March 4, 2010 -- Not since the 1980s, when New York closed many of its psychiatric hospitals, has the fate of New York City's mentally ill been in such debate.
This week, a district court judge in New York ruled that under the Americans with Disabilities Act, all eligible mentally ill people living in adult homes should be offered the chance to move out into their own apartments integrated within the community through a process called "supported living."
The money residents already receive on disability would go to pay rent, rather than adult home fees, and a team of social workers, psychiatrists and other health professionals would visit them.
Though the decision only affects New York, national mental health experts saw possible national implications because the decision was an interpretation of federal law and other large cities follow models similar to New York's for housing the mentally ill.
The ruling was a "dream come true" for one resident of 200-bed adult home in Coney Island, Brooklyn. Indeed, many advocates for the mentally ill hailed the move as a way to improve the lives of people who are stuck for decades, regardless of their level of disability, in complexes that operate like unsupervised nursing homes.
But others saw the ruling as an open door for dumping vulnerable mentally ill people into situations that could lead them to live on the streets, end with them back in psychiatric hospitals or land them in prison.
"The idea of integrating them is a little like motherhood -- you can't argue with that. It's morally sound," said Dr. E. Fuller Torrey, a psychiatrist and Founder of the Treatment Advocacy Center in Arlington, Va. "But it's also unrealistic."
Torrey said he's seen firsthand while caring for his mentally ill sister for a lifetime how much care some need.
"It's dishonest to say that there is no danger of releasing thousands of patients and not paying attention to whether they are on their medication or not," said Torrey, who did not trust that a system of home visits to ensure all patients were taking their medications.
In the wake of the ruling, the state of New York was deciding what to do next, according to a statement by Morgan Hook, a spokesman for New York Gov. David A. Paterson.
"The state is reviewing the ruling ... by the federal District Court, which rejected the state's proposed remedial plan to offer supported housing to individuals with mental illness who reside in certain adult homes in New York City, and is evaluating whether to file an appeal," the statement said.
How the Mentally Ill End Up in Adult Homes
The state is responsible for finding housing for a person who has a psychiatric break, is admitted to a hospital, but then has nowhere to live when they are ready to be released.
"This is typical of the situation of many residents, where it's sort of like a last resort," said Norman Bloomfield, 62, a resident at the adult home Surf Manor in Coney Island. "They have a psychiatric diagnosis, there's no housing for them and they [the state] try to get them out of hospital."
Bloomfield said he felt his adult home was a dumping ground.
"There are people who are very high functioning, or people who are very low functioning -- but you're treated all the same," said Bloomfield, who landed in Surf Manor in 2002 after he was released from a psychiatric hospital.
Unlike a group home, which typically houses no more than a dozen people and offers round-the-clock care, adult homes house hundreds of people and function more like large hotels or dorm rooms.
"This is not a particularly high-needs group of people," said Jennifer Mathis, deputy legal director at the Bazelon Center for Mental Health Law, which co-represented adult home residents like Bloomfield in the lawsuit against the state. "They are not getting very much supervision as it is in the adult homes."
The adult homes in New York City were the subject of a New York Times investigative pieces in the early 2000s that revealed rampant physical violence in the homes, abuse, neglect and even Medicaid schemes in which doctors received payment for unnecessary podiatrist visits or prostate surgery.
Even in the best of adult homes, residents have curfews, roommates, daily medication and receive three meals a day. Some treatment programs are available, but most days, according to residents, are filled with mindless waiting in front of the television or smoking outside.
Technically, adult home residents with mental illness are free to come and go as they please. But advocates say often even mildly-affected patients have no way out because they have no money.
Most people living in adult homes are on supplemental security income (called SSIs) for their mental health disability.
"When you live in an adult home, the adult home gets all of your money but your personal needs allowance -- often $160 a month," said Cliff Zucker, executive director of Disability Advocates, Inc, which was a plaintiff in the lawsuit filed against New York State. Zucker also was a lawyer in the lawsuit.
Living Alone Might Not Be Too Expensive for Mentally Ill
Disability Advocates and the Bazelon Center for Mental Health Law argued that repurposing the SSI money towards rent and handing the rest of the living expenses over to the person with a disability for mental illness actually saved the state money -- about $7,000 out of the $47,946 of state and federal money it takes to house a person in an adult home for a year in New York City.
"It's much less expensive when people are doing things for themselves. But in the adult homes they're doing everything for you," said Mathis.
In September, Judge Nicholas G. Garaufis found that New York had been violating a portion of the Americans with Disabilities Act that decreed people with a disability, which includes mental health disabilities, are entitled to services "in the most integrated setting appropriate."
Adult homes were not an "integrated" setting in the community.
Then in late February, Garaufis ruled that to integrate the system, the state had to create at least 4,500 supported housing units within three years, and create additional units as necessary for new adult home residents who were eligible to move.
"There are about 4,300 people in the homes that we sued on behalf of that would want and would be eligible to move," said Zucker.
Casandra "Coco" Cox, 61, was an adult home resident who got a chance to move into a pilot program of supportive housing.
Cox worked and lived for 29 years in Manhattan before she had a severe episode of depression in 2006. When she got out of New York-Presbyterian Hospital's Payne Whitney psychiatric institution, she had lost her apartment and had no place to live. That's when a social worker referred her to Riverdale Manor in the Bronx.
"I was very disappointed because it's not a pretty place. I wouldn't call it run-down; but it's not a pretty place," said Cox. "The residents themselves, they didn't look happy. They were milling about -- they didn't look like they we e in such great condition."
Cox, along with Bloomfield, became an activist within her home, exposing her to some adult homes in much worse shape than Riverdale.
But it wasn't ideal. One roommate would wake up screaming. Sometimes fights broke out and Cox had to dodge flying chairs. Her valued belongings were stolen, and a second roommate brought in bedbugs.
Cox said she loves living in her own apartment now.
"You feel like a person again," said Cox. "You're an individual. You're back into life again. ... I worked in politics, I was a president of a union in New York City.
"Having done that, it was torture to have to be in an adult home in more or less, held down and not being able to do anything."
Cox said residents at her adult home were not encouraged to work.
"In fact, they're told if they get a job, they'll be thrown out," she said.
Will the Safety Nets For Mentally Ill Be There Forever?
Torrey agreed that there will be some adult residents, such as Cox, who could live on their own. But he thought the decision by the judge overestimated how many like Cox live in adult homes.
"The real problem comes in the fact that the ruling specified that as many as possible should be moved into their own homes," said Torrey. "The problem with that is that we know that roughly 50 percent of people with schizophrenia and 40 percent of people with bipolar disorder are not aware of their illness."
Torrey said this portion of the mentally ill tend to stop taking their medication because they believe they don't need it. Living on their own, Torrey said, a person who goes off their medication can go from harmless to distraught or disturbed.
"I would suggest that it's perfectly appropriate to place these people in the community, but there has to be independent monitoring of their medication whichever situation they are in," said Torrey. "The most recent data would suggest that about 10 percent of the homicides in the United States are committed by people who are bipolar or schizophrenia -- when they are not on medication."
Ron Honberg, director of policy and legal affairs for the National Alliance on Mental Illness, was more hopeful about the decision. Honberg cautioned that people with a history of violence should not be eligible.
But Honberg was most worried that funding for the supported housing program would dry up, much as funding dried up for services in the 1960s, '70s and '80s as states were closing psychiatric hospitals.
"On balance, we feel this is a good decision, but based on history and experience I'd be lying if I'd say we didn't have some reservations too," said Honberg.
"I'm hoping over time those reservations would be proven to be needless, pointless," he said.