No government agency has exclusive jurisdiction over all of these areas. The federal government takes the lead with some, while states and localities may be the main arenas for others. At each level, different bureaucracies deal with different aspects of autism. Courts and private organizations also play important roles in autism policymaking. Each place on the autism policy map has its own jargon and rules, hence the “alphabet soup” that bedevils parents.
From Representative Mike Doyle (D-PA):
U.S. Representative Mike Doyle (D-PA) announced today that bipartisan legislation to reauthorize federal programs and activities that help individuals with autism spectrum disorder (ASD) and their families has been approved by the U.S. House of Representatives.
This bill, the Autism CARES Act of 2019 (H.R. 1058), is supported by a broad coalition of autism and disability advocate organizations, including Autism Speaks, the Autism Society of America, the Association of University Centers on Disabilities, and the American Academy of Pediatrics. A companion bill (S. 427) was introduced in the Senate by Sens. Bob Menendez (D-NJ) and Mike Enzi (R-WY).
The Autism CARES Act of 2019 would reauthorize the Autism CARES Act of 2014 (P.L. 113-157). It would authorize over $1 billion in funding for programs at the National Institutes of Health (NIH), Centers for Disease Control (CDC), and the Health Resources and Services Administration (HRSA) over five years. At CDC, the funding would go to developmental disability surveillance and research; at HRSA, the funding would cover education, early detection and intervention; at NIH, the funding would cover the expansion and coordination of autism-related activities.
Among other actions, the legislation:
• Requires HHS to report to Congress on the progress of activities related to autism and other developmental disabilities, and the health and well-being of individuals on the autism spectrum.
• Directs NIH to conduct research targeted at improving outcomes and detection for persons with autism of all ages.
• Directs HRSA to prioritize grants for developmental-behavioral pediatricians in medically-underserved areas.
• Amends sections of the Public Health Service Act (PHSA) to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages, not just children.
Click here to see Congressman Doyle’s statement today in support of the Autism CARES Act.