Two Flew Over the Cuckoo's Nest
olange Lambert and Cosmo Salerno
When Solange Lambert started dating Cosmo Salerno, they scandalized the neighbors. She is now 29, the youngest person in their building, and he is nearly twice her age. Some of the older women had especially unkind things to say about the relationship. "They told Cosmo he was robbing the cradle," Solange recalls, still sounding a little hurt, though all of this happened more than four years ago. "And they called me a tramp."
But their age difference isn't the unlikeliest part of their love story. The two met at Surf Manor, an adult-care home where they, along with most of the other 200 residents, struggle with mental illness: Solange has been diagnosed with bipolar disorder and Cosmo with major depression and anxiety. They fell in love when she first arrived, and they've shared a room for the past three years, one of the few couples living together at the Coney Island home. "We say that's the only good thing about Surf Manor," Solange says, smiling a little. "That we found each other."
"I'd be pretty miserable here without her," Cosmo agrees, looking over at Solange, who beams back at him. Then she glances around the small, dim bedroom they share, and sighs. "We just want to be happy together in a more normal life," she says. "This isn't normal."
Solange is tall, round, and pale. On an overcast day in late February, she sits on an unmade bed with faded green sheets, holding hands with Cosmo, who is heavyset with a graying beard and sad brown eyes. The pair has been waiting for what feels like forever to leave Surf Manor and move into a state-subsidized apartment—as a controversial Federal District Court legal opinion last year supposedly gave them and other mentally ill people in homes like Surf Manor the right to do. But when you're both mentally ill, starting a new life together is far from simple.
Since 2003, they have been in the middle of a huge legal battle between New York State, which supervises privately owned adult homes like Surf Manor, and advocates who say the adult-home system unfairly isolates the mentally ill from society, violating the Americans With Disabilities Act. In 2003, Disability Advocates, Inc. (DAI) brought suit against the state on behalf of New York City adult-home residents. The suit was decided in DAI's favor in 2010, but the state has appealed the decision. If the ruling is upheld, residents wouldn't be forced to move and the homes wouldn't be closed. But all current and future adult-home residents would have to be given the opportunity to move into what's called "supportive housing"—either their own apartments or much smaller group homes. To qualify for the housing, the ruling stated, residents have to meet only three criteria: They can't have severe dementia or require "a high level of skilled nursing" that supportive housing couldn't provide, or be thought likely to cause "imminent danger" to themselves or others. About 4,300 adult-home residents at 28 private facilities in the city stand to be affected by the final outcome.
As it moves forward, the lawsuit has raised a number of uncomfortable issues. Can institutionalized people, some of whom haven't had to take care of basic practical tasks in decades, realistically live independently again? Would a final ruling in favor of supportive housing flood areas of Brooklyn and Queens—where most of the adult homes are concentrated—with mentally ill people? Adult homes have often been criticized for being hellholes, but should they be emptied out? Would that have the same disastrous effect that some experts say was the result of deinstitutionalization of mental patients in the '60s? Would there be a new flood of people who can't cope on their own and wind up living on the streets, unmedicated and unstable? The National Coalition for the Homeless estimates that 20 to 25 percent of single adults who are already homeless suffer from "some form of severe and persistent mental illness."
As both the appeal and the larger debate continue, adult-home residents like Solange and Cosmo who want to try to make it on their own are living in limbo.
For now, their room at Surf Manor smells like hairspray and cigarettes. It's got two double beds and a banged-up wooden bureau crowded with her stuffed animals. Their long, narrow window looks out on the yard and a row of dark, leafless trees newly planted by the home. Cosmo spends most of his time in here, while Solange haunts the Coney Island Public Library branch virtually every hour that it's open. Surf Manor residents only have to let the staff know if they plan to be away for longer than 24 hours, and take their medications with them so they don't miss a dose; otherwise, they're free to come and go as they wish. "I take out like five books a day," Solange says. She opens a dresser drawer and starts pulling out stacks of books she has just borrowed, piling them on the bed: Stephen King, Anne Sexton, Sylvia Plath. She looks up from the stack in front of her. "Reading is my escape."
