Helping consumers add years to their lives, IV: The beginning of the end of institutionalized housing in NYC

This is installment #4 in a series of blogs and articles written to examine the barriers that block persons presumed to have major mental illnesses from living longer and more effective lives. Just to remind those of you who have read any of the previous blogs, I use a model of analysis which can be summarized by the acronym MAP: Mission, i.e., objective and related tasks; Accountability, which, in my model, is first and foremost to the persons being served; and Post-Psychiatry, or, perhaps more accurately, Post-disease model, which relies on psychosocial interventions, with psychoactive medications in an adjunctive and non-central role. More on this in my next blog.

In this blog, I've chosen to take a look at the proprietary or for-profit adult home industry in New York City for several reasons. First, from the time adult homes opened their doors to mental patients newly discharged from State mental hospitals, they have remained essentially unchanged, reminiscent of the hospital back wards from which most of their first residents came.

Second, the homes have never promoted their residents' recovery; rather, they utilize the treatment they do provide, largely psychopharmacological, to secure their residents' acquiescence to barren and authoritarian environments. Finally, New York State, which is constitutionally responsible for the welfare of all State residents determined to have serious mental illnesses, has been recently sued by mental health advocates for failing to ensure appropriate care for all persons with serious mental illnesses currently residing in New York City's adult homes.

Approximately fifty years ago, New York State began to empty out its large mental hospitals, discharging their inmates back to their home communities. The great majority went back to live with their families; but many, particularly older inmates who had been institutionalized for many years, were sent to group homes scattered throughout the state. In New York City, those who didn't go home were discharged to proprietary, i.e., for-profit, adult homes or to SRO's, i.e., single room occupancy hotels.

The adult homes had originally been built, at the State's behest, to house what was anticipated to be a rapidly increasing post-war elderly population that would require independent housing. When this cohort never materialized, the State fulfilled its end of the bargain with the adult home proprietors by filling their homes with mental hospital discharges, a largely one-way flow that has continued over these past fifty years as the State's institutionalized population has dropped from nearly 90,000 to less than 3,000.

At present, 28 homes, licensed by the State Department of Health and located in the farthest reaches of the City, house over 4,000 residents, virtually all of whom have Axis I diagnoses, are poor and receive SSI and Medicaid. From the very outset, the homes were considered by advocates and the residents themselves as re-creations of the State hospitals, warehouses for the recently discharged relocated from the nearby suburbs to the City's neighborhoods. Many of their original residents were the hospitals' "back ward" patients, believed to be irrevocably regressed and cognitively impaired, requiring total care and supervision, suffering, in short, from what Goffman termed "institutionalization syndrome."

Over the years, even as the residents have grown younger and rarely experienced years-long hospitalizations, the same stigmatizing characterizations have been applied to them. Once placed there, residents are expected to live out their lives in the homes, inadequate, presumably, to care for themselves in the larger community, yet crucial, and captive, to the financial survival, and success, of the adult homes. A Brooklyn day hospital patient with a wry sense of humor once referred to the adult home which he had managed to leave as an "elephants' graveyard." I was first introduced to the adult homes in southern Brooklyn in 1976, the first year of my two-year stint as a social worker on the psychiatric in-patient unit at Maimonides CMHC.

One of my principal tasks was to locate placements for those of the patients assigned to me who would not return to their families when discharged. All the adult homes I got to visit were invariably shabby and in need of a paint job. In those homes which did not house psychosocial or treatment units, the residents, rousted out of their rooms for meds and meals, would occupy chairs lining the walls of large assembly hall-like rooms and smoke for hours at a time, a tv set high on the wall out of reach of residents droning in the background. Those few homes with psychosocial units were able to offer their residents in-house activities; but the proprietors, jealous of their prerogatives, closely monitored the psychosocial staff, often supplied by non-profit or State providers, and stifled most advocacy efforts to improve living conditions mounted on behalf of the residents. Twenty years later, when I was directing the FEGS Citywide Case Management Programs, the adult homes hadn't changed much, but the State-licensed community-based housing resources had dramatically increased.

Those of our clients that didn't live with their families now had access to State-sponsored community residences and apartments. This was largely consequent to the untiring efforts of advocates and non-profit providers, who continually pressed the State to provide even more community-based housing. By the early 2000's, the advocates also began to demand that the State address the many shortcomings of the adult homes, including the shoddy conditions, the disinterest in promoting residents' recovery and the denial of residents' civil liberties. The State's response was to locate case management units, administered by non-profit providers, within the homes. The case managers' principal task was to link residents to needed community-based services and resources and, in the process, assess which residents might be interested in moving on to State-funded community housing. In-house advocacy by the case managers to address living conditions, at the proprietors' insistence, remained off the table.

