SDBP Legislative Advocacy Opportunities

SDBP Legislative Advocacy Opportunities & Guidance

SDBP is committed to supporting our members in engaging in advocacy related to legislation and other efforts intended to improve access to care and quality of life for individuals with intellectual and developmental disabilities (IDDs). On this page, you will find current legislative advocacy opportunities as well as educational information to support you in your advocacy efforts.

For more information about Advocacy Committee activities, please contact the Advocacy Committee Co-Chairs, Jennifer Cervantes (jcervant@bcm.edu) and Hannah Perrin (Hannah.Perrin@ucsf.edu).

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HEADs UP ACT of 2023

The HEADs UP Act is a bipartisan bill re-introduced in the 118th Congress on May 16, 2023. This bill was previously introduced in the 117th Congress, but did not move out of the subcommittee. The bill is currently in the House Energy and Commerce Subcommittee on Health for review. Our hope is that with your support and advocacy efforts, this bill will move to the next phase of the legislative process.

What would the HEADs UP Act do?

• Would designate people with intellectual and developmental disabilities (I/DD) as a “Special Medically Underserved Population,” which would increase access for individuals with IDD to more than 25 federal program and agencies.
• Would increase access to loan repayment and training programs for providers who work with individuals with IDD.
• Would provide incentives for physicians to treat this population by increasing reimbursement rates for services delivered.
• Would authorize the Department of Health and Human Services to award grants to health centers that provide services for individuals with IDD.
• Would potentially increase research due to preference given to federal research studying special medically underserved populations.

Other Resources:

• HEADs UP Act bill draft
• Population and cost analysis
• MUP Policy Brief

WAYS YOU CAN HELP:

• Ask your Congressional Representative to co-sponsor the HEADs UP Act (HR 3380).
• Ask your Senators to introduce a HEADs UP Act companion bill in the US Senate.
• Ask your Governor to request a Governor’s Exceptional Medically Underserved Population designation in your state from Health and Human Services (HHS).
• Write a Letter to the Editor of your local newspaper sharing your experiences with healthcare barriers and how they affect you and your patients/families.

CLICK HERE for a 1-page leave-behind that you can provide to your legislators on this specific bill.

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AUTISM CARES ACT of 2024

The Autism CARES (Autism Collaboration, Accountability, Research, Education, and Support) Act is a bipartisan piece of legislation that comes up for re-authorization approximately every 5 years.  Since the Autism CARES Act was initially passed in 2006, it has been considered a landmark piece of legislation for the disability community. Federal initiatives and funding under the Autism CARES Act have not only supported training programs and increased scientific knowledge related to autism and other developmental disabilities, but have also led to direct improvements in the quality of life of those affected. The Autism CARES Act of 2024 would build on the law’s current benefits by providing $2 billion over the next five years in authorized funding to enhance autism research, data collection, and healthcare training.

What does the Autism CARES Act provide?

• More personalized interventions and services through research.
• Training of future healthcare professionals to ensure quality, including funding LEND and DBP training programs.
• Support for pediatric training programs focused on developmental and behavioral challenges.
• Translation of research into clinical practice and valuable resources or toolkits for families.
• Sustaining numerous other initiatives designed to meet the diverse needs of people with autism across all ages.
• Reauthorization of the Interagency Autism Coordinating Committee (IACC) and other programs through September 2029.

New provisions to the Autism CARES Act:

• Encourages research across the life span with a new emphasis on autism and aging.
• Calls for further efforts to increase inclusivity in research in regards to physical safety and well-being.
• Requires a report to identify and develop a strategy for expanding the DBP workforce.
• Creates an Autism Intervention Research Network for Communication Needs (AIR-C) to address supporting those non-speaking individuals or those with alternative communication needs.
• Requires Health and Human Services to report to Congress on the mental health of people with autism.
• Increases the number of NIH Autism Center of Excellence.
• Requires a professional judgment budget that would provide a strategic direction for autism research.

Other Resources:

• AUCD toolkit
• AAP Advocacy Action Center
• HRSA Maternal & Child Health Autism CARES Act summary

WAYS YOU CAN HELP:

In mid September, the House passed the Autism CARES Act by a roll call vote of 402-12. However, there is still work to be done in order to ensure its full passage before the September 30, 2024 deadline!

• Ask your Senator to expedite the passing of the Autism CARES Act on the Senate side to ensure that it reaches the President’s desk prior to the expiration deadline of September 30, 2024!

CLICK HERE for a 1-page leave behind that you can provide to your legislators on this specific bill.

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ADVOCACY COMMITTEE TIPS AND RESOURCES!