If you log onto the website of the New York State Office of Mental Health at www.omh.ny.gov, you’ll find out that less than three thousand individuals are hospitalized at any one time in the State’s ancient state mental hospitals, euphemistically known for the past thirty or so years as psychiatric centers. Not bad for a state that institutionalized close to one hundred thousand presumed mentally ill persons over fifty years ago. What you wouldn’t find out is that the State maintains a shadow system of institutionalized housing and has since it began to empty out its hospitals. The State doesn’t operate these “adult” homes, which probably helps contribute to the fiction that they’re not integral to the State’s system of care for persons labeled as seriously mentally ill. They’re all proprietary or privately owned and run, although overseen, fiscally and operationally, by the State’s Department of Health. There are reportedly 453 adult homes state-wide housing 28,000 persons, 11,000 of whom are presumed to have serious mental illnesses; fifty-two of those homes are in New York City and house an estimated 9,000 individuals, approximately half of whom are presumed to be seriously mentally ill (from www.ciadny.org).
This is a story about CIAD – the Coalition of Institutionalized Aged and Disabled – and its decade-long struggle to help its members get out the soul-deadening adult homes in New York City where many have been trapped for far longer than the past ten years. Actually, CIAD began its struggle to represent residents in City adult homes in 1973, when it was founded by residents and supporters with the aim of improving living conditions in the homes. Despite shoestring budgets, it has managed to survive into the present; is recognized by the State Department of Health as the bona fide spokesperson for New York City adult home residents; and has earned the very grudging acceptance of adult home proprietors. At present, CIAD is overseen by a 12-person board of directors equally comprised of residents and non-residents. It’s been administered for years by a very dedicated executive director, Jeff Goldberg; staffed by one full-time organizer, JK Canepa, complemented by several part-time organizers who are former adult home residents – Gary Levin and Coco Cox – and the several stalwarts who make up CIAD’s Policy Committee. To give you a more personalized picture of these folks, Jeff raises funds for the organization every year by running in New York City’s annual half-marathon. Fortunately for CIAD, he’s in good enough shape to do that. JK is indefatigable and volunteers what extra time she has to the nationwide anti-fracking campaign. And Gary and Coco tell their stories on CIAD’s website – both individuals with interesting life histories who found themselves unable to escape their adult homes until public pressure obliged the State Office of Mental Health to make “supported” apartments available to them.
The “public pressure” emanated from Clifford Levy’s Pulitzer-prize-winning series of articles on New York City’s adult homes published in 2002 by The New York Times documenting the “abuse of mentally ill residents” in adult homes. In short order, the State Office of Mental Health situated supportive case management programs in twelve of the so-called most heavily “impacted” adult homes – i.e., homes whose populations of presumed mentally ill residents exceeded 25% of their capacity – to promote residents “community integration”; and it made available to interested adult home residents 30-40 “supported” apartments, i.e., market-rate apartments that were State-subsidized – Gary and Coco were among the first to avail themselves of this opportunity. Lastly, and the occasion for this article, the Times expose’ prompted Disability Advocates, Inc., the agency contracted by the State to protect the interests of persons labeled as seriously mentally ill, to file a lawsuit in 2003 against the State, alleging “violation of the [community] integration mandate of the Americans with Disabilities Act ….”
As Saul Alinsky would contend, CIAD and its members had gained the “moral high ground” in its years-long struggle with the State to improve the lives of adult home residents. In the process, they attracted to their cause an impressive lineup of friends and allies: in addition to DAI, Mobilization for Youth (MFY) Legal Services; NY Lawyers for the Public Interest; the Urban Justice Center; Bazelon Center for Mental Health Law; the Mental Health Association of New York State (MHANYS); New York Association of Psychiatric Rehabilitation Services (NYAPRS); the Schuyler Center for Advocacy and Analysis; the Association for Community Living; and virtually every non-profit mental health housing agency in the City. I’ve taken the trouble to list CIAD’s allies to demonstrate the depth of the support its campaign has garnered: the State advocacy and provider community arrayed against the State of New York, determined to end the 50 years-old practice of warehousing folks presumed to have serious mental illnesses. If you should ever walk into any one of these homes, you’d be taking a trip back in time … confronted as you walked in by a large day room/lobby with rows of chairs filled by blank-faced individuals looking and not at a television suspended high up on a wall … a virtual replication of the “… Cuckoo’s Nest” dayroom, except that folks would be wearing their own clothes rather than flimsy green cotton robes over flimsier white cotton gowns.
Both sides presented their cases pro and con over the next six years in New York’s Federal District Court; and, in 2009, Judge Nicholas Garaufis found in favor of the plaintiffs, rendering a potentially far-reaching decision:
• All current and future adult home residents, if qualified, i.e., diagnosed with serious mental illnesses and assessed to be capable to care for themselves, will be offered placement in supported housing, should they so desire;
• The State is required to ensure that opportunity for all current and future residents within four years of the District Court’s order;
• And a court-appointed monitor will be named to oversee the State’s compliance with the order.
