After 10 Painful Years of Lawsuits, Some Mentally Ill New Yorkers Finally Have a Chance to Live On Their Own
Two years ago, we told you about Solange Lambert and Cosmo Salerno, a happy couple unhappily living in a place called Surf Manor. Surf Manor is an adult home, a sort of halfway house for mentally ill people, state-funded but privately owned and operated. Soon after arriving at Surf, Solange and Cosmo both found that adult homes, for a whole host of reasons, are the Hotel California of housing: It's very easy to land in one, but almost impossible to leave.
Photo by Emily Berl Solange in 2011
- Two Flew Over the Cuckoo's Nest
On Tuesday, in big news that didn't get nearly enough coverage, the governor's office signed an agreement that will allow adult home residents the chance to live on their own, something they've been begging for since 2003. So what the hell took so long?
The delay is actually pretty easily explained: Lawyering and resistance from previous governors ate up the last 10 years. In the meantime, mentally ill adults who wanted to try living independently were left stranded.
A little backstory: About 4,000 mentally ill New Yorkers live in adult homes, a curious amalgam between a hotel and a not-quite-nursing home. They're not medical facilities, and people with serious mental illness, or those who need intensive nursing care, aren't qualified to live there, although adult homes do have social workers on staff and access to some supportive services. There are dozens of adult homes throughout the city, most of them situated in Brooklyn and Queens (and for reasons that aren't quite clear, nearly all of them are run by Orthodox Jewish operators). The homes are overseen by New York state; residents pay room and board out of their SSI checks. It's legal for the operators to take 80 or 90 percent of their residents' monthly check money, and many of them do just that.
Most people land in adult homes after brief stays in short-term "acute care" settings, like emergency rooms and psych wards. Solange, for example, attempted suicide in 2006, when she was 25, after her beloved grandmother died. She fell briefly into a coma; when she recovered, the hospital recommended she move into Surf Manor. She had no idea what an adult home was, or that she'd soon be giving up so much of her monthly income that she'd have virtually no way to save up enough money to move. And after four years at Surf, she felt fully recovered and ready to leave, but saw no way to do so.
In 2003, a nonprofit called Disability Advocates (now called Disability Rights New York), sued New York state, claiming that the adult home residents were being "warehoused" and kept in inappropriate isolation from the rest of the world, something that's prohibited by the Americans with Disabilities Act. The homes were already taking a lot of heat, thanks to a 2002 New York Times series by Clifford Levy, "Broken Homes," that exposed brutal squalor, neglect, and abuse in some of them.
The same year, a panel convened by the state recommended that adult home residents who wanted to move be offered a chance to move do so. It suggested the state create a pathway into supportive housing: state-subsidized apartments where the residents would still have access to social services.
"The Pataki administration rejected that recommendation," says Cliff Zucker. He's the executive director Disability Rights New York, and he's been involved in this suit from the beginning. Instead, he says, "they tried to make the homes better institutions. That was the focus of the state's reform efforts ten years go." It didn't go well. "These are hard places to improve," he says. The Spitzer and Patterson administrations, too, weren't particularly interested in helping adult home residents move.
Three years ago, a judge ruled that the residents were indeed being kept in an inappropriately restrictive setting. He ordered that the people who wanted to move out be offered a pathway to supportive housing. But an appeals court quickly struck down his ruling, saying Disability Advocates never had the right to sue in the first place. It looked like the lawsuit would have to start over from the beginning.
A year ago, in desperation, representatives from Disability Rights New York went to the Department of Justice. They quietly entered into talks with the DOJ, the state, and attorneys representing individual adult home residents. Over the past few months, they hammered out an agreement to give the residents a chance to leave. It helped, Zucker says, that Cuomo's administration "realized the residents had a point. ... Governor Cuomo and his people saw the light."
So what happens now? "If people are qualified to move--which means they wouldn't be dangerous to themselves or others if they moved, or have serious dementia, or need a nursing home--that they will offer them an opportunity to live in supportive housing and get the services they need," Zucker says. The rent is subsidized, and so are their moving costs. The apartments are located in buildings throughout the city; no more than two or three former adult home residents will move to one building, to prevent another "warehousing" situation. The state has committed to creating at least 2,000 supportive housing units.
But the adult home operators are running a business. They have no financial incentive to help their residents move out, and Zucker expects that they won't be particularly happy with the agreement.
"I'm sure the operators are not thrilled with this," Zucker says. "But they don't have titles to these people. These people are free. And we believe the vast majority of them, once they understand what's being offered, will choose to live in the community." And just to make sure the operators play by the rules, a court evaluator will oversee the process, as will the DOJ.
Adult home operators are also a politically powerful group. "The operators have a lot of political capital," Zucker says, with two main associations and lots of lobbyists. "There's going to be push-back," he adds. "The administration will get push-back too. I don't know if courageous is the right word, but this took guts. They're doing the right thing. We're very happy they made this decision."
I've sporadically kept in contact with Solange over the past two years. Yesterday, I reached out to her on Facebook to see if she'd heard about the agreement. She's still living in Surf Manor, and still eager to move.
"I've heard about the decision," she replied, "But it doesn't apply to me." Solange and Cosmo have broken up, and she and her new partner, who doesn't live at Surf Manor, are expecting a baby boy in August. She was told--by who, she didn't say--that her pregnancy made her ineligible for supportive housing. That's not true, according to Zucker.
In either case, Solange's need to leave Surf Manor has suddenly become urgent. It's many things, but it's no place for a baby.