A coalition of disability advocacy groups is pushing for major changes to the Combating Autism Act, which is up for reauthorization this year.
The CAA, passed in 2006 and last reauthorized in 2011, has designated more than a billion dollars for medical research relating to autism.
The advocacy groups, however, in a letter sent April 9, argue that more of these funds should be allocated to research for the “purposes of research on services and the needs of adults” with autism.
In 2010, the National Institute of Health allocated just 2.4 and 1.5 percent, respectively, of its autism research funding on these types of research, according to the letter. The advocacy groups call for a quarter of the NIH’s autism researching funding to be allocated for these purposes.
“It is crucial that Congress ensure that any additional focus on services and adults in the CAA reauthorization should be in the form of added support for research,” the letter states. “Federal laws and regulations governing services delivery and ensuring the rights of individuals with disabilities, not the CAA, are the appropriate vehicle for addressing any necessary policy reforms.
“The CAA instead should promote research to develop and improve high-quality, scalable, and community-based approaches to services delivery.”
In addition, the advocacy groups argue for reform of the Interagency Autism Coordinating Committee, a federal advisory committee created by the CAA, to ensure it includes more representation of people with autism.
Finally, the advocacy groups argue that Congress should eliminate the word “combating” in the law’s name.
“By naming its primary autism-related legislation the ‘Combating Autism Act,’ Congress furthers stigma and prejudice against autistic people and their families,” the letter stated. “The purpose of federal autism-related activities should not be to ‘combat’ autism but rather to support autistic individuals and their families.”
The letter was addressed to Sen. Roberto Mendenez (D-N.J.), Rep. Chris Smith (R-N.J.) and Rep. Mike Doyle (D-Pa).