Autism Cares Act Amended in House Energy and Commerce Committee

Written By Jill Escher, President

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.

Jill Escher, President

Jill Escher is president of the National Council on Severe Autism and the mother of two children with nonverbal forms of autism. Through the Escher Fund for Autism she promotes and funds research on the genetic toxicology of autism and related neurodevelopmental conditions, and she has served on the governing council of the Environmental Mutagenesis and Genomics Society, where she co-chairs its Germ Cell and Heritable Effects special interest group. She was president of Autism Society San Francisco Bay Area from 2013 to 2019 and, through her family business, Claradon Properties, provides housing to adults with developmental disabilities in the Bay Area. See more of her work at jillescher.com.

https://www.jillescher.com/
Previous

UCSF and UCTV Platform Autism Pseudo-science
Next

A Major Victory for Disability Housing — and Choice — in Tennessee