The legacy of deinstitutionalization is that some older people with mental illness can live out their lives at home

From The New York Times:

BALDWIN, N.Y. -- Svetlana Gomelsky, 61, who has schizophrenia, is the beneficiary of one of the quietest, least-heralded social revolutions of her generation.

Starting at about 18, she began hearing voices. “The first time, I thought it was an accident,” she said. “They went away.” She married, had two children, lived in the Long Island suburb of Lawrence and worked as a secretary at a Hebrew school. But eventually the voices returned, growing more intrusive. “I got scared,” she said. “Not only was I hearing voices, I could talk to them. I started to feel God gave me these powers because he had a special plan for me.”

Her husband divorced her; her children, by then young adults, moved out of the house into an apartment. In 1992, she wound up in a psychiatric hospital for six months. “I couldn’t function, I lost my house, all these bad things happened to me,” she said.

But her timing was lucky. By then, New York State had taken notice of all the mentally ill being discharged from hospitals and winding up homeless on the streets, and was paying for the first supervised community residences and apartment programs. Ms. Gomelsky got a place on a quiet suburban street, in a new group home of 10 residents that had 24-hour supervision, oversaw her medications, provided therapy and job training.

In the 18 years since, there have been setbacks, but many more gains. She has moved to a subsidized apartment where a caseworker visits just once a month. She works 20 hours a week as an office clerk. Sweetest of all, three days a week, she’s able to baby-sit her three grandchildren, ages 10, 9 and 2, so her daughter can work.

There is no miracle here. Ms. Gomelsky’s schizophrenia has not gone away, nor have the voices stopped, even with meds. “I do find if I’m busy, I hear them less,” she said. “If they become a problem I speak to my therapist and psychiatrist and they adjust my meds, so I can manage.”

Ms. Gomelsky’s is the first generation with serious mental illness to largely escape the state hospitals. In the 1950s, there were 93,000 long-term patients in New York mental hospitals, some who had lived there for decades. Today there are 4,000.

By 1978, New York had financed just 308 group-home and apartment beds for the mentally ill in the entire state; today, there are about 30,000.

When Marjorie Vezer, 57, executive director of South Shore Association for Independent Living — the nonprofit agency that houses Ms. Gomelsky — opened her first group home in the late 1980s, she said, “we were looking for young people, in the 18 to 35 range.”

She found them. They’ve largely stayed and now, as they gray, they dominate state-financed community housing. In 1999, 56 percent of the state’s group-home and apartment population was in the 41 to 70 age range; today, 72 percent is.

The 18- to 30-year-olds now make up just 11 percent of the state total.

Twenty-five years ago, Ms. Vezer’s group-home counselors kept an eye out for sexual promiscuity issues, drug and alcohol abuse, fighting. Now the added worry is residents’ health: hypertension, heart issues, diabetes, obesity. Ms. Vezer recently hired her agency’s first two nurses.

Between the psychiatric disorders — 70 percent of the 308 people Ms. Vezer houses have schizophrenia — and middle-age problems like high cholesterol, some residents can take 20 pills a day.

One reason more young adults are not entering the housing system is that state funds have failed to keep pace with the need.

The state has not done as well for the mentally ill as it has for the developmentally disabled. Though community beds paid for by the State Office of Mental Retardation and Developmental Disabilities cost two to three times as much as beds for the mentally ill — because of higher supervision levels — New York has financed 7,000 more beds for that population.

We have very different attitudes about the two groups. In the late 1990s, when 26 developmentally disabled adults were found living in homeless shelters in Westchester, there was outrage. Indeed, Gov. George E. Pataki was so embarrassed by the press reports, he created an extra housing program for the developmentally disabled.

There is no similar outrage about homeless shelters being full of people with schizophrenia. Patrick Markee of the Coalition for the Homeless said surveys indicate about half the 7,900 people in New York City’s single-adult shelter system have serious mental illness.

That, of course, is the story we know too well: the ragged people on the corner talking to themselves.

The story we hardly know at all, because it’s hidden from view, is the 30,000 seriously mentally ill New Yorkers like Dennis and Pat Siegel (shown in the photo) who live in quality state-financed housing. Both have schizophrenia, both have been hospitalized for long stretches and both have been homeless.

In the years before the couple met, Mrs. Siegel, 62, worked as a secretary. When her illness flared, she left her parents’ home and lived in her car on Long Island. “I stayed in a parking lot in East Meadow,” she said. “I’d walk to a soup kitchen in Hempstead for lunch — they’d let you take extra rolls, so that was my dinner.” After selling the car, she said, she slept outside. “In Garden City, by the fancy stores, I stayed in a bush.” Asked how long, Mrs. Siegel said, “I didn’t have a calendar, I was day by day.”
The schizophrenia first hit Mr. Siegel, who’s now 60, when he was in his 20s and working as a salesman. After that, he said, he couldn’t hold a job. “I tried, please put that in the article,” he said. “King Kullen, Petland, a Shell station, cleaning.”

He was hospitalized repeatedly and tried killing himself twice. Mostly he lived in illegal rentals. “I stayed in a little house in Elmont,” he said. “There was a different family on each floor, and I was in the basement.”

In 1997, he moved into an apartment run by Ms. Vezer’s agency. He saw a caseworker regularly, and his hospitalizations went way down. “I haven’t been hospitalized in five years,” he said.

That’s a big savings for taxpayers. It costs $250,000 for a year at a state hospital; $30,000 for a month on the psychiatric unit of a community hospital; and $14,500 for a year in the cheery apartment where Mr. Siegel now lives.

He met his future wife at a social club paid for by a mental health agency.

“Dennis said, ‘Here’s my number, give me a call,’ ” Mrs. Siegel said.

“I played it cool,” Mr. Siegel said.

Once a month they went out to dinner. “One day Dennis said to me, ‘Oh my God, do you want to marry me?’ ”

“That’s what I did,” Mr. Siegel said.

She borrowed $200 to buy a dress along with five pizzas, chips and sodas for 20 friends at the boardinghouse where she lived. They were married Dec. 6, 1999, at Long Beach City Hall.

Within a month, the agency found another place for Mr. Siegel’s male roommate, and Mrs. Siegel moved in.

Their apartment is a sunny one-bedroom with lots of windows, on the second floor of a house, along a quiet side street in Valley Stream.

“You can walk to the railroad station,” Mr. Siegel said. “The bus stop’s a block away.”

“Pat keeps it spotless,” he added. “She scrubs the toilets with bleach, the floors. Cooks meals for me.”

“Look at this belly,” Mrs. Siegel said. “He’s gained weight.”

“I don’t really know what else to say, except thanks,” Mr. Siegel said. “What do you like about the place, Pat?”

“Exactly what you said, honey,” Mrs. Siegel said.