National Council on Severe Autism Commends Progress on the Autism CARES Act
Washington, D.C. – The House Energy and Commerce Committee amended the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act (H.R. 7213) with expanded recognition of individuals with profound autism. This step continues the progress started in the House Subcommittee on Health last month, which added: “reflects the entire population of individuals with autism spectrum disorder, including the full range of cognitive, communicative, behavioral, and adaptive functioning, as well as co-occurring conditions and needs for support and services.” The latest amendment adds “including care necessary for physical safety.”
National Council on Severe Autism (NCSA) extends our sincere gratitude to Chairwoman Cathy McMorris Rogers (R-WA), Ranking Member Frank Pallone (D-NJ), and original bill sponsor Congressman Chris Smith (R-NJ) for their attention to our recommendations aimed to end discrimination of the profound autism community. We also thank all committee and subcommittee members who met with advocates of the NCSA National Grassroots Network, Autism Science Foundation, and Profound Autism Alliance to hear the lived experiences and unmet needs of families impacted by profound autism.
Since the last reauthorization in 2019, new data and scientific discoveries have altered the landscape for the autism community, and legislation regarding autism must reflect current realities. The CDC estimates 27% of individuals with autism spectrum disorder meet criteria for profound autism – non-verbal, minimally verbal, having an intelligence quotient below 50 – significantly increasing the service complexity and costs for care. A substantial subset of this community experiences harmful behavior symptoms such as self-injury, aggression, elopement, and PICA. The amended language recognizes the need for the National Institutes of Health (NIH) to direct research and activities with intentional inclusion of the profound autism community.
We look forward to continuing collaborative efforts with our colleagues and members of Congress to improve the quality of life and health outcomes for the individuals and families impacted by profound cognitive and communicative impairments and co-occurring conditions requiring very substantial supports and services. Together, we can end discrimination of profound autism.