Oregon Autism Committee (Autistics Now Included)

Kristina posted yesterday about Oregon's special education numbers; another Oregon news site reported more specifically about the special education numbers for students meeting the educational criteria for autism: 7,579 students to be exact. That second story is also chock full of the recently released numeric statistics, and notes that the numeric "rise has led to calls for a state panel to coordinate services, offer information."

The story cites Oregon House Bill 3001 which "Creates Oregon Commission on Autism Spectrum Disorder and requires commission to provide strategic plan to legislature. Establishes Oregon Commission on Autism Spectrum Disorder Fund. Continuously appropriates moneys in fund to commission."

This commission looks like the next step of Representative Edwards' autism work group and recommendations, which inspired me to full ire last fall when I received an invitation to a town hall meeting to discuss the findings--the invitation was for "parents and advocates of people with autism." Not for autistic people. I, of course, showed up anyway. To mention not just the invitation oversight, but also the fact that the recommendation itself had been crafted without input from autistic people, and that the recommended committee did not include a slot for a self-advocate. Here's a transcript of radio coverage from the meeting, including a quote from me.

After my testimony, a revised version of the invitation was sent out that included self-advocates. Good! But too early for a cheer--I was waiting to see inclusion on the real policy level. So I was thrilled when I read the description of HB 3001 to see (emphasis mine),

(2) The Governor shall appoint the following members of the commission, who must be knowledgeable about autism spectrum disorder or services for people with autism spectrum disorder:
(a) A person with autism spectrum disorder;
(b) A parent of a child with autism spectrum disorder who is under the age of 18 at the time of the parent′s appointment;
(c) A parent of an adult with autism spectrum disorder;
(d) A representative of an autism or disability advocacy organization;
(e) A physician licensed under ORS chapter 677;
(f) A representative of the Department of Education;
(g) A representative of the Department of Human Services;
(h) A representative of the Department of Higher Education;
(i) A member from the public at large;
(j) A representative of a school district or a local education service district; and
(k) A member representing the insurance industry.

I have no idea if my actions lead to (a) in any way, but it doesn't matter--what matters is that an autistic self-advocate is included on the commission--HOORAY! I'm cynical enough to keep the champagne corked until I see that the appointed member will truly bring the concerns of autistic adults in the community to the table and isn't just a token "shiny." But I'm also hopeful. Person (d) is also of interest--would be great to see a disability rights organization, and for the representative to either be on the spectrum or to have another type of disability.

One thing we self-advocates can do to make sure our interests are included in autism policy is to go to public discussions on autism legislation and demand to be included--"Nothing about us without us."

If this committee is created, it will be interesting to see what happens when those 13 people with very different interests come together to discuss autism policy. How will it work with the inevitable conflict of goals represented by each of the committee members' specific interests? Will it find a way for everyone to win?