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ASAN, Disability Rights Organizations Urge Changes to Combating Autism Act

On Monday, the Autistic Self Advocacy Network released a joint letter to Congress, signed by fourteen other organizations, urging changes to the Combating Autism Reauthorization Act, H.R. 4631.


June 2, 2014

Dear Chairman Pitts and Ranking Member Pallone:

We, the undersigned organizations committed to advancing equality of opportunity for people with disabilities, write with regard to H.R. 4631, which would reauthorize the Combating Autism Act (CAA). H.R. 4631 fails to address many of the existing problems in the CAA, such as its lack of funding and attention to services or the needs of adults, failure to include adequate self-advocate representation on the Interagency Autism Coordinating Committee (IACC), and the use of language offensive to and stigmatizing of autistic individuals. We urge you to oppose H.R. 4631 until these issues are addressed.

  The Bill Should Not Create Unnecessary Bureaucratization of Autism Policy H.R. 4631 would create a new program within the Department of Health and Human Services (HHS), the National Autism Spectrum Disorders Initiative, devoted entirely to implementing within HHS the “strategic plan” for autism research developed by the Interagency Autism Coordinating Committee and ensuring that HHS-funded autism research programs are not “unnecessarily duplicative” of other federal programs or activities. This initiative creates additional roadblocks for autism research carried out by one of the primary executive departments responsible for ensuring that autistic children and adults receive the services they need, without addressing underlying problems on the IACC that undermine the effectiveness of its strategic plan. Currently, only a small fraction of federal research funding focuses on effective delivery of services or on the needs of autistic adults: in 2010, the most recent year in which data is available, the National Institutes of Health (NIH) allocated under 4% of its autism research funding toward these topics. Absent amendments to the CAA requiring the IACC to devote added attention to services and the needs of adults, a new initiative devoted to enforcing the IACC’s “strategic plan” may actually exacerbate this trend.

Increase Representation of Self-Advocates on the IACC H.R. 4631 would require that only two public members of the IACC – out of a current total of 14 – be individuals with an autism spectrum diagnosis. Autistic people are uniquely suited to assessing which research and services programs are most needed in order to improve their own lives. We believe that any reauthorization legislation should ensure that 1/3 of the public members of the IACC be individuals with an autism spectrum diagnosis.

Use Language that is Inclusive and Respectful of the Autistic Community H.R. 4631 would retain the title of “Combating Autism Act,” language which is both hurtful and stigmatizing. The purpose of federal autism-related activities should not be to “combat” autism but rather to support autistic individuals and their families. Advocates have called for an updated title reflecting these goals, such as the Autism Community Empowerment Act.

Ensure Future Flexibility in Federal Autism Policy In addition to perpetuating and exacerbating an already-broken status quo, H.R. 4631 would effectively ensure continuation of that status quo for another five years. By extending reauthorization the Combating Autism Act until 2019, H.R. 4631 would act as a major impediment to comprehensive reform in the near future.

Until the above concerns are addressed we urge opposition to H.R. 4631. We stand ready to work with you to support the development of a more inclusive and responsible reform of the Combating Autism Act.

Sincerely,
ADAPT
Association of People Supporting Employment First
Association of Programs for Rural Independent Living
Autism Women’s Network
Autistic Self Advocacy Network
Bazelon Center for Mental Health Law
Little People of America
National Council on Independent Living
National Down Syndrome Congress
Not Dead Yet
Quality Trust for Individuals with Disabilities
Self Advocates Becoming Empowered
TASH
Washington Metro Disabled Students Collective

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