Petitioning Director, California Department of Managed Healthcare Brent A. Barnhart and 7 others
Autistic People Need Representation on CA Healthcare Task Force
259
Supporters
The California Department of Managed Healthcare has announced the composition of its Autism Task Force. As it currently stands, no autistic people are represented on the 18-person panel which will make key decisions affecting autistic people's healthcare. Moreover, the panel does include an anti-vaccine activist, a person who has made numerous statements dehumanizing autistic people, and two representatives from an organization which has consistently excluded autistic people from its leadership. Autistic people deserve to have a voice in manners that affect us directly, and the panel as currently composed completely fails to give us adequate representation.
Letter to
Director, California Department of Managed Healthcare Brent A. Barnhart
California Department of Managed Healthcare Autism Advisory Task Force
Chief Deputy Director, California Department of Managed Healthcare Shelley Rouillard
and 5 others
When it comes to issues related to autism, autistic people have a valuable and unique perspective to offer policymakers. Yet no autistic people have been appointed to the Department of Managed Healthcare's Autism Advisory Task Force. This exclusion should be rectified through the appointment of autistic people to the task force. As direct stakeholders, autistic people need a place at the table when these critical issues are being discussed.
Unfortunately, the problems with the task force's composition do not end at the lack of autistic representation. Several members of the task force have histories which suggest that they are not ideal candidates for deciding on the future of autistic people's healthcare. Rick Rollens has an extensive history of anti-vaccine advocacy. Given that the idea of any sort of link between autism and vaccines has been thoroughly discredited, we question the appropriateness of Rollens' appointment to a panel devoted to healthcare. Autistic people, and indeed all Californians, deserve healthcare policies based in sound science, not discredited pseudoscience.
Another member whose appointment concerns us is Dr. Bryna Siegel. Dr. Siegel has repeatedly made dehumanizing and inaccurate statements about autistic people in various media outlets. These statements include the idea that autistic people "do not understand or are missing a core component of what it is to be human." For the article in which this statement appears, and for other articles in which Siegel makes problematic statements about autistic people and parents of autistic people, see these links:
http://www.usatoday.com/news/health/spotlight/2002/04/10-autism.htm
http://www.nature.com/news/2011/111102/full/479025a.html)
http://www.thedailybeast.com/articles/2012/02/07/asperger-s-over-diagnosed-ill-defined-may-not-be-a-syndrome-much-longer.html
For someone with these views to be appointed to an important position on this panel is quite concerning, as is the appointment of Kristin Jacobson and Lorri Unumb. Both Jacobson and Unumb represent Autism Speaks, an organization which has persistently excluded autistic people from its leadership and failed to represent autistic people's concerns in their advocacy efforts. The organization also has a troubled history of representing autistic people in dehumanizing and exploitative ways.
As it currently stands, the task force fails to represent autistic people, while giving a prominent voice to individuals who hold discredit ideas that endanger public health and who actively dehumanize and exclude autistic people. This can and should be corrected.
Unfortunately, the problems with the task force's composition do not end at the lack of autistic representation. Several members of the task force have histories which suggest that they are not ideal candidates for deciding on the future of autistic people's healthcare. Rick Rollens has an extensive history of anti-vaccine advocacy. Given that the idea of any sort of link between autism and vaccines has been thoroughly discredited, we question the appropriateness of Rollens' appointment to a panel devoted to healthcare. Autistic people, and indeed all Californians, deserve healthcare policies based in sound science, not discredited pseudoscience.
Another member whose appointment concerns us is Dr. Bryna Siegel. Dr. Siegel has repeatedly made dehumanizing and inaccurate statements about autistic people in various media outlets. These statements include the idea that autistic people "do not understand or are missing a core component of what it is to be human." For the article in which this statement appears, and for other articles in which Siegel makes problematic statements about autistic people and parents of autistic people, see these links:
http://www.usatoday.com/news/health/spotlight/2002/04/10-autism.htm
http://www.nature.com/news/2011/111102/full/479025a.html)
http://www.thedailybeast.com/articles/2012/02/07/asperger-s-over-diagnosed-ill-defined-may-not-be-a-syndrome-much-longer.html
For someone with these views to be appointed to an important position on this panel is quite concerning, as is the appointment of Kristin Jacobson and Lorri Unumb. Both Jacobson and Unumb represent Autism Speaks, an organization which has persistently excluded autistic people from its leadership and failed to represent autistic people's concerns in their advocacy efforts. The organization also has a troubled history of representing autistic people in dehumanizing and exploitative ways.
As it currently stands, the task force fails to represent autistic people, while giving a prominent voice to individuals who hold discredit ideas that endanger public health and who actively dehumanize and exclude autistic people. This can and should be corrected.
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