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.
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.
<!– HTML Credit Code for Can Stock Photo –>
<a href=”http://www.canstockphoto.com”>(c) Can Stock Photo / zaganDesign</a>