Fighting For Their Freedom: The Ongoing Struggle between New York’s Psychologically Disabled and the Adult Homes They Live In
Thu, Dec 30, 2010
By Brian Park
Coney Island winters can be unforgiving. Gone are the tourists and beachgoers of the summer months. The cold winds, exacerbated in their fury by the Atlantic, bite at exposed skin like an unyielding flurry of tiny whips. The sidewalks are mostly bare.
But there is at least one place in Coney Island where it isn’t hard to find people moving about. Down a barren avenue, past Nathan’s Famous and MCU Park, is where you’ll find Surf Manor. The building’s red brick façade stands out against the general brown, grey and black of its surroundings. Despite its glamorous name, Surf Manor is not some fancy hotel or local hot spot. Surf Manor is an adult home for the psychologically disabled.
Outside its doors, it is common to find a number of residents huddled together against the cold, smoking cigarette after cigarette. With every swing of the door, the smoke penetrates indoors and permeates every level of the four-story building.
“[Smoking] is a routine for a lot the residents here,” said Norman Bloomfield, a resident of Surf Manor. “There aren’t many stimulating activities for the residents to partake in, so if they’re not in the lobby watching television or sitting idly in their rooms, a lot of residents choose to smoke.”
Bloomfield, 63, is one of the nearly 200 residents at Surf Manor, the overwhelming majority of whom suffer from a psychological disability. In New York City, there are 63 adult care facilities in operation, 17 of which can be found in Brooklyn, the second most of any borough, only behind Queens with 23 facilities.
Surf Manor and other like facilities are specifically classified as adult homes—privately owned, for-profit residential facilities whose tenants are largely made up of the psychologically disabled. The medical profiles of New York City’s 4,600 adult home residents span the gamut of diagnoses, but the way in which they find themselves there is often the same.
Bloomfield, who will have lived at Surf Manor for nine years this coming January, was once a college student at New York University’s now defunct Bronx campus. He was and still is a passionate musician, having attended the Julliard Preparatory School. But somewhere along the line, Bloomfield lost his way, and after a three-month stay in the psychiatric ward at Maimonides Medical Center, he was left with no reasonable option except Surf Manor.
“I didn’t have much choice at the time,” said Bloomfield. “The choice is basically going to a shelter and being homeless or going to an adult home.”
Over the years, there has been plenty that’s been said and written of the abject conditions of New York City’s adult homes. The most notable and often cited of these works is the three-part, 2002 Pulitzer Prize-winning investigative report by the New York Times’ Clifford Levy entitled “Broken Homes.” Through his own investigation, Levy discovered that adult home residents were not only living in modern day squalor but that state and city regulatory groups were doing little to nothing to address the issues and to reprimand adult home operators.
“Whether it’s something as small and criminal as this dump we’re living in or something as sinister and large as the government, people don’t like the truth being told about them,” said John Glusenkamp, another resident of Surf Manor. “Especially when they’re doing bad things.”
But while improving current conditions in adult homes is still an issue, the controversy has shifted considerably in recent years. Since 2003, New York City’s adult home residents and their advocates have been deadlocked in a legal battle with the state over contested discriminatory practices.
At the heart of the issue is freedom. Adult home residents contend that they have very little choice in where they stay, how they live and whether or not they can advance beyond their lives in adult homes. They argue that the New York State Department of Health (DOH) and the state Office of Mental Health (OMH), the two governing bodies that oversee adult homes, have done little to alleviate their current situations and that they are reluctant to offer alternatives.
A victory for residents like Bloomfield and Glusenkamp would signal the most dramatic shift in care for the psychologically disabled since the deinstitutionalization movement of the 1970’s.
The More Things Change, The More They Stay The Same
The proliferation of adult homes came on the heels of the deinstitutionalization movement that began in the 1950’s, continued into the 70’s and to a lesser degree, in the 80’s.
The changes began under the Kennedy administration in 1963 when the United States Congress passed the Community Mental Health Act to provide federal funding for community-based mental health centers. Although President Kennedy’s belief—that “an ounce of prevention is worth more than a pound of care”—is viewed by modern experts as slightly misguided, the government’s growing interest in mental health signaled a shift in public perception of the mentally ill and the large institutions they are often sent to.
“In the 60’s, 70’s and even in the 80’s, if you were diagnosed as schizophrenic, there’s this huge negative perception,” said Glenn Liebman, chief executive officer of the Mental Health Association in New York State. “There’s no way conditions should be like that. There’s no excuse.”
As the poor conditions and ghastly treatment in large institutions came to light, the mentally disabled needed new places to go. Unfortunately, while fewer people with mental disabilities were being sent to psychiatric institutions, there was not yet a uniform system in place for these individuals to live in, receive treatment and rehabilitate.
Soon enough, adult care facilities began to spring up all across the country. These for-profit homes, shrouded by good intentions, were widely accepted by state officials as a relief from the growing number of psychologically disabled persons who were now homeless on the streets or in the prison system.
Unfortunately, adult homes have now become modern day versions of the large institutions America once tried to do away with. Residents are provided room and board but little else. In New York, the DOH and OMH have often promised change but it has come in small, unnoticeable increments.
“There are broad based regulations in place but the reality is, you can regulate forever but you have to change the mindset and direction of both the operators and the residents,” said Liebman. “A lot of residents of the homes have gone straight from a psychiatric center to an adult home. They’ve been run down by the system.”
Adult home residents and their advocates are now fighting for two things: freedom in and from adult homes, and new supported housing that provides a better opportunity to live a normal life. Naturally, adult home operators and state government, motivated by lost income and increased expenses, respectively, have fought against this change.
