What happens now?
This is a major triumph for the advocates and for Cliff Zucker, lead attorney at Disabilities Advocates, Inc. of Albany, which brought the landmark suit that now has supporters begging the governor not to appeal the decision. We refer to the ruling in September in which Judge Nicholas Garaufis of the federal district court in Brooklyn ordered NYS Governor David Paterson and commissioners of the State Health Dept and Office of Mental Health to find more suitable, integrated housing in the community for some 4,300 mentally ill residents of adult homes in NYC. The decision applies only to those larger, named adult homes that have at least 25 percent of residents with mental illness, called “impacted” homes. Many patients were placed there by the NY State Office of Mental Health as it emptied out its state psychiatric hospitals starting in the 1970s. While the ruling doesn't apply to homes other than those in the suit, it is seen to have wider implications.
According to the court document, these facilities which house former psychiatric hospital patients lack the staff and resources to provide integrated housing and services to promote community living. The court concluded that virtually all of the constituents are qualified to receive services in supported housing, “a far more integrated setting in which individuals with mental illness live in apartments scattered throughout the community and receive flexible support services as needed.”
The ruling says that the people in these homes should have access to all the services and opportunities of others living in the community and they do not do so now. The adult home prevents them from living in the most integrated setting possible, which is a violation of the Americans with Disabilities Act and the US Supreme Court decision in the “most integrated setting” case. The judge called the residents “psychological prisoners of the homes-- rarely going out for a meal, a walk in the park, going through a charade of rehabilitation, being herded into lines to take their medicine.”
Mr. Zucker, who heads Disabilities Advocates, a federally sponsored protection and advocacy law firm that has taken other class action suits on behalf of the mentally ill, filed the suit in 2003. While we commend him and the victory in this case, one wonders if the judge got it right. First, we notice the difference in the age group—residents in these adult homes are mostly over 60, while those placed in supported housing in our communities are more apt to be young people 18 and over, but seldom 60. Second, people who live in adult homes are in need of daily support services like showering and dressing, they get medication assistance, often get transportation to appointments and they eat meals in a common dining room. They must be ambulatory and continent when they enter the home even if some of them become incontinent once there. Some use a walker.
In contrast, residents in state-supported apartments may only have a case worker visit them once a month to check on them. They're on their own for meals and getting around. People wouldn't be placed in these apartments if they're incontinent or non-ambulatory. So how can the judge glibly find that these residents of adult homes can easily move into the lightly supervised apartments? The fact is, the alternate places don't exist at all—demand has exceeded supply for years and the state has tightened the apartments allotted to the counties. Schenectady County was only given six units this year and fewer in the last few years, with a far higher waiting list.
The non-profit housing sponsors won't even take the money to open new supported housing in counties north of NYC, with exceptions, because the stipend is so small and rents have climbed out of sight. So the housing companies have actually not renewed some apartments and frozen out their tenants. Could that happen to residents out of adult homes? Remaining state-backed housing for the mentally ill--licensed group homes and treatment apartments, are few and far between. The state would need a whole new housing regime to go ahead with more of them. So any newcomers will find a long wait even if the state makes a much greater investment in its housing opportunities.
Besides the shortage, some of us have continuing doubts about the judge's ruling. Families quoted in the NY Times Oct. 8 gave mixed feelings and some had fears that life on the outside for residents might prove difficult or even dangerous. The Times article says relatives are in a quandary because they have little or no power to dictate where they belong. They are not considered dangerous to themselves or others and are legally independent adults. The families do not support the homes, however. One of those quoted is Florence Weil, who as a NAMI member on Long Island has advocated for years for stricter state standards for the homes. She visited them, inspected records and testified before legislative committees. Little was changed in the face of the powerful adult home lobbies. And back in 2002, the homes received a scathing report in articles by Cliff Levy of the NY Times. The articles pointed to chaos in the sprawling homes in NYC, telling how those living in the worst homes were abused and neglected and f'orced to take medical treatments they didn't need.
Meanwhile, in an op-ed in the NY Post, E. Fuller Torrey, a well-known advocate for the mentally ill, calls the judge's decision “well-intentioned (but) will ultimately mean disaster for New Yorkers.” Torrey sees large numbers of untreated ex-adult home patients roaming the streets, winding up in shelters and jails. He blames the state Office of Mental Health for shifting state mental patients from hospitals to the adult homes starting in the 1970s. “What Judge Garaufis should do,” Torrey argues, “is to order the state to clean up the adult homes, limit their size, and set up a program of unannounced inspections by an independent state agency. Instead, he threw residents out on the street.”
Judge Garaufis hasn't ruled as of Oct. 20 on a specific plan to remove the residents or whether the homes can admit more mental patients. NYS OMH is said to be evaluating its options. While most of us would find closing the worst homes a godsend, the questions are how will these frail and elderly residents fare in the move outside the walls and will the state follow through in such precarious economic times. (Roy Neville)