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Capitol Correspondence - 02.25.19

Congress Introduces Bill to Renew Funding for Autism Research

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ANCOR is sharing this article by app.com on the Autism CARES Act because the Autism CARES Act is up for renewal this year and ANCOR will be advocating Congress in support of this legislation. We support this bill given the increasing amount of autism diagnoses in the United States – additional research funding will increase awareness of autism, which in turn will assist the community and providers of intellectual/developmental disability (I/DD) supports in better supporting individuals with autism. However, ANCOR is also advocating for modifications to this bill so that self-advocates can have greater representation on the Interagency Autism Coordination Committee (IACC) created by the legislation. Specifically, ANCOR is advocating for up to 15 percent of the IACC to be self-advocates – currently, there are 2 self-advocates on the IACC.

As shared by app.com:

“The bipartisan bill, named the Autism CARES Act of 2019 (HR 1058) is sponsored by Republican Chris Smith of New Jersey, whose 4th Congressional district stretches across Monmouth, Ocean and Mercer counties, and Democrat Mike Doyle of Pennsylvania.

A Senate version of the bill was introduced Friday by New Jersey’s Robert Menendez, a Democrat, and Mike Enzi, a Republican from Wyoming.

[…]

According to a news release from Menendez, Autism CARES 2019 would:

  • Authorize research under the National Institute of Health to address the entire scope of autism spectrum disorder.
  • Designate regional centers of excellence for autism spectrum disorder research and epidemiology.
  • Direct activities to increase public awareness of autism, improve the ability of health providers to use evidence-based interventions, and increase early screening and detection.
  • Increase funding to $23.1 million to the CDC for developmental disability surveillance and research.
  • Increase funding to $50.6 million to the Health Resources and Services Administration for education, early detection and intervention, with priority for new grants given to applicants in rural or under-served areas.
  • Require the Department of Health and Human Services to provide a report to Congress on the health and well-being of individuals of all ages with autism spectrum disorder and other developmental disabilities.

Crucially, for those with autism who are entering adulthood like Tim Rohrer, it amends sections of the Public Health Service Act to reflect the need for research, surveillance, education, detection, and intervention for individuals with autism spectrum disorder of all ages — not just children.”

Members interested in learning more about this legislation and autism supports in general might be interested in these recent articles by Disability Scoop, The Atlantic, and local news outlet NJTV Online.

Note that the NJTV article follows a site visit by Senator Menendez, one of the original sponsors of the Autism CARES Act ANCOR members interested in generating activities and media such as this one on key I/DD topics will want to stay tuned to future updates from the ANCOR Grassroots Work Group.