Cosmo and Solange say that they know they're lucky to have each other, but that lately they are both struggling to keep their spirits up. "I've been putting my hopes on this so much," Solange says of the lawsuit. "Anytime me and him get depressed, I always tell him, 'We're going to be out of here soon.' " She tries to keep Cosmo occupied by writing him elaborate stories on the library computers about an imaginary place called Upper Bear Land, where two little bears named Solange Poo Bear and Cozzy Bear live together. Upper Bear Land is a tale she returns to frequently. "I tell Cosmo, and it cheers him up," she says. But when she talks about the lawsuit, she reaches for a different literary metaphor. "You know what it reminds me of?" she says, laughing ruefully. "You ever read Charles Dickens? You ever read the book Bleak House? It's about a hearing that took like a hundred years and they're all still waiting. I'm calling this Surf Manor Bleak House."
When Solange arrived at surf manor at 25, she had never even heard of an adult home. "I had no idea what that was before I moved in," she says. For her, Surf Manor was the latest stop in a sad, tangled family history, one that she says included childhood sexual abuse by both her grandfather and stepfather and at least five suicide attempts between the ages of 14 and 22. (Solange and Cosmo trace their own pasts in this article; their social worker, Jason Chernikoff, and doctors were either unavailable or couldn't talk about their life histories.)
"I've had a very hard life," Solange says matter-of-factly, adding that sometimes she would try to kill herself by overdosing on a mixture of the medications (including Seroquel, Lithium, Lamictal, and Celexa) that she takes for her bipolar disorder, and other times by slashing her wrists. Before coming to Surf Manor, she says, she had already spent a lot of time in institutions: a year at a residential program for emotionally disturbed teenagers in Orefield, Pennsylvania, called KidsPeace, and four years in Allentown State Hospital. Her last overdose was in 2006, when her grandmother, with whom she'd been living, passed away. This overdose, she says, landed her in a coma; when she recovered, the hospital recommended that she move into Surf Manor.
When Solange moved in, Cosmo was 53 and had been living at the home since 1999, when he suffered a breakdown following the death of his mother. "I always had a normal life," he says sadly, of his years before Surf Manor. "No trouble I was." He says he was diagnosed with major depression and anxiety after his mother's death, which, six months on, became unbearable. Near Christmastime of the year she died, Cosmo says, he stabbed himself twice in the stomach with a bread knife. "I heard Christmas songs, and I was drinking and making a sandwich," he remembers. "I just broke down, being in the apartment all alone." He was hospitalized for the wounds, which weren't life-threatening; when he got out, he was referred to Surf Manor, which is right across Surf Avenue from the Bernard Haber Houses, the city housing project where he'd been living previously. He'd already been through two other relationships at the home by the time Solange arrived. "The second one, she was just all about money," he says. "Solange, she's not like that."
Solange wasn't especially interested in dating anyone when she got to the home. "I remember a lot of the disgusting old men were following me around when I first came here," she says. "One of them grabbed my boobs one time. One of them grabbed my butt. I complained about it, and nothing was done. I used to sit by myself outside a lot of times, because I was lonely."
Cosmo sat outside, too, and soon they began talking. "I realized he was a really nice person," Solange says, grinning at Cosmo. "I didn't want to go out with anybody because in all my other relationships I got abused. The age difference, I thought that wouldn't work. But he's, like, the sweetest guy. I like that he's older. He knows how to treat a lady nice, you know?"
Solange and Cosmo have the same social worker and psychiatrist, both of whom they see once a week. It was the social worker, Jason Chernikoff, who granted the pair permission to move into the same room, Solange says. Then, she adds, he sat her down for an embarrassed chat. "I need to know," she remembers him saying, "are you and Cosmo protecting yourselves?" She reassured him that they were using condoms. "It was kinda awkward," she says, grinning.
But what was awkward for Solange represents for some adult-home supporters a level of familiarity and concern that they argue would be missing from residents' lives if they moved into supportive housing, where they would be much more on their own. In July 2010, 40 families of adult-home residents urged the appellate court to overturn the decision that favored supportive housing, saying in part, "The families respectfully ask this court to consider the disastrous consequences that the lack of an adult home system would have for them and their loved one."
Even Solange, who is frankly miserable in the home, admits that Surf Manor was helpful for her at one time. "I would say it helped me when I came here, because it's a protected environment," she says. "Like when you get here, if you have a lot of mental-health issues, you feel more safe than just being out on your own." But that time is past for her now, she says. "I feel very well, for the past four years. I really feel I don't need to be here."
