H.R. 1058: The Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act of 2019, or the Autism CARES Act of 2019, was signed into law by the President on Monday (9/30/2019). The CARES Act reauthorizes and expands the provisions earlier introduced in the Combating Autism Act of 2006.
What The Autism CARES Act Means For ASD Patients
The Autism CARES Act ensures support for research on autism spectrum disorder (ASD) and enhances programs relating to autism. The latest version of the Act renews the legislation for another five years, tagging $369M annually for ASD-efforts through 2024.
The appropriation of funds authorizes agencies to spend $23.1M each year for developmental disabilities surveillance and research programs by the Centers for Disease Control and Prevention (CDC); $50.6M each year for autism education, early detection, and intervention by the Health Resources and Services Administration (HRSA); and $296M each year for the Interagency Autism Coordinating Committee (IACC) and certain other programs by the National Institutes of Health (NIH).
The bill expands the IACC, a federal advisory group, from two to three IACC members who are self-advocates, parents or legal guardians and advocacy/service organizations.
Changes to Law Designed to Help Assist All ASD Patients
Autism is a lifelong neurological disorder, and adults with autism need services, too. One of the bill’s sponsors, Rep. Chris Smith (R-NJ) told ABC30 news that the Act expands government programs to include older persons with autism “who were-and are-often misdiagnosed, under-diagnosed and overlooked.” Changes in the law address the problem of “aging out,” and emphasizes that causes, diagnosis, detection, prevention, and treatment of ASD must be available throughout the lifespan of a person with autism.
Drexel University reports that given the population estimate and prevalence rates, approximately 70,700 to 111,600 youth on the autism spectrum turn 18 years old each year. This adds up to between 707,000 and 1,116,000 youth on the autism spectrum aging out over the next decade.
The Autism CARES Act is a hard-won victory borne out of the sweat, tears, and dedication of many politicians, advocates, healthcare professionals, and families dedicated to the ASD community.