Trapped In The System
When the psychologically disabled are deemed well enough to leave psychiatric wards or institutions, their choices are often limited to surviving homeless or living in an adult home. Social workers arrange admissions interviews between the psychologically disabled and adult home operators. Once approved, these reluctant tenants sign a lease or an agreement to pay a monthly rent for room and board.
However, most adult home residents do not have jobs. Instead, they receive their income from monthly Supplemental Security Income (SSI) or Supplemental Security Disability (SSD) checks. Furthermore, when an individual signs an agreement with an adult home operator, the monthly state-regulated cost for room and board is roughly 87 percent of a resident’s SSI or SSD check. Adult home operators receive the residents’ checks directly from the government and the remaining amount—between $178 to $198 a month or roughly six dollars per day—is dispersed as “personal needs allowances.”
Included in room and board are three daily meals. As such, despite the poor quality of food and their meager allowances, adult home residents are not eligible for government food stamps.
“If residents can’t stomach the food in the dining room, then they have to use up some of their own money to buy [expensive] outside food,” said Bloomfield. “What you have are a lot of residents desperate for money, especially near the end of the month. A few residents will be begging out on the street.”
Residents have the option of filing formal complaints against adult home operators to the DOH but their concerns often fall on deaf ears. Prior to his current stay at Surf Manor, Glusenkamp was a five-and-a-half-year resident at Garden of Eden Home in Bensonhurst. “A very bad joke,” said Glusenkamp. “It was no garden and sure as hell ain’t Eden.”
Said Glusenkamp, “I should have known if you can’t get something corrected in five years of telephone calls and seeing politicians, then it’s like going to Las Vegas and trying to win. The deck of cards is stacked against you. You cannot beat the house.”
Adult homes are not places of treatment and rehabilitation. While residents do receive daily medication, there is not a system in place in New York City’s adult homes to re-acclimate the psychologically disabled back into society. Residents and advocates also say that while they can freely leave adult homes, operators discreetly discourage this through retaliatory threats such as hospitalization.
New York State does have alternative housing options available but until recently, none of those beds were earmarked for the psychologically disabled. These alternative housing options, or government subsidized, supported living apartments, offer far more freedom than do adult homes. While more money is taken out of SSI and SSD checks, residents in supported living apartments own their own rooms, have more personal spending cash and have the opportunity to integrate within their communities.
That is the focal point of the current legal battle between adult home residents and advocates versus the state. Adult home operators do not want to lose their monthly allotments and the state is reluctant to spend more money to place residents in these supported living arrangements. On the other side of the argument, advocates argue that adult homes, like racially segregated schools of the past, are a violation of an individual’s rights and freedoms. Adult home residents just want a chance to make more of their lives, they say.
The Legal Battle
In 2003, Disability Advocates, Inc. (DAI), a legal advocacy group based in Albany, filed a lawsuit on behalf of adult home residents against then-Governor George Pataki, the DOH and the OMH.
The adult home residents represented in the case were from 28 adult care facilities in New York City that are classified as “impacted.” That is, an impacted home is one that houses at least 120 residents of which at least 25 percent suffer from a mental illness.
DAI alleged that the state, DOH and OMH violated the rights of the psychologically disabled as set forth by Americans with Disabilities Act (ADA) of 1990 and the Rehabilitation Act of 1973. DAI justified such allegations with the landmark decision Olmstead v. L.C. in which the U.S. Supreme Court stated that the “provisions of the ADA and Rehabilitation Act are violated when a state places people with mental illness in ‘unjustified isolation,’ and that a person with mental illness may sue the state for failing to place him or her ‘in the most integrated setting appropriate to [his or her] needs.’”
In September 2009, Judge Nicholas G. Garaufis found in favor of DAI and adult home residents. Later in March 2010, Garaufis offered a remedial plan based on DAI’s proposal that called for the state to develop 1,500 new supported housing units each year for the next three years. But instead of complying with Garaufis’ decision, the state appealed the decision and the case is yet ongoing.
“It’s really about people’s rights under the ADA to not be forced to live with deficient services,” said Cliff Zucker, executive director of DAI. “The state provides services but it insists that residents rely on institutions forever as a condition of getting these services. Supported housing offers a better alternative but the state has denied adult home residents of this.”
From Adult Homes to Supported Living
Following the New York Times’ investigative piece on adult homes, the initial reaction caused the formation of an adult home workgroup whose goal was to improve the lives of adult home residents.
The workgroup’s investigation found that at least 50 percent of all adult home resident were eligible for integrated housing communities, much like the supported units the state is currently fighting against.
“Levy’s work really exposed a lot of wrongdoing on the part of the state and forced them to respond,” said Geoff Lieberman, executive director of the Coalition of Institutionalized Aged and Disabled (CIAD). “But the state and the DOH and the OMH have done very little in response.”
Zucker agrees with the sentiment and said that while Levy’s work was important, its success in influencing change was “limited.” Part of that limited success, however, is a clear indicator that supported housing may be a more viable option for current adult home residents.
One of the small victories to come after the workgroup was the introduction of 60 supported living units for a few adult home residents. Phil Shapiro was one of the fortunate 60 adult home residents who applied and received supported housing. He currently lives in an apartment in Midwood.
“There’s no regimentation,” said Shapiro. “When I take my medication I take it immediately before I retire. Whereas in the home, you would get it between 8:00 and 9:30 and it would make some people woozy for an hour or two.”
“You go shopping and you buy your own food,” added Shapiro. Compared to his former life at Kings Adult Care Center in Brooklyn, Shapiro said that he considers himself “lucky” to be out of an adult home because of the freedom he is offered to live a normal life. Said Shapiro, “I feel great. I’m on my own. I make my own decisions.”