July 28, 2009

The Failure of the IACC: The Combating Autism Act Inaction

Katie Wright on Age of Autism:

The (Not) Combating Autism Act in Action
By Katie Wright

This is an open letter to all the parents, families, teachers, therapists and others who worked so hard getting the CAA bill passed. Thousands of you called, e-mailed and wrote to your representatives. Dozens of families traveled to DC to meet with their Congresspersons and Senators and personally explain why autism research and services desperately need more funding. Some of you picketed the offices of non-supporters, my parents traveled to DC a dozen times and used every connection they had to make our families heard. It required Herculean efforts to pass a “single disease” bill but our community was relentless and determined.

Today The Interagency Autism Coordinating Committee is responsible for disbursing the millions of dollars in CAA funds. Almost no one who worked for the passage of the CAA was appointed to the committee. IACC is packed with bureaucrats who seem to have a very limited understanding of autism as a disease and autism science. Only Lyn Redwood, who has an encyclopedic knowledge of autism research, of NAA and SafeMinds is representing my child and the hundreds of thousands like him. Only Lyn comprehends the tremendous medical challenges facing our children and urges IACC to fund research that reflects a sense of urgency and purpose.

Most of the bureaucratic committee members could not make a decision about how to get out of paper bag. The talking and talking in circles, the requesting for the creation “blue ribbon panels”, more subcommittees and more outside opinion, goes on forever. Why didn’t Tom Insel just appoint autism experts to this autism committee in the first place? Why are committee members constantly struggling to understand the basics of autism science and looking to others to inform them how to make decisions? They wait and wait and wait to make decisions. Insel wants to wait for more subcommittees, wait for more expert opinion, wait for a new administration, wait until the next meeting- wait to grow old? The only thing IACC is in a hurry to do is adjourn! Then when IACC finally does make an important decision, such as to fund 2% of CAA monies on vaccine safety research, Insel hastily undoes that vote after the meeting.

The public members include Lyn Redwood, who represents 100,000s of families, as well as Lee Grossman of ASA and Stephen Shore, who represent organizations serving people with autism. An ASD Mom, Christine, was appointed because she is Insel’s neighbor. Christine seems like a perfectly nice person but represents no national autism organization and has no scientific background. And finally, Alison Singer. Singer, as you may remember, absconded with AS’s IACC seat and now runs a mysterious autism org in her basement. This bizarre org is led by Paul Offit and a handful of autism ancient history researchers. Don’t our families deserve better than this? Don’t our kids deserve REAL representation from established autism organizations?

Where are our families’ voices? Where is AS’s seat? Where is NAA’s seat? Where is Generation Rescue’s seat? Where is TACA’s seat? All these organizations are legitimate, professional 501c3 nonprofits, they have funded tremendous research, aided families and represent hundreds of thousands of our children yet they have been purposely excluded by Insel’s IACC.

At the last meeting Insel and Della Hamm rushed through the agenda as if the building was on fire. In the process they canceled scheduled appearances of 3 Moms and their seriously affected autistic children in order in order to end the meeting 2 hours early. One gets the impression that Hamm and Insel have more important places to be. Cutting out early and getting home ahead of schedule seems to be priority #1.

Please check out the IACC website and take a look at the next agenda schedule. At the bottom of the agenda is a warning that IACC will possibly end early (again) so if you tune in via telephone or computer don’t be surprised if you hear dead air. Again. What? These people should be working day and night on autism, not treating these meetings as some kind of tedious inconvenience to be dealt with as quickly as possible.

If IACC is such a burdensome responsibility for the bureaucrats I suggest that they lighten their load and step aside. There are so many brilliant minds who would work flat out 24 hours a day in order to spend this money wisely. Lisa Ackerman, Wendy Fournier, Peter Bell, Elizabeth Emken, Theresa Wrangham, Jane Johnson, Mark Blaxill, Stan Kurtz, Sallie Bernard, Becky Widen, Jon Poling, Teri Poling, Rebecca Estepp, Vicky Debold, Laura Bono, Scott Bono, Barbara Loe Fisher…I could go on forever. These people are ALL parents of affected children, leaders of large, legitimate, autism organizations and experts in autism science. These advocates would make IACC their top priority. There would be absolutely no canceling meetings or ending early. Any one of these parent advocates would view serving our community as an honor, rather than a chore.

Katie Wright is Contributing Editor for Age of Autism.

Why do we give control of the destiny of our children to people who don't care about our children?


kevin said...

Powerful post. I know little about autism and less about IACC, but you don't need to know anything about them to realize what's going on with the IACC is backward. I'm not directly affected by autism, and I'm baffled and disturbed to read your description and opinion of the latest on the IACC. I work for icyou.com, a user-generated website that features health care videos. we have an abundance of videos on autism, but we don't have much that pertains to politics and policy. your position and post suggest your range and depth with respect to autism in the u.s. if you have any videos, or know of anyone who has videos, in which the politics and policy of autism are discussed, i encourage you and them to upload them to icyou. we'd love to see your work on icyou. our goals are to provide the most balanced health care information on the web via video--we feature videos from patients, doctors, hospitals, researchers, other experts, family members, etc--and to raise awareness about the role the web can play in shaping health care. check out the site. looking forward to reading your next post.

Tammy said...

Well said. I hope you don't mind, but I used your create a link feature to link your post to my blog.