Finally, last year, several advocacy organizations, led by Disability Advocates, Inc., filed suit against the State Office of Mental Health, citing the State's failure to comply with its constitutional responsibility to provide adequate care for persons with serious mental illnesses. The advocates won, the State lost and the presiding judge pronounced a settlement that required the State Office of Mental Health to provide supported apartment housing for all 4000 adult home residents over a four-year period, commencing in 2011. Dutifully, the State complied and issued an RFP, to which a number of New York City non-profit providers responded. The plan put forward by those providers eventually awarded contracts called for hiring peers to assist adult home residents to make the transition from the homes to their own apartments, some single occupancy, others shared, and provide them with additional support until they were settled.

The contracts, of course, would be finalized if and when funds for the project, estimated at $41 million for its first year, were included in the State's budget for FY 2011-12. As in most states this year, the budget process proved controversial and exhausting, with Governor Cuomo determined to comply with his campaign promise to close New York's projected $10 billion budget gap without raising taxes. Happily, the necessary funding was included in both the Governor's budget proposal and that of the Assembly, which is dominated by downstate or New York City Democrats. The State Senate, upstate Republican-controlled, failed to include it in theirs. I can only assume that the adult home proprietors' lobbyists must have been busy. After all, the proprietors' fifty-year old investment was hanging in the balance. If the funding was approved and the project got off the ground, their homes would slowly be emptied out.

The coup de grace, at least for the time being, was delivered by the State Office of Mental Health. While it appeared that the Democrats and Republicans might be able to reconcile their differences by halving the $41 million and assigning that amount to the final budget, SOMH appealed the original decision and secured a stay on the grounds that Disability Advocates and its allies lacked proper standing to bring the suit in the first place. Specifically, no residents had been cited as litigants and parties to the suit. The case is now scheduled to go before the Federal Appeals Court, where it's likely to be thrown out. As per my colleagues at CIAD, the Coalition of Institutionalized and Disabled Adults, which has served as the advocacy organization for adult home residents for many years, the struggle will continue. In the interim, any budget allocations will have to wait until next year. It could be argued that Disability Advocates blew it, made an unfortunate strategic mistake.

For me, however, the SOMH's action was unconscionable. Sure, the State reflexively appeals any legal judgment against it; but at least some of the money to launch this project would have been in the new fiscal year's budget, yet SOMH still went ahead and stopped an initiative long-sought by residents and advocates. To get some idea of how important this is for residents, log on to CIAD's website, www.ciadny.org, click on their YouTube link, and scroll down the right side of that link to "Coco's Story" and "Gary's Story," videos each about ten minutes long where Coco and Gary, CIAD members and former adult home residents, talk about the issue of "choice in housing." So I find myself obliged to ask, what about the State's constitutional mission? What about the State's accountability to adult home residents like Coco and Gary? Or does its long-term relationship with the adult home industry and its proprietors trump all?

The adult homes stand as relics of an unhappy past, best viewed in museums as what has been and should never be again. I'm optimistic that the push to provide adult home residents with the choices they've been asking for will be realized. I recently spent two hours with Geoff Lieberman, CIAD's Executive Director, and JK Canepa, a CIAD organizer, who remain determined, despite the recent setback, to get this done. I assume they are representative of all the other stakeholders (advocates, adult home residents, non-profit housing providers) involved in this struggle. The gold standard for housing programs in New York City for persons caught up in the mental health system is Pathways to Housing, a non-profit founded in 1992 by Dr. Sam Tsemberis.

When Pathways finds a person who needs housing, whatever the reason, they place that person in her/his own apartment (a permanent not transitional living arrangement, for as long as the person wishes to live there) and provide the new tenant with sufficient supports, embodied in an ACT Team. Again, for so long as the person wishes to live there, she/he is never evicted from her/his apartment, no matter whether the person has been re-hospitalized, is treatment non-compliant, has resumed abusing substances, or falls behind in the rent. Pathways and its ACT teams have the person's back, an approach that has proved quite effective --- and is considered a behavioral health best practice. (C.f. www.pathwaystohousing.org ).

Virtually all adult home residents have incorporated the propaganda tossed their way that they are utterly incapable of living on their own. To counteract this mind-set, many of the housing providers and advocacy organizations, among them CIAD, have trained peer advocates to do what Pathway's ACT staff do, i.e., provide as much support as the persons transitioning out of the adult homes into their own apartment will need for as long as they need it. The underlying notion of using peers to do this work is that peers will be able to tap into deep reservoirs of empathy to build with the residents the trusting, collaborative relationships which will be central to their work. I got to see this firsthand when I led several CIAD and NYC Department of Mental Health peer training sessions during the course of the past year. All the trainees were eager, attentive and anxious to do the work for which they were preparing. Many of them would have been hired, I'm sure, to work in the adult home residents housing project stymied, for at least another year, by the State. They, like the hopeful adult home residents, will have to put their aspirations on hold for now. Justice grinds exceedingly, yet inexorably, slowly!

My next blog will attempt a conceptualization of a new, post-disease model of treatment with the ACE (Adverse Childhood Events) study at its core.

Reference: Goffman, Erving, Asylums: Essays on the Social Situation of Mental Patients and Other Inmates, Knopf Doubleday Publishing Group, New York, 1961