Milestone wins for the autism community in federal bill

Today, the hard work of advocates across the country and champions for the autism community in Congress came to fruition with the passage of a federal spending package that includes significant victories for the autism community. The Consolidated Appropriations Act, 2023, which just passed in Congress and is headed to the President’s desk for his signature, contains a number of priorities that Autism Speaks has been urging Congress to pass. This includes the first increase in a decade to expand the Autism and Developmental Disabilities Monitoring (ADDM) Network as well as an increase in funding to provide more training opportunities to future health professionals to help improve access to high quality health care for autistic individuals and others with developmental disabilities. The bill also includes a significant call by Congress to the National Institutes of Health (NIH) to increase its investment in autism research and address key gaps in research, including issues across the lifespan, aging and autism, and health disparities.

“The inclusion of these priorities demonstrates the momentum that has been building within Congress to significantly enhance the federal commitment to address challenges faced by the autism community,” said Senior Vice President of Advocacy Stuart Spielman. “We are very grateful to the members of Congress who heard their constituents’ message loud and clear – that an urgent, increased and sustained commitment to autism research and services is absolutely imperative.”

Most notably, the National Center on Birth Defects and Developmental Disabilities received a $5 million increase for autism activities (for a total of $28.1 million) marking the first time in a decade that they have received an increase in funding for autism-related work. This will enable an expansion of the CDC’s ADDM Network which works to understand the number and characteristics of people with autism, racial and ethnic disparities and access to services for people with ASD and other developmental disabilities living in different areas of the United States. The ADDM Network will be able to add to their existing 11 sites which conduct prevalence studies as well as continue and expand monitoring of outcomes for young adults transitioning from school-age to adult services.

The bill also calls on the NIH to invest part of its overall $2.5 billion funding increase to advance research on racial, ethnic and socioeconomic health disparities within the autism community, access to services across the lifespan and implementation-focused research that targets caregiver-mediated interventions, including caregiver skills training. Doing so would help align the federal investment in autism with the Interagency Autism Coordinating Committee’s (IACC) recommendations for addressing the needs of the US autism population. In addition, the bill includes a new provision calling on the NIH to prospectively indicate how they are working to invest in autism research in the coming year.

Additional funds were allocated for continued autism research, health equity initiatives and training of healthcare professionals. The Department of Defense received $15 million to continue its Autism Research Program, and the Health Resource and Services Administration (HRSA) received a $2 million increase (for a total of $56.34 million) for autism and developmental disorder activities. This will provide additional resources to HRSA’s Leadership Education and Neurodevelopmental and Related Disabilities (LEND) program, which delivers vital training to interdisciplinary professionals to screen, diagnose and provide evidence-based interventions for autistic individuals. For the first time, Congress also specifically supported ongoing work at the National Institute on Aging to understand how ASD affects the aging process and to develop tools for identifying ASD and related mental health needs and evidence-based services.

Autism Speaks is thankful for the leadership of Autism Caucus Co-Chairs Reps. Chris Smith (R-NJ-4) and Mike Doyle (D-PA-18) as well as Senators Amy Klobuchar (D-MN), Thom Tillis (R-NC) and Robert Menendez (D-NJ) who have championed these efforts for years. Thanks to their bipartisan collaboration as well as the work of advocates across the country who collectively sent over 1,500 letters to Congress and our Volunteer Advocacy Ambassadors who held over 450 meetings in support of this year’s policy priorities, we celebrate this milestone in advancing not only autism research programs but additional government initiatives that benefit people with autism. Additional priorities incorporated in the bill include:

• Increasing lifespan services: The Money Follows the Person program was extended for five years. This Medicaid program provides states funding to enhance access to home and community-based services (HCBS) and give people needing long-term support services more choice about where they live and receive care. The bill also urges the Departments of Labor and Health and Human Services to support the expansion of the HCBS workforce.
• Advancing employment opportunities: The bill includes a $230.6 million increase for vocational rehabilitation programs which help individuals with disabilities, including autism, receive the training and resources needed to obtain competitive, integrated employment.
• Enhancing the delivery of mental healthcare: The bill includes $20 million for mental health crisis response as well as $10 million in grants to states for implementing federal mental health parity laws. The bill also eliminates the ability of nonfederal governmental plans to opt out of mental health parity requirements as well as a number of other provisions that were included in S. 4170, the Mental Health Reform Reauthorization Act of 2022, which Autism Speaks endorsed.
• Continuing safety resources: $3 million is dedicated to Kevin and Avonte’s Law grants which are awarded to law enforcement agencies and community organizations across the country to promote efforts to protect children with autism or other developmental disabilities who may wander away from safety. 
• Improving special education services: The bill includes a $904 million increase for the Individuals with Disabilities Education Act (IDEA), which includes funding for IDEA Part B grants to states, and an increase of $20 million for special education personnel preparation.
• Expanding financial resources: The bill includes the passage of the ABLE Age Adjustment which raises the age threshold for onset of a disability needed for accessing a tax-favored ABLE account from 26 years of age to 46. This change allows more adults with disabilities to open ABLE accounts to save for long-term care without losing federal benefits.