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) PAGENO="0003" 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) PAGENO="0004" 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 PAGENO="0005" 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 Ż 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) PAGENO="0006" 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 PAGENO="0007" 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. PAGENO="0008" 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. PAGENO="0009" 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 PAGENO="0010" 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 PAGENO="0011" 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 PAGENO="0012" 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 2Ż 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- pršpriations 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 2Ż 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 nonmŔaningful 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 1Ż 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 8Ż 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.] PAGENO="0084" 80 APPENDIX March 21, 1990 PAGENO="0085" 81 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. PAGENO="0086" 82 -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" PAGENO="0087" 83 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. PAGENO="0088" 84 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 PAGENO="0089" 85 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 PAGENO="0090" 86 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 PAGENO="0091" 87 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 PAGENO="0092" 88 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 PAGENO="0093" 89 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 PAGENO="0094" 90 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 PAGENO="0095" 91 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- PAGENO="0096" 92 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 PAGENO="0097" 93 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 PAGENO="0098" 94 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 PAGENO="0099" 95 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 PAGENO="0100" 96 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 PAGENO="0101" 97 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 PAGENO="0102" 98 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 PAGENO="0103" 99 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 PAGENO="0104" 100 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 PAGENO="0105" 101 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 OIIIR 3423 III PAGENO="0106" 102 / 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 *ITR 3423 III PAGENO="0107" 103 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, ~Illt 3423 ifi PAGENO="0108" 104 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 *IIR 3423 III PAGENO="0109" 105 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 PAGENO="0110" 106 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 *fflt 3423 ifi PAGENO="0111" 107 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 PAGENO="0112" 108 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 PAGENO="0113" 109 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 PAGENO="0115" 1~11 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 PAGENO="0116" 112 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 PAGENO="0117" 113 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 PAGENO="0118" 114 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 PAGENO="0119" 115 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 PAGENO="0120" 116 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.- eRR 3423 ifi PAGENO="0121" 117 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. *ffR 3423 III PAGENO="0122" 118 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 PAGENO="0123" 119 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 PAGENO="0124" 120 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. *Illt 3423 ifi PAGENO="0125" 121 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: ěIIR 3423 ifi PAGENO="0126" 122 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 PAGENO="0127" 123 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 oˇ7O'~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. PAGENO="0128" 124 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. PAGENO="0129" 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 PAGENO="0131" 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. PAGENO="0132" 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. PAGENO="0133" 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". PAGENO="0143" 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 ~╝ `~)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 PAGENO="0150" 146 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 PAGENO="0151" 147 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 PAGENO="0152" 148 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. PAGENO="0153" 