able shelter for 1c~-
in~te households. It may be converted to serve a special nes~s po~xi1ation -
for example, persons with ~ility or visual isçeirxrseits. The Tax Credit ray
be used also to preserve lou-income housing, including, federally assisted
~%. ~-`.F ,..r,~,-.r5r,, r~1- `r.rensurT~1t_
PAGENO="0518"
514
l~isir~ as ~sk o~ e~iiatiai ~ Extended Page 1, 4
~pri1 6, 1990
Page4
?~e:~~tan~ iu'i~ith Tax Cedits can be used ±or existing property
involve~ the ~transfer tO a non-profit organization - for e~on~le, an ~JZ~
~e~or~nization.~ Yettbe l~islation ~is üot. c1ear~ on what transfer"
aeans. Congress should cla.rifythis provision to include housing sold,
giftel, or transfer~ thm4i other azrang~nts that crxifer site ountrol to a
r~i-~ofit organization
PAGENO="0519"
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09/10/90 12:05 `~`617 437 6445 AIDS ACTION ~002/004
fl9SACHUSR~LTS EZECU%'IVE OFFICE OF CCIMMUNITXES ~ND DEVKI~OPMgNT (EOCD)
PROTECT-BASE!) 1SSISTANCE(PBA) ON EOCD'S SECTION 8 PROGRAM
FEBRUARI 1990
(revised April 1990)
DESCRIPTION OF EOCD `S SECTION 8 PROC~AM
- EOCD administers a 13,000 unit Section 8 program in all
351 cities and towas within the Commonwealth;
- EOCD stlbcontracts with ten regional administering agencies
to adminster these 13,000 units on our behalf;
EOCD's Section 8 program operates separately from any
Section 8 program administered by a local housing authority;
- Section 8 is funded by the U.S. Department of rousing and Urban
Development (BUD);
- Host Section 8 subsidy is tenant-based, i.e. the subsidy can be
taken by the tenant from unit to unit, provided the tenant
complies with program requirements;
Subsidy is provided through the issuance of a Section 8 Certificate
F or a Section 8 Voucher. Certificates require a tenant to pay
30% of their adjusted income toward their housing costs1 and the
rent and utility costs cannot exceed a BUD established Fair Market
Rent (PER). The current 2 Bedroom PER in the Boston area is $810.
Tenants holding a Section 8 Voucher are graranteed a rental subsidy
that is based upon the difference between 30% of their adjusted
income and a Payment Standard that is established for their
family size. Voucher tenants may pay more or less than 30% of
their income toward their housing costs, and there are no PER
restrictions.
WHAT IS PROJECT-BASED ASSISTANCE?
Project-based assistance means that the subsidy is tied to the
rental unit. When the tenant leaves the unit, the tenant cannot take
the subsidy (i.e. the Certificate) with him/her. The next qualified
person moving into the unit obtains the benefits of the subsidy.
Vouchers are not allowed to be used on the Section 8 PBA program.
Project-based assistance must be used in units where a minimum of
$1,000 per unit (including common areas) in work is required to be done
Un order to:
- bring the unit (or c~n areas) up to code; and/or
- to replace or repair a major building system(s); and/or
- to modify units to mahe them accessible to the handicapped;
and/or
* - to merge or create units for larger families -
PBA does not provide rehabilitation fends. Rather, it provides
the owner with a contract for long teim rental assistance (a minimum of
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09/10/90 12:06 `~`617 437 6445 AIDS ACTION ~003/004
~o years), which the owner can then use to secure the necessary
;~iiabi1itation financing, hopefully at more favorable rates.
50W CAN PEA BN USED TO ASSIST PERSONS WITIf SPECIAL NRRDS?
I I'BA can be used in: - conventional rental units; - SROs;
~.~ongregate facilities and -Independent Group Residences (IGR). Other
than the constraints of available funding, there are no restrictions on
~je number of units which can be subsidized with PEA in any particular
~jlding. In all instances, there are certain requirements which must
~e met. Sone of the most important requirements are:
- PEA cannot be used in properties which are financed (or have
been financed within the past five years), in whole or in part, with any
federal housing' money, with the exception of Community Development Block
Grant funds (CDBG) or Section 312 funds.
- PEA cannot be used in properties where the current residents
would be permanently displaced.
- As it stands now, PEA cannot be used for units within the grounds
of penal, reformatory, medical,, mental, and similar public or private
institutions. EOCD is seeking a waiver from this requirement. However,
this niay be a factor in project selection.
- PEA cannot be used for nursing~homes and facilities providing
continual psychiatric, medical, nursing services, board and care or
intermediate care.
- Rent and utility costs for a PEA unit cannot exceed the published
HMR at the time the unit is selected for participation.
-SEOs: - rent cannot exceed 75% of the OBedroon FMR;
city or town and HUD approval is required;
units must be private, i.e. not accessible to
anyone but the occupant;
- only one person may occüpya SRO.
-IGRs: - must receive Commonwealth approval from appropriate
agency; -
- must have a Service Plan for residents;
- must have resident assistant (who nay or may
not reside in the unit;
each tenant must sign a lease with the owner;
- no more than four persons/bathroom;
between 2-12 occupants/IGR,
- persons requiring continuous medical care not suitable
- Rents are based on the number of bedrooms in the unit.
The total rent is divided by the number of tenants in
the unit (otherthan~a resident assistant(s), if
applicable) and each tenant pays 30% of his/her adjusted
income toward this housing cost. For example:
3BR IGR, renting for $1000/month. Assume 4 tenants and
1 resident assistant. The rental cost for each tenant
-2-
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NOW IS TE~ThNT SELECTION PERFORI4ED FOR PBZ~ TINITS?
Tenants are selected for PEA units by the regional administering
ageIlCY. All prospective tenants must be placed on a waiting list, and
selection is done in chronological order, by date of application.
NITD will permit a special waiting list to be maintained for each
facility, reflecting the target population of that facility. These
applicants must also be placed on the agency's general waiting list.
Any applicants on the agency's extant list will first be given the
opportunity to identify themselves as members of the target population.
~f there are not sufficient applicants belonging tO the target
population on the list, the regional administering agency nay advertise
for applicants. The regional administering agency will consult with
the service provider to insure that applicants being selected are
eligible for the specific services being provided1 and to insure that a
suitable mix of tenants is reached.
Bowever, all ous meeting the special need to be serviced by the
PB~ unit must be given equal opportunity to participate. Clients of one
particular service provider will not be given exclusive rights to occupy
these nnits
09/10/90 12:06 ~`617 437 6445
~i004/004
517
AIDS ACTION
would be $250/mo. If 30% of each tenant's income was
$150/no, each tenant would receive a $100/month subsidy.
The tenants' combined contribution to the apartment
would be $600 and the regional administering agency
would pay $400 per month-
-Congregate facilities:
- Rents generally cannot exceed the OBR FMR; however
if more than two rooms, can rent with the 1BR F2~R;
- Each congregate unit must have a refrigerator
of appropriate size;
- Each congregate unit must have a private bathroom;
- Shared dining facilities must be present within the
complex containing the congregate imit ( s) -
-3-
27-986 (524)
PAGENO="0522"