Congressional Letter Urging increased representation of Autistic Adults in Autism CARES Act programs

as shared by the Autistic Self Advocacy Network

PRESS RELEASE | Oct 29, 2014

Autistic Self Advocacy Network applauds letter from Congressional champions urging increased representation of autistic adults in Autism CARES Act funded programs.

WASHINGTON, D.C.—The Autistic Self Advocacy Network applauded five leading congressional champions for autism services this morning for authoring a letter sent yesterday to the Department of Health and Human Services (HHS) and the National Institutes of Health (NIH). The letter, signed by Rep. Jan Schakowsky (IL-9), Rep. Tammy Duckworth (IL-8), Rep. Kathy Castor (FL-14), Rep. Jackie Speier (CA-14) and Rep. Paul Tonko (NY-20), expressed concern with lack of representation of autistic people in programs funded by the Autism CARES Act, recently passed legislation governing federal autism programs.

The letter notes the severe underrepresentation of autistic people on the Inter-Agency Autism Coordinating Committee (IACC), which is responsible for overseeing all federal funds used on autism research, and in federally-funded programs on autism and other intellectual and developmental disabilities. The letter also expresses concern over the disproportionately small percentage of research funding that focuses on quality of services (2.4%) and adults on the autism spectrum (1.5%).

“HHS should take the opportunity posed by the Autism CARES legislation to address long-standing inequities in federal autism policy,” said Ari Ne’eman, President of the Autistic Self Advocacy Network. “We applaud Rep. Schakowsky and the other signatories to this letter for their leadership in urging real inclusion of autistic people in federal autism policymaking.”

The signatories to the letter recommended increasing representation of autistic people and organizations run by them on the IACC, ensuring that autistic people participate in training programs funded through the law and other measures designed to enhance participation of autistic people in programs designed to serve them.

The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. ASAN’s supporters include Autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators and friends. Its activities include public policy advocacy, community engagement to encourage inclusion and respect for neurodiversity, leadership trainings, cross-disability advocacy, and the development of Autistic cultural activities.

For the Autistic Self Advocacy Network: http://autisticadvocacy.org/