149 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. PAGENO="0154" 150 ~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/emeršency - 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 prÓvides 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 PAGENO="0155" 151 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 PAGENO="0156" 152 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 PAGENO="0157" 153 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" 154 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. PAGENO="0159" 155 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. PAGENO="0160" 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. PAGENO="0161" 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. PAGENO="0165" 161 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 PAGENO="0166" 162 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 PAGENO="0167" 163 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. PAGENO="0168" ~I ~Uli~ ~ ~ ~g ;,~ 0 ~3 Z t!i U) W~3 U) Z ~d ~ 0 0 t!i HZ ~ Z Z ~< 0 0 Z 0 U) H ~3 C) ~ Z U) U) H C) U) ~ Z U) 0 0 ~ H H 0 ~ 0 Zt~i~ ~ ~i H 0 H ~3 U) ~ U) U) U) ~!` ~ PAGENO="0169" 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 c:\word\x\nmc84l.Mar #llIMarch 16, 199014:50 PM PAGENO="0170" 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 c:\word\x\mcS4l.Ilar #llII4arch 16, 1990j3:46 PM PAGENO="0171" 167 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. c:\word\x\mC841.Mar #llIMarch 16, 199O~3:46 PM PAGENO="0172" 168 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 c:\word\x\mcB4l.Mar #llIMarch 16, 199O~3:46 PM PAGENO="0173" 169 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 c:\word\x\r1nc861.Mar #11~March 16, 199013:46 ~ PAGENO="0174" 170 - 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 c:\word\x\rec84l.piar #llJMarch 16, 199Q~3:46 P14 PAGENO="0175" 171 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, c:\word\x\nmcM4l.Mar #11~March 16, 199013:46 PM PAGENO="0176" 172 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. c:\word\x\r,nc841.Mar #11~March 16, 199O~3:46 PM PAGENO="0177" 173 1988 Northwest AIDS Foundation Housing Report Submitted by Kurt A. Wueliner, Housing Coordinator February 27, 1989 PAGENO="0178" 174 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 PAGENO="0179" 175 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. PAGENO="0180" 176 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. - 11 - PAGENO="0181" 177 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. PAGENO="0182" 178 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 -2- PAGENO="0183" 179 ~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. -3- PAGENO="0184" 180 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- -4- PAGENO="0185" 181 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 -5- PAGENO="0186" 182 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 -6- PAGENO="0187" 183 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. -7- PAGENO="0188" 184 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. -8- PAGENO="0189" 185 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. -9- PAGENO="0190" 186 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. - 10- PAGENO="0191" 187 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. - 11 - PAGENO="0192" 188 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 -12- PAGENO="0193" 189 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. - 13 27-986 0 - 90 - 7 PAGENO="0194" 190 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- PAGENO="0195" 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 - PAGENO="0196" 192 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 - 17- PAGENO="0198" 194 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. - 18- PAGENO="0199" 195 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 PAGENO="0201" 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 ~e˝ial 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 certifi˘ates 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 wš╗= 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 ßonsortium 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). PAGENO="0206" 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" 205 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 PAGENO="0210" 206 AIDS Deno JunÓ 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 PAGENO="0213" 209 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. PAGENO="0214" 210 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 PAGENO="0215" 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. PAGENO="0216" 212 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. PAGENO="0217" 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. PAGENO="0218" 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. PAGENO="0219" 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" ~ ~. L ~ 1~EopL~. k~(H ~ ~ ~l~&- ~ ~\TCHCN~ ~ ~O~E ~ ~ ~ P\~ ~J~TH ~ ~ ~ ~E~T ~\M ~\c~5S T~ T~ SER~i~ES ~; ~\ ~-~O~JG~ \~2~ C1~ ~ ci~se~ ~CvE~ ~ ~ ~ ~ 0 ~P~C~6 L~-\ ~ `~`1 \~T~$ ░ ~X~YP~TEL>J ~ cc~i~ ~i r~io ~E~~-š Livi~- ~ ~VE ~NJ ~ ~R~\3f. L1~r~ ~ F~U~)~ ~ `NS~rTuT~L ~TT~GS U(~ ~URS( ~ ~ Wk\LE ~6LE~T5* - PAGENO="0240" ;~ HOtJSE#1 CA~ PAGENO="0241" 237 I ~/ ~ `~) r :1 ~: PAGENO="0242" 238 PAGENO="0243" 239 ;6 ~ S ~ :~ ~ `p:: ~ r~ ~ ~ ~ ~ ~ `~ ~ \~:::;~~ s~š~ ~ ~ ~ ~ ~ ~ ~ ~ / ~ ~t if ~ r~ T~4~ii PAGENO="0244" a C PAGENO="0245" ci ~ ~ ~ ~ ~ ~ :;:::~t %Th~ ~ ,`, + &~__~J~ ~ ~ i!