1.16.2018

IACC Meeting Tomorrow, January 17

The NIH's Interagency Autism Coordinating Committee, or IACC, will be meeting all day tomorrow, Wednesday, January 17th, 9AM to 5 PM East Coast time. What happens at the IACC meetings? From the site:
"The purpose of the IACC meeting is to discuss business, agency updates, and issues related to autism spectrum disorder (ASD) research and services activities. The meeting will be open to the public and will be accessible by webcast and conference call."
So, if you can't attend in person, you can watch the webcast. If don't have all day to watch the webcast, you can choose sessions from the agenda.

The IACC also accepts both in-person and written public comments, which need to be submitted seven business days before the meetings. Below is the comment I submitted for this meeting. Once of these days I'll make it in person.

If you're thinking to yourself, "Oh my comments won't make a difference," then perhaps you should take a look at the wildly varying ... quality of the submitted comments for this session, and also how few they are. Thoughtful, well-reasoned, non-profane, non-pseudoscience, non-self-loathing comments, both public and oral, are in short supply.
I am the parent of a 17-year-old high-support autistic son, and am writing regarding my concerns about his near-future integrated housing options. Those concerns are twofold: 1) I want my son to be part of his community, and 2) I am worried about ongoing efforts to erode existing civil rights safeguards that protect and guarantee integration for people with disabilities. 
As this committee must be aware of the body of research supporting integrated housing options for people with disabilities, in terms of both improved quality of life and wider community disability acceptance, I will instead emphasize the basic decency factor: My son and his adult soon-to-be peers are part of their local communities, and they deserve whatever supports they need to live the lives they want to live—in those communities. I urge the committee to redouble efforts to make those options more readily available, and to identify attempts at segregated housing, veiled or outright, farm-based or "neo-institutional," as the isolating and dehumanizing options that they are. 
I also urge the committee to exercise vigilance and demonstrate opposition to recent Department of Justice rollbacks on disability protections. We cannot allow civil rights for autistic people, including those integration protections upheld by Olmstead, to be decided by business interests (e.g., the sheltered workshop industry suspected to have lobbied for last month's disappointing DOJ actions). My son's housing options need to be determined by what he needs and deserves, and not by the calculations of a profit-minded entity.
I would like to thank the Committee members for both their time, and their hard work.
I may not be able to watch much of it as we're all down with the flu. But I'll try. And I hope you will, if you can, too.

No comments:

Post a Comment

Respectful disagreement encouraged.