What is the Autism CARES Act of 2019 and how does it affect me?

What is the Autism CARES Act and what does it mean to me?

Author: Attorney Lonnie Roach

On Wednesday, July 24, 2019, the U.S. House of Representatives passed its version of the Autism Collaboration Accountability, Research, Education and Support Act (Autism CARES Act) by a voice vote.

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On July 24, 2019, the U.S. House of Representatives passed its version of the Autism CARES Act to provide funds for the needs of people with autism.

H.R. 1058 was introduced on February 7, 2019 by Representative Christopher H. Smith of New Jersey to extend funding of the current Autism CARES Act which is set to expire on September 30, 2019.

The intention of Congress is to provide funds to support the needs of people with autism and adults on the autism spectrum disorder (ASD). ASD is a neurological and developmental disorder, beginning in childhood and continuing through adulthood. It is considered a spectrum disorder because individuals with ASD can have a variety of symptoms.

The original Autism CARES act became law in 2006 and was known as the Combating Autism Act.

The act was reauthorized first in 2011 and then again in 2014 when it was renamed. The Autism CARES Act is the main source of funding for autism research, training and services, allocating more than $3.1 billion to the National Institutes of Health, Centers for Disease Control, and the Health Resources and Services Administration for autism.

Among its many benefits, the Autism CARES Act provides support for:

•   Training of medical providers in detection and monitoring of autism;
•    Development of treatments for medical conditions associated with autism;
•   The Interagency Autism Coordinating Committee IACC)’
•   Career training programs and research grants in the field of autism; and
•   Autism prevalence monitoring.

Because of the Autism CARES Act, there is an increased understanding of the biological causes of autism and researchers have been able to identify genes and possible medications associated with autism.

Continuing education programs and community training events on ASD have been established. The 2019 Autism CARES Act would authorize the government to spend $369 million annually on autism research, programs and services and funding would continue through 2024.

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The legislation contains several key actions to note.

Perhaps the most important is the bill’s emphasis on providing research, monitoring and services to benefit people with autism “across the lifespan” of the individual. This phrase, “across the lifespan,” is employed throughout the bill, recognizing that autism is a disorder that affects individuals from childhood through adulthood and that adults as well as children with autism will need continued support and services.

The bill would also increase the number of self-advocates, parents, and autism group representatives on the Interagency Autism Coordinating Committee (IACC) from two to three persons each.

The IACC is a federal autism advisory panel with the Department of Health and Human Services that monitors research and associated services and activities in all federal departments and agencies.

In accordance with the Act, the Department of Health and Human Services would be required to report to Congress on the progress of activities related to autism and other developmental disabilities and the health and wellbeing of individuals with autism.

Additionally, the legislation directs the Health Services and Resources Administration, the primary federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable, to prioritize grants for developmental-behavioral pediatricians in areas that are underserved.

In 2018 the Centers for Disease Control determined that approximately 1 in 59 children is diagnosed with an autism spectrum disorder.

The reauthorization of the Autism CARES Act is vital to continue research programs and high-quality services for individuals with autism. H.R. 1058 has now been passed to the U.S. Senate and will be introduced by Senators Bob Menendez of New Jersey and Mike Enzi of Wyoming as S.B. 427. If you or someone you know has ASD, contact your Senators today and urge them to support this important legislation.