$~T~rU Ft i~fl~1 4+ht~i r ~ ~X~j r ~ c~' LII HIQ L ~4~1 h ~ ~ ~ ~ ~ ~ & q k1~ I J~wcx~;~ ~ ~: <~ :c~~~&\~ ~ r~ifl \ Nh L ~ r J~~:~n~$ hit 7i!~ F ~ I ~ ~ h4~1 ~ ~ ~ ~ U t ~ ~ ~ \~*~ ~ ~ ~ a ~ - it 4 4 t~iIipr~ ~tgt ~44\4 *4 I14f1~I4$~ I * gb*~ š~t~s r~J:t~i ~JI1 I PAGENO="0246" (I) 242 PAGENO="0247" 243 :~~_ ~ 4~: ~ ~ ~ ~i~; : ~ ~ ,~ ~ * ~ q ~ ~ (* ~ ~l*~*H*~~ *~**~ ~ ~- I\4 ~:T~:~~: ~ ~ ~ ~ * ~; ~ * ~* ~ ~ ~* ~ ~ ~ ~ 1' ~ ~ ~ ~ ~ ~ ~ ~ /~ `~ ~* ** ~ ~ ~ r~ ~ ~ \/ ~ ~ ~ -~;~ ~1,1 ~ ~ I ~ ~ ~ ~ ~ ~ -~-~:T ~ ~ ~ I ~ ~ ~ ~ / ~ ~: ~ ~) I &~1 I~!~Lt-< ~ **~~~I ~**/** /~ * I~. ~ ~ P:*~:~:~T~i ~* ~ r~:;'~, - / -~ I i~ I ~ ~ ~ ~ ~ I C) I J I; ~ F I I ~*~/ ~* m~I ~t4~ 1_cl 14 PAGENO="0248" 244 ci Cl) B I PAGENO="0249" 245 PAGENO="0250" a :5 PAGENO="0251" HOUSE # S u F r i ~ r \~ L1 4 1 ~ PAGENO="0252" 248 PAGENO="0253" t1~ ~1 4 PAGENO="0254" 250 a) 0 PAGENO="0255" 01 PAGENO="0256" 252 V PAGENO="0257" 253 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.ę 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" ~HVO ~NIflNIINO3 ~ oc -u~q ~q Illh~ jio~uadBd wtc~ O3UEIflSS~ as~qd s~q~ u~ piauodwo3 ~ su~1d aotuos pu~ c~iAt~ u~ sapnjou~ siq~ spa~u ~ši~~aq i~u~u~ -2o1oq~Asd 8u!uxnsuoo-j~~ ~ SJ A~U2~P ~ U~ ~SOUIW ~II~ IOJ S1I~3 SW8!13 JO SN JO 0103 O)~O~J O~J Si oa~o1dwa aq~ j~ puo tp.xnqa `spuouj `~puoj `osnodo .io ~JJsIeAJp eqj~ ~Juouiuo.z~ua eAfl~Ioddns ~J!ssOoOu ThtO SJ s;sanbeijjo-ouxq ioj iaq~o ~uo~jiu2ts o jo ssoi `~1;uo~iodwi puo ~ o q~t~ s~eu eq~ úc~!IOJ;uapUuO3 ~~&`░~302JP ~cm `.XOIflSUJ O.IO~ *OpJsO ~~JjJqo;s 110 s;nd e~uo.rnsui io~jnq uoo o~ouoJssajo.id aioo ~t.u `zosiuodns ~cp~ ~sru~ j uo~ ouj~,, puo ouio~u~ `qof jo sso'j 2upu~eq~t ~poe~sun puo `0)190 aa~oIduxa popojui oqj~ ~ -JOAO SUJOOS ~8)jO9j aq ~pnas,, eq~~ pou~o.t~s aq ~ow ~ ~ Jnq -O~JS .IOJ s~uauxoirnbo.i Auow axo oioq~ p~noqs sasso~ jo toaj ou.r~ ~no-2ui~o `ew~ amos .ioj a~qo~o~o eq ~ow q~oeq `)[IOM O~J a~qo in~s St 1ue!I3 aq~J e~u~ ~oJo~~oqaq puO esn ~oo~uioqo pasoeiou~ ~o3Js~qd poo~j uomuio~ oio sseu~je~t *9uOJ~UOA.IO~JUJ SISU3 JO s~cop ~uoqod-ui `opp~ns JO S~JT(2flOq~J q~JM s.ioeddo jo axoe~ ~oq~ SMO~S 83UO~JAO Ot{~J `03U9 tT~JIOaq IO~JUOW O~OiU O~Ou OJ J000flun ~c1jonsn 2uidoo jo esoqd TOJ1JU! 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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)šatedlust 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 MaIn˘tt 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 jtrÓpeiw,: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 PJěě3 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 reallš~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 ŔomÚ 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 footnÓtes 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 šfljp~ 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~šLUS 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 PAGENO="0307" 303 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. PAGENO="0308" 304 -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 PAGENO="0309" 305 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 PAGENO="0310" 306 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 PAGENO="0311" 307 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 PAGENO="0312" 308 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 PAGENO="0313" 309 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. PAGENO="0314" 310 - 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 PAGENO="0315" 311 - 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. PAGENO="0316" 312 - 12 - 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. PAGENO="0317" 313 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 PAGENO="0318" 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. PAGENO="0319" 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. PAGENO="0320" 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. PAGENO="0321" 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 PAGENO="0322" 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. PAGENO="0323" 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~r˘wn Netuz AIDS. plan is `dÚath~sentÚnce' 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 ~ ill˝~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 PAGENO="0325" 321 Photo by Gerri Wells -21 - PWA COALITION NEWSLINE March 1990, lssue #53 PAGENO="0326" 322 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 PAGENO="0327" 323 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 PAGENO="0328" 324 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~šate~~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. PAGENO="0329" 325 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: PAGENO="0331" 327 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 PAGENO="0332" 328 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 PAGENO="0333" 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 PAGENO="0351" 347 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 PAGENO="0352" 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 PAGENO="0353" 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 PAGENO="0354" 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 PAGENO="0355" 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 PAGENO="0357" 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-relßted 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 pÚrsons.