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.
U.S. Senators Mike Enzi, R-Wyo., and Bob Menendez, D-N.J., senior members of the Senate Finance Committee that sets national health policy, today applauded the unanimous, final passage of the Autism Coordination, Accountability, Research, Education and Support (CARES) Act of 2019 that, for the first time, considers the needs of individuals with autism spectrum disorder (ASD) well into adulthood and throughout their lifetime. The bill now heads to the president for his signature.
“I am glad the Senate unanimously reauthorized the Autism CARES Act to promote research, education and awareness into autism spectrum disorder and other developmental disabilities,” said Enzi. “This successful program helps us better understand causes and symptoms of autism spectrum disorder and improve the lives of millions of people affected by it.”
One in 59 children nationwide have ASD, according to the latest study by the Centers for Disease Control and Prevention (CDC) released last year, a jump of 15% since the previous study was conducted in 2016 and up from one in 166 in 2005.
Autism CARES 2019 builds upon the current law, which expires in September, and shapes federal autism policy and investment in research, early detection and research to develop new treatments and therapies for those with ASD and other developmental disabilities.
The bipartisan Autism CARES 2019 affirms Congress’s commitment to individuals with autism spectrum disorder and other intellectual and developmental disabilities, and their families. In addition to reauthorizing existing federal autism programs through 2024, the legislation strengthens those programs by adding the phrase “across the lifespan” where appropriate to ensure they can address the needs of individuals with ASD and other intellectual and developmental disabilities throughout all stages of life.
Autism CARES 2019 also:
- Authorizes research under the National Institutes of Health (NIH) to address the entire scope of autism spectrum disorder;
- Designates regional centers of excellence for ASD research and epidemiology;
- Directs activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection;
- Authorizes $23.1 million to the CDC for developmental disability surveillance and research;
- Authorizes $50.6 million to the Health Resources and Services Administration (HRSA) for education, early detection, and intervention, and allows HRSA to prioritize new grant applicants in rural or underserved areas;
- Authorizes $296 million for the National Institutes of Health (NIH) for research;
- Requires the Department of Health and Human Services (HHS) to provide a report to Congress on the health and well-being of individuals of all ages with ASD and other developmental disabilities.