Sounded good, but the drama had only begun. Litigation is a good tool to promote social change but rarely ensures it. The State shortly appealed on the grounds that DAI did not meet “the constitutional requirements for associational standing”, i.e., was a State contractor and did not have a formal membership constituency, and therefore could not represent adult home residents as claimants in a class action suit. Pending the appeal’s outcome, a stay of the Federal Court remedy was issued by the Federal Court of Appeals in February, 2011. You should know that the State of New York – actually, all levels of government – appeal adverse court decisions as a matter of course. They also routinely attempt to block or delay any change in governmental policy or procedure that they did not initiate. For example, only recently, in 2008, the SHU Exclusion Law was passed by the New State legislature – SHU is the acronym for Special Housing Unit, the euphemistic term used in most prisons for solitary confinement — after years-long pressure from advocacy groups. Its objective was to halt the NY state prison practice of confining in the SHU inmates who were evidencing psychotic symptoms; which, in turn, appeared linked to a surge in suicides by prison inmates. It only became law in July, 2011, when, over Governor Patterson’s objections, operational funding for the law was finally included in the State budget.
In the case of the adult homes, you have to remember that the original ruling,
if allowed to stand, would affect the 6,500 other folks diagnosed as having serious mental illnesses who live in adult homes outside of New York City. And what about the additional 17,000 adult home residents throughout the State who presumably do not have serious mental illnesses? Do any of them have any disabilities? A veritable Pandora’s box. You might know that the U.S. Department of Justice is currently pursuing “Olmstead” lawsuits – after the 1999 Supreme Court decision that upheld the integration or “least restrictive environment” provision of the ADA – against at least six states. DOJ even briefly joined the DAI lawsuit against New York in 2009 to buttress DAI’s legal standing to bring the case, but was removed as a litigant by the Court of Appeals which ruled that DOJ’s involvement came too late, or long after the judicial process had begun. Needless to say, the State would reflexively block or delay any initiative with such far-reaching potential consequences.
In addition, the State has a fifty-year long relationship with adult home proprietors, most of whom are represented by the NY Coalition for Quality Assisted Living. At the behest of the State, as deinstitutionalization was dawning, proprietary or for-profit entities began to construct adult homes to house the expected influx of elderly inmates from the State hospitals being emptied out. The single largest patient group in State hospitals at that time were older folks suffering from dementia-related illnesses; but when they wound up being placed in nursing homes, individuals believed to have serious mental illnesses were sent to fill the adult homes’ empty beds. So the State owes the homes’ proprietors big time – and vice versa; indeed, CIAD observers who witnessed the Federal District’s trial’s proceedings reported that a mid-level official from the State Office of Mental Health issued a public promise to the proprietors during his testimony that their beds, regardless of the final outcome, would never be empty. And then there’s the view, held in common by government officials, legislators, the adult home proprietors and many providers, of the adult home residents themselves: when they see them or think of them, they see “… Cuckoo’s Nest” … a bunch of poor, bedraggled, weird-visaged individuals who look out of place in the world. So where else do adult home residents belong but in an institutionalized setting where all decisions about their lives are made by their caretakers? It’s not so easy to change a perspective honed by one hundred and fifty years of history.
Unfortunately, that’s also the self-image which many of the residents hold of themselves. When you’ve been told for years and years that you’re dumb, crazy and incompetent, it’s hard not to think otherwise. Yet, when you meet residents at their residents’ councils meetings, or at CIAD’s policy committee meetings, or when you’ve had the opportunity, as I had just last month, to travel with them to Albany on their annual Legislative Speak-Out, you find folks who have a solid sense of themselves and their mission. We numbered 25-30 persons, more than three quarters of whom were residents; fully one-third of the latter group needed wheelchairs or those walker/seat wheeled combos to get around. And getting around meant covering fairly long distances, from our meeting place in a modern/grotesque edifice erected by Nelson Rockefeller called “The Egg” at least half a mile via a subterranean concourse to the ornate and now restored Victorian State Capitol building , where most legislators’ offices are to be found. Appointments had been made for us to meet with the pertinent staff members of five key Senate and Assembly Committee Chairpersons, as well as with James Introne, Governor Cuomo’s Deputy Secretary for Health. We told our stories and pushed our issue, which was to have budgetary legislation passed that included at least some of the $45 million for supported housing over a three-year period the Governor had proposed in his budget message to the Legislature.
