By Suzanne Gruer, Former Resident of an Adult Home
The Warehousing of Our Peers Must End
Almost five years ago, I was fortunate to leave the Garden of Eden adult home in which I resided for close to that long. My move from that adult home to the supported housing apartment in which I now reside was a one-time occurrence. Thousands of adult home residents today are less fortunate. They desperately want out. Yet few residents are escaping.
Current adult home residents are desperate to move for the same reasons I was: unsafe and unsanitary living conditions, theft, rancid food, compulsory program attendance, forced and unnecessary medical procedures, punitive hospitalizations, and suffering of all of the above in coerced silence. The owner of Garden of Eden was known for ordering residents to perform tasks for his benefit. Indeed, he once called me to his office to demand that I throw out the remains of his gourmet meal after he dined. Fearing he would hospitalize me if I refused, I complied.
Shortly thereafter, a social worker from the mental health day treatment program I was coerced to attend, in cahoots with a psychiatrist friend, completed an HRA 2010E application for supported housing on my behalf. In less than two months I moved into my airy, sunlit apartment. One month later the social worker lost her job.
Most residents were not as fortunate as I. They had no way out. Adult home owners conspire with day treatment and mental health providers to portray their residents as victims incapable of caring for themselves in a supported apartment milieu. I entered Garden of Eden ready to work so I could move out and rent my own place. Instead of working, I was forced to attend a day treatment program. I sat in that program for close to five years of my life. I now view those years as five wasted years, time I can never get back. Shortly after I moved I obtained employment, proving that I could have worked long before I moved into my apartment.
Frustration has been mounting over the inhumane warehousing of people with mental illness and other disabling conditions for many years. This frustration led to the 1999 Supreme Court decision, Olmstead v. L.C., in which the Court ruled that under Title II of the Americans with Disabilities Act (ADA), individuals with disabilities are entitled to live in communities of their choosing, rather than in institutions, so they can become integrated, fully participating members of their communities.
In 2003, Disability Rights New York (then Disability Advocates Inc. or DAI), the Bazelon Center for Mental Health Law, the Urban Justice Center’s Mental Health Project, MFY Legal Services, New York Lawyers for the Public Interest, and pro bono counsel Paul, Weiss, Rifkind, Wharton & Garrison LLP filed a class-action lawsuit challenging the adult home industry’s illegal warehousing of approximately 4,000 individuals with serious mental illness in New York City. In 2009, they prevailed in a five-week federal court trial. In 2012, the U.S. Court of Appeals for the Second Circuit vacated that ruling on the grounds that the class representative, DAI, did not have standing to represent the class. In other words, the Court stated the class needed to be represented by actual residents living in adult homes.
The case was refiled as O'Toole vs. Cuomo. In 2013, a settlement was reached that required New York State to provide a multi-step, five-year process to transfer potentially over 4,000 adults with mental illness to supported apartments from adult homes.
The first step in this process is “in-reach,” during which housing contractors send representatives into adult homes to ask residents if they want to be assessed. Only about half of the 4,000 class members have expressed a desire to be assessed, largely because of poor “in-reach” and adult home practices that inhibit free discussion, such as lack of privacy to speak with in-reach workers.
Assessment is the second step. Although there are delays at each step, and the State of New York is performing poorly throughout the process, the most significant and alarming delay is at assessment. Because the State has neglected to enforce its contract with Transitional Services for New York, Inc. (TSI), a backlog of over 800 people waiting for assessment has persisted for more than a year. Of the 2,200 adult home residents who have expressed interest in moving to supported housing, approximately 500 residents have actually moved to community apartments over the past three years. A large part of the delay seems to be due to the insufficient staffing of the evaluation team. TSI employs only four people to conduct evaluations of adult home residents who wish to move into apartments in the community.
Both the assessment of a resident and a resident’s Human Resources Administration (HRA) approval (the third step) expire after twelve months. For some residents, there are issues that are never resolved such as assessment discrepancies resulting in either the assessment or the HRA approval timing out. This forces the resident to re-initiate the transition process after they have been expecting to move for at least a year.
The last steps in the transition process are housing contractor referrals and interviews, apartment viewing, apartment selection, moving to an apartment, and coordinating the appropriate services to help each resident to succeed in the community. These steps are conducted poorly as well, with residents often lacking services when they move.
The multistep process is bad. Yet bad has become worse. Over the past two years, more than 1,000 people with serious mental illness have been newly admitted into the impacted adult homes, contrary to the State’s unenforced regulations prohibiting such admissions.
In February 2017, a complex legal situation arose when the State colluded with the adult home industry to challenge the regulations for, and ultimately undo, the settlement.
On March 22nd, the Coalition of Institutionalized Aged and Disabled (CIAD) spoke out in Albany against all this. This group of residents and allies works to advocate for the 5,000 residents trapped in adult homes. Simultaneously, plaintiffs’ counsel took legal action seeking to uphold the settlement.
Recently, in the comfort of my supported apartment, on my own couch, I watched a newsflash about NYC schoolchildren being fed rancid school lunches and the ensuing outrage. For years as an adult home resident I had no couch on which to sit and had to eat the rancid food served. Last night I cooked myself fresh chicken soup because I felt like it, all the while wondering: Where is the outrage concerning how adult home residents are made to suffer; about how I was made to suffer? Adult home residents, for the most part, are not viewed as the people we are; rather, adult home owners see us as objects that are mere conduits for profit. Most others don’t see us at all.
Note: To find the best way to get involved, please contact Geoff Lieberman of CIAD, at (212) 481-7572, or email@example.com