Wired Magazine has an interview with Ari Ne’eman, Exclusive: First Autistic Presidential Appointee Speaks Out. Mr. Ne’eman has been appointed by the Obama administration to to positions: a seat on the Interagency Autism Coordinating Committee (IACC) and a seat on the National Council on Disability (NCD).
The author of the Wired piece, Steve Silberman, also blogs at PLoS. His piece there is No More Pity: The First Openly Autistic White House Appointee Speaks Out.
The Wired piece does touch on the opposition to Mr. Ne’eman’s appointment. I am grateful that this an other side issues are also met with a real discussion of what Mr. Ne’eman’s views are. I wish there even more of that discussion. Here is a small sample:
Very few of us wake up in the morning and think, “Have they developed a proper mouse model for autism yet?” Instead, autistic people and their parents worry about finding the educational and support services that they need.
As a parent, I appreciated this question and answer:
Wired.com: What advice would you give to neurotypical people who want to become effective allies of the autistic community?
Ne’eman: At the political level, watch where your money is going. There are a lot of well-meaning people who think they’re helping us by donating to Autism Speaks or other groups looking for a cure. It would be better for people to get involved in their local communities and ask tough questions like, “Is my school inclusive? Is my workplace willing to hire autistic people and other people with disabilities?”
Given Mr. Ne’eman’s recent appointments, I felt this was probably the key question of the interview:
Wired.com: What do you hope to accomplish in Washington?
Ne’eman: All across the country, we have hundreds of thousands of people on waiting lists for access to community services. People with disabilities don’t have the support we need to live independently, be employed, and participate in civic life. Instead, because of a bias in the way Medicaid is structured, many of us are segregated in institutions, which offer a much lower quality of life to disabled people at the same time that it works out to be much more expensive. It’s easier to get states to pay for an institution than to get them to allow people to access services in their homes. Making community services more accessible would be a huge game changer for all kinds of people with disabilities.
Passing one particular piece of legislation — the Community Choice Act — would accomplish that. The Community Choice Act would make it so that states would be required to pay for supports and services at home or in the community, but it would actually save money, because institutional placements are very expensive. There’s no reason not to do this.