At the end of March, when the State budget for FY 2013 was passed, we found out that our efforts and those of other advocates had contributed to the inclusion in the budget of $16.8 million for supported housing and related expenditures – assessments, training, in-reach to residents, care coordination and the court-appointed monitor. The money was included in the event of the restoration of the Court-ordered remedy to enable adult home residents to move into their own apartments; but, since it was in the State’s budget, it could also be used for the very same purpose without a Court order, i.e., whether the State’s appeal of the Federal District Court’s original ruling was upheld or not. In short, it appeared that Governor Cuomo might actually be a man of his word: in his State of the State message delivered on January 4, 2012, he had proposed that the State “develop an Olmstead Implementation Plan that will guide the transition of individuals from institutional to community-based care …”
The proof, of course, will be in the pudding. On April 6, the Federal Court of Appeals vacated Judge Garaufis’s original order, upholding the State’s appeal, on the anticipated grounds that DAI lacked sufficient standing to bring the case. Significantly, the Appeals Court did not overturn Garaufis’s findings, i.e., that the adult homes were institutionalized settings and the State’s use of them to house persons presumed to be seriously mentally ill constituted a breach of the community integration requirement posited in the ADA. The question before CIAD and its members, DAI, DOJ and the several advocacy organizations supporting their efforts is what to do next. DOJ, according to Cliff Zucker, Director of DAI, has the option of filing a new lawsuit. Zucker, himself, stated his preference for reaching a settlement with the State. I’m not a lawyer, but, if the first lawsuit took nine years to complete, how long might a second take? And the money, lest we forget, is in the pot.
So the question now becomes how best to persuade the State that a negotiated settlement is in everyone’s best interest.
Saul Alinsky – and I, for that matter — would tell CIAD and its allies to keep the pressure on the State from the moral high ground they occupy. Unless the State is made to feel a sense of obligation, that $16 million can be diverted to other purposes. And don’t forget the State’s already existing sense of obligation to the adult home proprietors. When you’ve been sleeping in the same bed for fifty years, change comes hard. CIAD, et al’s message to the State should be … “Do the right thing! Negotiate an agreement with Disability Advocates, Inc., that will begin to dismantle what’s left of your institutionalized and dehumanizing system of care and that will enable adult home residents to move into community-based supported apartments and reclaim their community citizenship. Take the first and necessary steps to create and begin implementing the Olmstead Plan that Governor Cuomo has proposed. The money to do so is in the State budget for the new fiscal year. The solution is at hand and in your hands!”
I would urge that this message be sent to all the principal players on the State’s side: Governor Andrew Cuomo; his Deputy Secretary for Health, James Introne; Assembly Speaker Sheldon Silver; Senate Majority Leader Dean Skelos; Richard Gottfried, Chairperson, Assembly Health Committee; Felix Ortiz, Chairperson, Assembly Mental Health Committee; Kemp Hannon, Chairperson, Senate Health Committee; Roy McDonald, Chairperson, Senate Mental Health Committee; Michael Hogan, Ph.D., Commissioner, NYS Office of Mental Health; Nirav R. Shah, M.D.,, Commissioner NYS Department of Health.
I would further urge that the message be sent via e-mail, letter, ‘phone or petition to the persons listed above. I prefer letters, since they take up the most space in legislators’ mailboxes and usually have the greatest impact, but they’re also labor intensive. E-mails and petitions will also have an impact, provided they’re sent and signed principally by the persons who most stand to benefit from an agreement, viz., adult home residents and their peer supporters. Getting folks to sign is a great organizing tool and tactic, and will begin to get those who wish to move from their adult homes to thinking about the important decisions they will eventually have to make. Their support and active involvement are vital to ultimate success.
For those readers who would like to lend their support to this effort – Remember! It has nationwide implications and will free thousands of individuals from truly oppressive situations – I’ve listed immediately below the e-mail addresses of all the New York State elected and appointed officials named two paragraphs above. Feel free to use or riff on the message I outlined three paragraphs above. I’ll keep you updated on what CIAD and friends ultimately decide to do. As always, don’t mourn, organize!!
• Governor Andrew Cuomo: www.governor.ny.gov/contact
(click on “contact” link and complete e-mail form)
• James Introne, Deputy Secretary for Health
(mailing address: Executive Chamber, State Capitol, Albany, N.Y. 12224;
• Sheldon Silver, Speaker, NYS Assembly: firstname.lastname@example.org
• Dean Skelos, Majority Leader, NYS Senate: email@example.com
• Richard Gottfried, Chairperson, Assembly Health Committee:
• Felix Ortiz, Chairperson, Assembly Mental Health Committee:
• Kemp Hannon, Chairperson, Senate Health Committee
• Roy McDonald, Chairperson, Senate Mental Health Committee
• Michael Hogan, Ph.D., Commissioner, NYS Office of Mental Health:
• Nirav R. Shah, M.D., Commissioner, NYS Department of Health
Carney, J., “Helping Consumers Add Years To Their Lives. IV: The Beginning of the End of Institutionalized Housing in New York City,” www.behavioral.net, April 7, 2011
Cuomo, A., “State of the State,” January 4, 2012
Disability Advocates, Inc. v. Andrew M. Cuomo, U.S. Court of Appeals for the Second Circuit, April 6, 2012
Levy, C., “Broken Homes: A Final Destination,” New York Times, April 28, 2002
(1st in series of six articles; last – November 17, 2002)
Olmstead: Community Integration for Everyone, www.ada.gov/olmstead
“One Flew Over the Cuckoo’s Nest,” 1975, www.imdb.com/title
Secret, M., “Court Upends 9-Year Fight on Housing Mentally Ill,” New York Times, April 6, 2012
Vine, P., “Solitary Confinement Reformed in New York,” www.MIWatch.org, January 16, 2008