'An Epidemic of Constipation'
Surf Manor is in a rundown section of Coney Island a few blocks west of the Boardwalk, on a block of Surf Avenue mainly populated by housing projects, bodegas, and the odd storefront church. The home is a squat four-story building surrounded by a low chain-link fence, enclosing a yard filled with scrubby yellow-gray grass and seeded with cigarette butts. Inside, it feels like an odd mixture of a hospital and a shabby hotel—a lobby filled with mismatched chairs and a TV that's always on, a wood-paneled cafeteria with a low ceiling, white-tiled hallways, and sea-foam-green elevators that are constantly breaking down. Most times of day, there are residents standing outside the front door or in the parking lot out back, chain-smoking and watching the traffic pass by.
The front yard, where the staff and residents bustle around one another, is also the prime spot to observe Surf Manor's curious demographics. As with most other adult homes in the city, Surf Manor's operator, Robert Lichtschein—who opened it in 1978—and virtually his entire administrative staff are Orthodox Jewish men. Meanwhile, the aides, "chambermaids" (Surf Manor parlance for housekeepers), and porters are all black or Latina, and predominantly women.
No one seems sure why Orthodox Jewish families run a high percentage of New York City's adult homes, but Jeffrey Sherrin, Surf Manor's attorney, has a few ideas. "They're a population that has, first, traditionally been in health care and social services, and, second, are very community-minded, charitable-minded," he says. "One of the mis-impressions you get is that this is just a group of evil, greedy, money-mongering people. It's just not the case. There's not big money to be made in adult homes."
In 1990, the last time the Commission on Quality of Care and Advocacy for Persons With Disabilities (CQC) studied the revenues of adult homes, they found that New York facilities made an average profit of $2.20 per day for each resident they housed. Only 15 percent of the homes reported losses on their expenditure reports.
Residents have plenty of gripes, and many want to move out. "Many residents will not want to move out, and many will. Neither will necessarily be making the right decision," Lichtschein's son Rafael and the home's head administrator, Josh Teller, wrote to the Voice in response to written questions. "The fear we have is that they will become victims of overstated promises and an aggressively marketed and poorly planned social experiment."
The two strongly defended the operation of the home and contended that "a great many [residents] cannot live independently, if living independently means not having someone available at all times to deal with their problems."
They added, "If residents want to move out, and can do so, we help where we can. Many of those expressions are very unrealistic, not surprising when coming from the disabled population we serve."
Years ago, there weren't enough psychiatric clinics and halfway houses to catch the people emptied from the big asylums. Soon, privately run adult homes began stepping in to fill the void. But by the early '90s, the homes were being accused of many of the same failings as the asylums they replaced: understaffing, poorly qualified workers, and filthy living conditions. A 2002 series in the Times found that many of the homes were little more than "psychiatric flophouses" where residents were being exploited for their Medicare money.
Sherrin strongly criticizes that ballyhooed Times series. "That was the start of the public-relations nightmare for adult homes," he says. "But if you looked carefully at those articles, they weren't describing current conditions anywhere. The inspection reports cited, the pictures taken, the incidents alleged—many of which had been disproved, in one form or another—they were, generally speaking, old. They just weren't representative of where things stood."
The state disagreed. After a subsequent crackdown, Surf Manor and eight other homes were cited by the DOH for serious health and safety violations, including exposed wiring, dirty facilities, and "improper medication management."
The 2010 DOH inspection reports for Surf Manor revealed a number of ongoing issues. Inspectors found in June that at least 30 residents were taking medications at the wrong dosage or for much longer than the period of time for which they had been prescribed, and that at least two residents had been improperly admitted to the home even though they both had serious schizoaffective disorder, which the staff is not qualified to handle. Residents smoking in their rooms, blocked vents, leaky faucets, holes in the walls, peeling paint, mold, "excessive clutter"—the overall picture the reports provide isn't of malicious neglect, but of institution-wide disorganization and decay.
The decay continues. Solange and Cosmo say they recently waited 11 days for the sink in their room to be fixed—in the meantime, they brushed their teeth and drank water from the bathtub. The ceiling of their bathroom has fallen in from water damage several times. And the food, Solange says, "is really bad. A lot of times it makes me like physically nauseous."
