Autism CARES Act Marked Up with Additional Self-Advocate Representation, ANCOR Led Letter of Support

ANCOR led a letter of support for the Autism CARES Act to advocate for additional self advocates with autism to advise on research priorities for federal autism dollars. The letter went to the chair and ranking member of the House Energy and Commerce Committee, which marked up the bill on June 16. ANCOR has long supported the Autism CARES Act, which funds autism and research programs, while also advocating for more representation of adults with autism on the Interagency Autism Coordinating Committee (IACC), and additional focus on services across the lifespan. Next steps for the Autism CARES Act are a vote by the full House and then Senate committee and floor votes. Leading sponsors of the bill have agreed to include the requirement of additional self-advocate slots on the IACC. The bill is due for reauthorization by the end of September.

As written in the letter:

“The Autism CARES Act of 2019 provides several improvements, including a requirement for a report on the health and well-being of individuals with autism and greater emphasis on research on services and supports across the lifespan.  In addition to making several technical changes, the manager’s amendment increases the minimum number of individuals with ASD, parents or guardians, and representatives of leading organizations on the IACC from two to three each. We believe that people with disabilities in particular – including people with the most significant disabilities – should be at the center of research and policy regarding their lives and an additional member with ASD on the IACC is a welcome improvement.”