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Program places those with AIDS in family settings to receive care

Addicted to heroin and sick from AIDS, Deborah Barnes had used up her money, her friends' hospitality and her family's ability to cope. For the past few years, her home had been wherever she could lie down, often in a vacant building.

But three months ago, with a little help, the 42-year-old former waitress found a place in which to settle -- with an unusual foster family in a small brick house in East Baltimore. Hundreds of other Marylanders with AIDS are not as fortunate.

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Ms. Barnes is a participant in C.A.R.E./Project Home, a state-funded program that places people with AIDS in private residences or provides services to help them remain in their own dwellings. Many of them would otherwise be homeless or in nursing homes.

Recently the program, which may be the only one of its kind in the nation, was named one of 25 finalists for the Ford Foundation/Harvard University Innovations in State and Local Government Award.

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Ten of the finalists will be chosen this fall to receive $100,000 grants; the others will receive $20,000.

Finalists were selected by the foundation and Harvard's John F. Kennedy School of Government, because the programs were successful and unusual attempts made at state or local levels to meet public needs.

Ms. Barnes shares her new home with another AIDS patient, a man, and the Project Home care provider, Madge E. Lewis. All three have compelling stories.

"This place saved me," says Ms. Barnes, a rail-thin woman with large brown eyes. "I was a mess you wouldn't believe. I was sleeping in vacant houses. I was drug-addicted. They dealt with me one-on-one."

Before her rescue, she woke up one day in Johns Hopkins Hospital, covered with abscesses from drug abuse and unable to recall how she got there.

Ms. Barnes was accepted as a client of Project Home through the efforts of a social worker. She now attends a methadone program every day and talks about going back to high school -- 27 years after dropping out.

One of her housemates is a 35-year-old computer operator who was laid off about a year ago in company cutbacks. He subsequently became sick with AIDS and his kidneys failed. His family is unable to help him, he says.

Because he gets dialysis three times a week, he can no longer work full time. Nonetheless, he's looking for a part-time job and hopes to move into his own apartment.

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At the head of this makeshift family is Ms. Lewis. In 1985, the former health care worker heard about a man with acquired immune deficiency syndrome who was left to die in a Baltimore hotel. "Nobody should have to live or die like that," she declares.

Already experienced in working with the elderly and with teen-age mothers, Ms. Lewis made up her mind to be a Project Home provider. Later she formed a nonprofit organization called Magda Inc.; donations enabled her to open two more houses to AIDS patients. She lives with two clients and, with the help of an assistant and a live-in volunteer, cares for six more in the two other homes.

Ms. Lewis' steady stream of clients receive stiff doses of her common sense and love. Between getting people to doctors' appointments and reminding them of substance-abuse meetings, she chides clients about not eating their vegetables, or about watching too many hours on "that idiot box."

Unique needs

Caring for people who enter your home as strangers and often leave it in death is not easy, she says. Each client has unique needs that must be met. Some require special diets, others need special emotional support.

One client, who died this month, depended upon Ms. Lewis for nearly everything in his final days. "I try not to get too attached," she says, yet her eyes fill with tears.

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"You try to detach," she continues. "But you have to be a caring person. A caring, caring person. It's not just providing a house."

The blend of humanity and frugality in Project Home caught the attention of Ford Foundation judges, says Harriet Ruth Woods, president of the National Women's Political Caucus, who served om the judging panel.

"[The program] benefits the person with AIDS who is isolated and needs support. . . .and it saves the state money," Ms. Woods says. "Most of all, when you add it up, it's a better quality of life for AIDS patients."

The Maryland effort may be the only state-funded program in the nation to offer noninstitutional housing to people with AIDS, says Vonita Jones, program manager for C.A.R.E./Project Home. (C.A.R.E. stands for certified adult residential environment.)

Begun 18 years ago to help the mentally handicapped, Project Home was expanded in 1986 to include people with AIDS, Ms. Jones says. It is run by the state Department of Human Resources and serves about 630 mentally handicapped people and 475 AIDS patients. Sixty-five of the AIDS patients have been placed in private residences; the others live in their own homes.

Stay-at-home participants receive whatever assistance they require, from help with housekeeping to medical attention.

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Foster care model

The other part of the program is based on the foster care model: "Care providers" take people with AIDS into their homes and receive $1,034 per client per month. Of that amount, $692 is paid by the state; the rest by the client.

Since clients must have at least two disabling symptoms of AIDS such as debilitating fatigue, many receive either Social Security or disability payments. Most are in the end stages of the disease and don't have much longer to live.

Nursing home care for these clients would cost the state about $1,200 a month per person, Ms. Jones says.

Because of the cost of food, clothing, transportation and other needs of clients such as special diets and disposable diapers, Project Home providers can't make a living from what the program pays them, Ms. Jones says. To prevent anyone from trying, the state requires that each provider have other income. They "are expected to meet their own income needs without counting on the Project Home money," she says.

While no exact figures on housing are available, the shortage of places for people with AIDS is widely recognized.

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Last year, the National Commission on AIDS estimated that up to half of all the Americans who have the fatal illness are homeless. In the Baltimore metropolitan area, there are 2,335 people with AIDS. Statewide, the total is 3,692.

A nonprofit organization called the Housing Unlimited Group (HUG) is developing a 10-year plan for the metropolitan area to provide housing for AIDS patients and people with the human immunodeficiency virus, which causes AIDS. The federally funded plan is scheduled to be finished in November, says Doug Garriott, president of the board at HUG.

Increasingly, people with AIDS have a spectrum of problems that go beyond finding a place to sleep, says Ms. Jones. Those troubles can include drug abuse, time spent in prison, alienation from family or society, joblessness and homelessness.

To smooth any rough edges in the program -- and to make sure that providers keep their end of the bargain -- each client in Project Home has a case manager.

The managers "connect the clients to other support services: substance abuse treatment, support groups, other kinds of mental health counseling," says Maggie Scott, a supervisor for Project Home.

Sometimes the case manager helps forge new bonds with estranged families. More frequently, workers "take the place of family," Ms. Scott says. "One client died in the arms of his case manager. That is the family role, but the family didn't want to take that role, so the case manager was the only one he had left."


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