In The Politics of Autism, I write:
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.
Today, Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA) introduced the bipartisan Autism CARES Act of 2019 in the House to reauthorize federal programs and activities that assist children, adults and families with Autism.
The bill, HR 1058, is supported by a widespread coalition of autism and disability advocate organizations, including Autism Speaks, Autism Society of America, Association of University Centers on Disabilities, American Academy of Pediatrics, and Autism NJ. A companion bill will be introduced in the Senate by Sens. Bob Menendez (D-NJ) and Mike Enzi (R-WY).
“Our new legislation will reauthorize vital federal research on earlier interventions for children with autism and expands funding for critical research, education, housing, and other programs that assist the countless children and adults on the spectrum, and their families,” Smith said. “The bill will also help ensure that the estimated 50,000 persons with autism each year who ‘age out’ of critical assistance programs and enter adulthood are supported, as many individuals and communities are unprepared for this transition.”
“We’ve made significant progress over the last 20 years, but we are still far behind where we would like to be – and where individuals and families need us to be,” Doyle said. “The legislation we’re introducing today reauthorizes the federal government’s existing efforts, but it also increases and expands those efforts to cover underserved areas and ensure that they address individuals’ needs throughout their lives. We must continue this critical work, and I look forward to working with colleagues and stakeholders to move this bill through the legislative process.”
The Autism CARES Act of 2019, HR 1058, is a reauthorization of Smith and Doyle’s Autism CARES Act of 2014 (P.L. 113-157).
HR 1058 will 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 will go to developmental disability surveillance and research; at HRSA, the funding will cover education, early detection and intervention; at NIH, the funding will 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.