In The Politics of Autism, I discuss the congressional role in the issue.
A July 29 release from Autism Speaks:
Today, the U.S. House of Representatives passed a package of annual spending bills that includes several important priorities that Autism Speaks has been fighting to advance. In the bill, the House specifically calls on the National Institutes of Health (NIH) to increase investment in research focused on addressing health equity and racial/ethnic disparities in the autism community, challenges faced by autistic individuals across the lifespan and co-occurring medical conditions experienced by autistic individuals. It also calls for more investment in research focused on the development of evidenced-based services, new screening tools and interventions.
The overall investment in autism research still lags behind the recommendations of the Interagency Autism Coordinating Committee (IACC). This House-passed language, which accompanies a large increase in the NIH budget, provides a clear message to the NIH that they should invest in research according to the IACC budget recommendations and address the key gaps in research that have been identified.
In addition, for the first time in a decade, the House increased funding for autism-related activities at the Centers for Disease Control and Prevention (CDC), thanks to a bipartisan $10 million amendment that was offered by Autism Caucus Co-Chairs Reps. Mike Doyle and Chris Smith. This funding will allow CDC to expand their work in understanding the prevalence of autism, racial/ethnic disparities, access to services and transition to adulthood. The bill also includes a $4 million increase for Autism and Developmental Disorders activities at the Health Resources and Services Administration (HRSA), which will provide additional resources to the Leadership Education and Neurodevelopmental and Related Disabilities (LEND) program. The LEND program provides vital training to interdisciplinary professionals to screen, diagnose and provide evidence-based interventions for autistic individuals. Additional important provisions included in the bill are detailed in the section below.
The inclusion of these priorities reflects the momentum that has been building in Congress to address these important issues, which was illustrated by a historic number of House members signing on to a letter in support of autism research funding in April.
The Senate has not commenced the annual spending process to this point, so the House passage of this bill represents the first step in the process. Autism Speaks will continue to advocate for these key priorities as Congress moves forward with spending decisions.
Highlights from H.R. 4502 - Labor, Health and Human Services, Education, Agriculture, Rural Development, Energy and Water Development, Financial Services and General Government, Interior, Environment, Military Construction, Veterans Affairs, Transportation, and Housing and Urban Development Appropriations Act, 2022:
- Addressing disparities, lifespan issues and co-occurring conditions: As mentioned above, along with increasing overall funding for the National Institutes of Health (NIH), the bill emphasizes the importance of the NIH investing in autism research in accordance with the recommendations of the Interagency Autism Coordinating Committee and to address key areas such as racial/ethnic disparities, lifespan issues and co-occurring health conditions. This language is located on page 138 of the House Appropriations Committee report on the bill.
- $33.1 million for the autism-related activities at the CDC (a $10 million increase): A $10 million increase to the Centers for Disease Control and Prevention’s autism-related activities was secured through an amendment offered by Autism Caucus Co-Chairs, Reps. Mike Doyle and Chris Smith. This funding will allow the CDC to expand the number of sites in the current ADDM Network to help strengthen work in understanding the prevalence of autism, racial/ethnic disparities, access to services and transition to adulthood, which help inform policy decisions.
- $57.3 mil for Autism and Developmental Disorders activities at HRSA (a $4 million increase): In addition to funding enhancing the efforts of the LEND program, as mentioned above, the Health Resource and Services Administration’s efforts include funding for research and programs to improve the health and well-being of autistic individuals and others with developmental disabilities. They also advance best practices for early identification and treatment of autism and related developmental disabilities.
- New HHS study: The bill requires a new study by the Secretary of the Department of Health and Human Services “to identify the supportive services that are most beneficial to improved outcomes for autism patients, review existing coverage policies for these services, and provide a report on its interim findings.”
- New CDC programming: The bill creates a new drowning prevention program at the CDC, with a direction to create specific initiatives within that program targeted to prevent autistic children from drowning.
- $15.5 billion for IDEA grants: This funding is for the Individuals with Disabilities Education Act (IDEA) Part B grants to states. It represents a $2.6 billion increase over FY2020 funding levels.