"It ain't the best," Cosmo agrees. "I just hate to go into that dining room and eat sometimes." Solange and another resident, Frankie, both say separately that the food they've had in homeless shelters and hospitals was preferable to Surf Manor's. (Owner Lichtschein has been battling health problems, but his son Rafael says, "It's 600 meals a day. People have different wants and needs. It's very hard to make every single person happy." He adds that "everybody enjoyed" Surf Manor's Memorial Day barbecue. In general, Rafael says of his father's operation of Surf Manor, "That's his life—to help out people of different wants, different needs.")
"Sometimes it's like hell in here," a resident named Joseph adds. "But sometimes it ain't that bad."
And sometimes, it's just strange. Like Surf Manor's owners, its resident population is also substantially Jewish, according to Norman Bloomfield, president of the Residents' Council. But he adds that most residents aren't particularly observant and don't keep kosher, which can lead to some friction with the home management. "The number who observe dietary laws—it's maybe four or five, possibly less." He also says the kosher issue becomes especially heated during Passover. "There's an epidemic of constipation here," he says bluntly. "It's one of the main topics of conversation, talking to residents. They blame the matzoh, so much matzoh every day. Residents are being forced to observe these dietary laws, and the majority aren't even religious." He pauses for a long moment. "The whole thing is weird," he says finally.
Orthodox and Unorthodox
On a cold, bright Sunday in early spring, Solange stands smoking outside Surf Manor, adorned with mint-green eye shadow and a long black coat that she pulls close around her to block the wind. Joanne, a resident a little older than Solange, walks by, dressed in a dirt-spotted black hoodie, her brown hair pulled back unevenly with a large white plastic clip. "Pretty makeup," she calls to Solange, who smiles politely. She watches Joanne make her way inside. "Sometimes she loves me and sometimes she hates me," she says in a low voice, turning to make sure the other woman doesn't hear her. "She'll think I'm somebody named Jackie, and she'll yell at me. Then she remembers I'm not, and she tells me how pretty I am."
A lack of friends, she says, has been one of the hardest things about Surf Manor. "I have not one female friend here," she says regretfully. Friendships at an adult home are complicated. "Some people here, they change every day. You'll be talking to them and they're your friend, and then the next day they're like, 'Get away, I hate you.' Or you'll be talking, like a normal conversation, and then it'll just flip, like to outer space or very strange things. It's not their fault, and I feel sorry for them, but you can't have a regular friendship with someone who you don't know one day to the next what they're going to be like."
Solange watches until Joanne is out of sight, then stubs her cigarette out and turns to walk back into the lobby. A Purim party is happening in the rec room, and she doesn't want to be late. She isn't Jewish, but any break from the routine is welcome.
By the time she gets inside, the party is already under way, though it doesn't feel exactly festive. Two very young Chabad Lubavitch men are visiting from Crown Heights; Norman Bloomfield is there and frowns at them. He has been planning his own party and talent show for later, and is a little put out that it is being hijacked by interlopers. "I haven't seen these guys before," he says, although because of Surf Manor's management, Orthodox visitors are a fairly common sight around the home, especially on holidays. The two introduce themselves as Shalom and Yaakov and quickly unroll a megillah, the scroll containing the Book of Esther, which tells the Purim story.
They are surrounded by a semicircle of about 15 residents, mostly elderly, paying varying degrees of attention. One man hears a Hebrew word that sounds like "Australia" to him. "I was in Australia once," he yells toward the visitors. Yaakov looks up, startled. "Sit down and enjoy," Shalom suggests smoothly, raising his voice to make himself heard over a man shouting into a pay phone at the other end of the room. It is just after St. Patrick's Day, and paper shamrocks hang from the ceiling. Coloring-book pages with drawings of leprechauns are taped to the windows, along with a slightly battered-looking paper cutout of a menorah.
Yaakov chants quickly in Hebrew, with Shalom stopping him every few minutes to provide a meandering summary in English. As Yaakov reads, a kind of calm steals over the room. Being read to seems to have an almost narcotizing effect—a few people's eyes start to slide shut. The guy on the pay phone hangs up and quietly takes a seat. A tall young man in a kippah rushes in late, wearing thick, smeared glasses and two backpacks. His tzitzit dangles from under his shirt, and he leads a thin, young man with a high Afro and a long white cane by the hand. They sit down and listen raptly. When the reading ends, Shalom makes a beeline for the young man in the kippah, kneeling down beside his chair. "Are your Jewish needs being taken care of here?" he asks. The young man looks at him hesitantly. "Kind of?" he says.
