I get to visit a lot of centers, and meet a lot of people who work for CILs or SILCs or are on the board of one. I see centers that are “service providers” and, in contrast, centers that are the meeting place of the “disability community”, and there is a big difference between these two very different approaches to IL. I have not specifically visited Michigan, but I have followed some of the writings of advocates there. A recent article on that topic got me to thinking about these differences and their import.canstockphoto12372026

Because we (CILs) receive federal and sometimes state funding, we are required by that funding to look a certain way, to provide specific core services, to meet specific requirements of consumer control. Those organizations that focus on the specifics of service delivery are in danger of staff and board claiming a diagnosis to qualify as a consumer so the numbers work out, and missing the point of consumer control. Sometimes I am asked what to do when a board or staff member doesn’t self-identify as disabled, but the Executive Director is aware of some condition that the ED feels would qualify. My answer is always, “If they don’t disclose a disability you cannot count them in your more than 50% requirement for consumer control. If they identify as part of the disability community they will tell you.”

The CIL’s board must be made of of the same people who are eligible to receive services as described in the Rehab Act. More than 50% of SILC members must be people with disabilities who don’t work for the state or a CIL. If you are recruiting these members and ever find yourself asking, “Don’t you have some disability of some kind?” (talking a board or staff member into claiming a disability) your CIL or SILC is missing the point.

Some of this has happened because bright, mainstreamed, professional adults with disabilities never darken the door of a CIL. Unless you have an active youth network, those individuals don’t know about our history in disability rights. They don’t yet see that they can be a part of the disability community and contribute their experience and independence to benefit all of us. And the SILC and CILs look for representation instead of consumer control.

I think our hope of getting IL off of “life support” (quoting Eleanor Canter,Advocate) lies in our youth, who come together regardless of whether or not they have an IEP or other disability related services while in school. They are excited to learn about disability rights and culture. We must encourage them to exert their leadership on SILCs and as staff and board member of CILs, and to re-frame Centers as a place where as a culture all people with disabilities gather, learn from each other, plan together for the community, and go forth to change the world.

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Consumer Control? Disability Community?

One thought on “Consumer Control? Disability Community?

  • November 11, 2016 at 9:14 am

    Words can not express my gratitude for your message about the unique IL model of service delivery and its foundation in consumer control.
    Teachers, doctors, other people saw me as disabled long before I identified with my disability, but when I did, it was with pride in my community, my people. My CIL was built by and for people with significant disabilities who redefined my experience. Being in the company of consumers exercising their power to transform our community was a contradiction of everything I had been taught about disability.
    At the time 90% of the staff, board and volunteers were easily identifiable as disabled and their presence in a meeting or a public event was enough to challenge the stereotype of weak or powerless. I loved those people who asserted their right to be counted as members of the greater community. They were remarkable individuals but some of that strength and confidence came from knowing they were part of system of peers supporting each other, pushing the boundaries of what is possible for people with disabilities.
    The existence of a consumer controlled CIL made every student with an IEP, or every group home resident with a PCP, or every job seeker with a IPE empowered to make decisions in their own interest. When CILs look like every other service provider they forfeit their most powerful tool for change, a visible disability community present and proud contradicting prejudice and discrimination.
    Thank you for giving voice to the critical role of disability identity and consumer control.


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