'Most Integrated Settings Coordinating Council' forum testimony
Sherry Taub, John Jay College, New York City July 15, 2004

Thank you for the opportunity you have provided here today for people with disabilities to offer feedback regarding how services could be provided us in a way that honors our rights as equal citizens and human beings. Especially, our right to live in our communities in unsegregated housing.

First, a complaint, because I want everybody to be heard. In the disability community, we speak of removing barriers. But the closest thing I found to the word "change" on the admission form for this hearing was "improving quality," and I need to tell you that such positive language becomes a gatekeeper, downplaying and in effect discouraging complaint about current conditions. It almost succeeded in discouraging me from coming out today. It would have, if I didn't happen to know more experienced advocates who advised me to "just ignore the form, and say what you need to say." If you honestly want to help remove barriers, then please try not to create them in your language, and in effect discourage us from telling you where barriers already exist.

I need to feel I'll be heard in talking about what has been harmful, before I can even begin to envision something completely different being possible. I don't believe I am unique in this respect. I think you need to ask and learn what's wrong with the current system, from our point of view, before you can change it for the better. Also, Olmstead was not named in the application for testifying here today, but since it is the primary word through which most people I know are beginning to hear about and grapple with the concept of "most integrated settings", more people may have come out to testify if it had been included.

The two categories in which we were offered the opportunity to speak, other than transportation, were "natural supports" or "formal care systems". Outside your categories, I came here to speak about the necessity of separating "formal care systems" from residential settings (normally known as homes), if we are to have any hope of true integration for people with psychiatric diagnoses.

I lived for many years in housing designated as being for people with psychiatric disabilities. I learned that the provision of "services" is unusually coercive in so-called "mental health" settings. COERCION does not make a HOME.

Sometimes providers offered real services when I asked for help - that is, supports that were truly of use to me in pursuing my self-chosen goals. But to me, what I didn't ask for and didn't want wasn't a service, and when it was still pressed upon me after I'd made clear it wasn't what I wanted or needed, I found it extremely oppressive. Staff often insisted on "helping" in ways that greatly hindered me in my personal recovery goals. For example, my disability causes me to often be unusually low-energy in the early part of the day. I have more energy in the late afternoons and evenings, but the residential staff demanded I go to a "day treatment" program, rather than work evenings at the local art cinema. They told me over and over again that I couldn't "keep this up" while living there, in effect, continuously threatening me with eviction.

What, I was asked, did I think I was -- a special case? My unique interests and capabilities didn't suit the administrative agenda, in which what is easiest for the provider is good for the clients. I had to sneak around the expectations of my supposedly jointly developed "individual treatment plan" in order to lead the book discussion groups at my local library, and it wasn't till I left the community residence for Section 8 non-'mental health'-designated (i.e., normal) housing that I could do it continuously enough to get a paid position. No thanks to the "community" residence, which was actually a segregated, oppressive mini-institution.

While living there, the very things that would have been natural supports - to use your phrase - for me in my aspiration toward becoming a full member of my community, were rendered nearly inaccessible to me. It was only through frequent, upsetting clashes with residential staff or by subterfuge (neither at all conducive to my mental health) that I managed to integrate myself into my community. If they had won in their battle to help me by keeping my days centered on "treatment", there would have been no book discussions held at the town library during that period. And I wouldn't have managed to serve on my town's citizens advisory council to the office of handicapped services.

Mental health treatment is often, in its very nature, predicated on the belief that somebody else knows better than you do what is good for you. That is deeply entrenched, and it will not be an easy thing to change. But if the Olmstead decision is to have a positive impact on our lives, we need you to recognize that people recovering from difficult emotional states need the safety of homes of our own, at least as much as anybody else does.

You must separate treatment (aka "services") from housing, if you want to ensure people with psychiatric disabilities really have homes, in which we, as much as people with other kinds of disabilities, can hope to realize the goals of self-determination and independent living that Olmstead is intended to promise us.

It is well known and easily understood that human beings need some sense of control of their own lives, in order to experience good emotional health. Unfortunately the encroaching and dominating nature of mental health service provision in the current model often tends toward the opposite effect. People with psychiatric disabilities should not be required to give up self-determination. We need to live in an environment that provides access to freely made choices, just as all people do. Attaching services directly to housing has the effect of seriously undermining autonomy. Of course a "bundled" or "service enhanced" housing model, in effect not an independent but a dependent living model, should be kept available for people who feel they need it. But it should be a choice - the exception, not the rule.

There is some wonderful language in the president's "New Freedom" commission Housing Subcommittee report, about our right as citizens to live in our own home, free from interference, and our natural desire to live alone or with people of our own choosing - rather than live in congregate housing designated (or segregated) for psychiatric disabilities. But in a disturbing footnote, "supported housing" - a category created to ensure tenancy rights and more normal living conditions, especially independence from oppressive monitoring - is nearly defined out of existence. The footnote says that supportED housing should no longer be distinguished form supportIVE housing, which has historically been congregate and segregated, with on-site or directly attached psychiatric "services".

And the so-called "Samaritan" initiative, now working its way through congressional committees, would create more housing directly tied up with psychiatric treatment, even support housing run by managed care companies.

Let's not reduce human beings' lives to funding streams. I am asking you, in implementing Olmstead in New York, to remember our desire and our right to live in unsegregated homes in our communities, free from interference. I am asking you to protect and further our right to, while living in our own homes, independently choose and access services we find supportive of our very individual paths to recovery - rather than suffer the infantalization, disrespect, and often lasting harm of having our housing tied to (and contingent on) psychiatric treatment and all the coercively provided services associated with it. No one ought to be made to chose between on the one hand, housing, and on the other, independence and human dignity.

I hope that throughout your planning process, you will offer many more opportunities for everyone directly impacted to speak, and that what we say will shape your decisions. I hope that you will throughout your process remember and honor the central formula for planning policies concerning people with disabilities:

NOTHING ABOUT US WITHOUT US!

Sherry Taub
Greenlawn, NY