Solange has been watching all of this unfold from one side, listening politely with her hands folded and her head cocked, looking a little uncertain. As Shalom speaks to the young man, she gets up quietly and opens the back door to the parking lot, where she looks around for Cosmo. He is sitting on a wooden bench just outside the rec-room window, smoking a pipe. She sits down beside him; he cups her face in his hands and gives her a long kiss, then lights a cigarette for her. She leans her head against his and closes her eyes for a moment. Framed by the window, their heads together, they could be anywhere.
Living in Limbo
Like Solange and Cosmo, Surf Manor and the other adult homes exist in a sort of limbo, both because they're businesses, not hospitals, and because their residents are neither profoundly sick nor wholly well. Originally meant to house elderly or disabled people who could no longer live on their own, in the past three decades, adult homes in New York and many other states have largely replaced psychiatric hospitals as primary residences for the moderately mentally ill.
According to one census, there are about 7,200 psychiatric inpatients in New York at any given time, while 28,000 people are living in adult homes. An estimated 40 percent of all adult-home residents have been diagnosed with a psychiatric illness; at Surf Manor, the number is more like 100 percent. In the mid-1990s, the last time a large federal study was conducted, well over a million people in the United States lived in these facilities, about 25,000 of them in New York State.
"An adult home by definition is really not a bad place," says Davin Robinson of the CQC, the state agency that oversees services for the disabled. For some people who will likely always need a lot of help with basic things like taking their medications on time and even just washing their clothes, she says, adult homes are probably the best option for long-term care.
But for others, Robinson says, especially younger people like Solange, adult homes should function more like halfway houses, a stop between the psychiatric hospital and a return to independent living. "[An adult home] isn't meant to support someone to get a job or have any meaningful life in the community," she says. "For a temporary place, it's certainly better than being in the hospital. But it's just that, a temporary stop-gap." For many fragile people with little money or family support, places like Surf Manor become home for much longer than they might prefer. While there's no good data on the average length of stay in an adult home, some residents say they've ended up stranded in these facilities for months, years, and even decades longer than they had intended.
Technically, though, Solange and Cosmo are free to leave whenever they like, notes Matt Schatzel of the state Office of Mental Health, an agency that is one of the defendants in the DAI suit. "Nothing's preventing the adult-home residents from moving out right now if they want to," he says. "That's really their choice."
Attorney Sherrin, who since 1981 has represented Surf Manor and numerous other adult homes, says, "None of the adult homes are against the idea that people should move into the least restrictive setting that's most appropriate and safe for them. But what they do oppose is just taking people out under the theory that anybody living in an adult home who has mental illness would be better off in the community."
State law currently requires adult-home case managers to help residents who want to move out to do so. But that doesn't seem to be happening in many homes, including Surf Manor, says Jota Borgmann, a staff attorney for MFY Legal Services, which provided co-counsel for the disability advocates. "Adult homes are for-profit businesses, for the most part," she says. "So they are trying to make a profit. It's as if I said to my landlord, 'I want to move out, and you need to find me other housing.' What would be my landlord's motivation to do that?"
Most of Surf Manor's revenue comes from the rent residents pay out of their monthly Supplemental Security Income (SSI) checks, which is usual at for-profit homes; Surf Manor also generates additional money by renting a basement office space to New York Psychotherapy, which provides psychiatric services to many of the residents. Solange and Cosmo each receive $1,368 a month from SSI, and pay $1,190 of it—almost 90 percent—back to the home for room and board, the legal amount set for so-called Level 3 care facilities, the designation that covers virtually all adult homes.
They wind up with only $178 each, which isn't even enough to pay for all the other things—medical co-pays, clothing, and toiletries, for example—that the home isn't obligated to cover.
And it certainly isn't enough to save up to move out, Solange adds. "Most regular apartments want you to give a down payment, first month's rent, security," she explains. "We don't have the money to do that at all." At least they have each other.
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