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 hÓusing, 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. 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Hr->OC Vu ram 2HZXI>>< xoHVur> tfl*H-'-' 2(1-0) c-2 O"IP1 `tIH'I OHP1 >VtlZC'- 0 xx X1OVOOHOP1~ -zmVumZ- corn >Z01IAH r U)'1 (I) OP1VO 0>OZOP1, omz> P12 0020 -OC2U)HH~1,0WH20W V0200) P12> P1 00 O -HO VUHH'tIP1Z HOHO(00) x mto - 00 rXIP1OX1 0 rnOOcOmmZO `0")- zm"1>>OHO'-'~ OH X2001COXJXO to- mrz 0-u", - XZOH H H O>< 2 c Vt Z>HOUtT)'C>> :2 303 ~`>> 230-Z `Uccnxor U) OH ZHr or 203 Vt o->zr- -u ZH~-iZHH-X>tfl HX -Xtr3 <0113 < O-C-Z0) zr Zoto < OHOC'I mrn,omo-Z2- 2'U Ca 22 OtTI< ~ ~m `1 C" 222 (`I'll HWC0010>> to 0--to. 4< 0200 **Ototo HO 2 00 CCZHLA'-OH rio> >22 ~2ctrP1- H'-P1 (0020P1'░ >P1O H cVuP1200200to ~X tno>omornc P1XXHH ` H> (0201 02 >-r mHr>>X1P1'U <(I) fT) HO) tommHtoO - 0(0 91 :020mw "izI>tn'to > o wc< 220<0 H'H H0-'-VC 2 0X'-OZ H'U to C H xr --ZZWXH > r zo'crn x<- P1>CiltOti) >01>2 > XC 0101>2(00 0 tuor OmPiH P1<> "1< (00 :0(020 P100 (0200022000102 < >`1tfl 0 - r< <20 `tlO >NWP1 "IH 0>20 mr'oOZ Hzz(az-urmto> 500 0- OHH t'Itn HHOH'U'C toro cor- H >2- WV) tn S -mP1 ><`-` U) 22 <-`1W HP) (TIHH'-' - H -t C P a 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) i:!. S's,s, I 1. s, IS~s-e .1. (5 II,!,, IS `II. 11.1). ISs~Is s/I.,, II ii. I,,,,! il/a, Ii,: (Sea (/as isa (S,~I'a I)'. J. I)((((51((s I)),,', /1(1 N',',,, I'eaIE,,'Is:see i,s/,' (S,,',,,,e 11(!(',( (;(,I(I(/',e(~ I/si,,,:,! 1.6 (`((`/5 I!,sII.,'I,s,a,, 1.5,' I.(/55(( .11,,:,,' ()L,a,s,,: 1,1 leSs, jS(I(i/( It'll,, .J,,s .\,, I,,'!! `s,!,!,, lie,,!,,, ,s/se,e ill). 51(5,(' 11,1,/s I~(((~ 15,6,,:,! II. Is:,s': (.1,,' III:, is,!,' (.,,:,,`e Ii((5 ,55I(i('. Mi). Ii,'s/,,s' S/see:. .11.1). II II,,,,,, .11. 1 E,a'euti,eStafT i'se,st,s: 1),,,,,, .ti,,e,j,, J. L,p,ts, 16.1). .`1s,~' /5 tiltS A I gas Is,,tI,Iee,, 1),e'ess' `1 hI,li,' Aff.,~,'s :1,,!:,,: I). IS'pjs' Ii ~ Oi/ier Si,j,!,,, (. iI~g',,~ 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) PAGENO="0468" 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 AÓt. # PAGENO="0469" 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 PAGENO="0470" PARxI~AND MEMORIAL HOSPITAL ANNUAL REPORT 1989 PAGENO="0471" 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. PAGENO="0472" 468 Parkiand Memorial Hospital Dallas County HthspitalDistrict 1989 Annual Report 1~ Introduction 2 Independence 5~ Messages 9~ Philanthropy 11 Beginning of Financial Section PAGENO="0473" 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. PAGENO="0474" PAGENO="0475" 471 PAGENO="0476" PAGENO="0477" 473 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 PAGENO="0478" 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, ParklÓnd 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 PAGENO="0479" PAGENO="0480" PAGENO="0481" 477 27-986 0 - 90 - 16 PAGENO="0482" 478 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, PAGENO="0483" 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 PAGENO="0484" PAGENO="0485" 481 PAGENO="0486" PAGENO="0487" 483 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 PAGENO="0488" 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. PAGENO="0489" 485 / C ) I PAGENO="0490" PAGENO="0491" -:1 PAGENO="0492" 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 Communišy 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 (~,-, -, PAGENO="0494" 490 PAGENO="0495" 491 PAGENO="0496" [:1 ] PAGENO="0497" 493 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~ PAGENO="0498" 494 "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~š Parkiand Memorial Hospital PAGENO="0499" 495 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~_ $__b$ź=!~ 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~. PAGENO="0501" 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 PAGENO="0503" 499 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. PAGENO="0504" 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 PAGENO="0505" 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 PAGENO="0514" 510 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 PAGENO="0515" 511 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. PAGENO="0516" 512 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 luouÓing 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 PAGENO="0517" 513 / 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 rešuires 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 t