IACC meeting focuses on support for caregivers

The Interagency Autism Coordinating Committee (IACC) is a federal advisory committee authorized by the Autism CARES Act that coordinates federal efforts and provides recommendations on issues related to autism spectrum disorder. It holds quarterly meetings which are open to the public to discuss committee business, agency updates and issues related to autism research and services.

Recap of the July IACC meeting

The July 10, 2024, IACC meeting focused on the topic of family caregivers in addition to highlighting collaboration across federal agencies. 

A caregiver perspective, from Tom Frazier, PhD, IACC Committee Member & Autism Speaks National Board Chairman

“As a parent and caregiver to a young adult with autism, I know firsthand the challenge that comes with navigating a network of autism services, providing day-to-day care and planning for the future support needs of a loved one. This meeting’s discussion highlighted the critical role family caregivers play throughout their loved one’s life and the gaps that exist in adequately supporting them. It also raised the need for additional research that can drive the design of policy and program solutions that can alleviate caregiver responsibilities. For example, as we advocate to enhance home and community-based services and address the support professional crisis, research plays a critical role in projecting the future of caregiving, providing information on workforce characteristics, and identifying best practices for how professionals work hand-in-hand with caregivers.”

Autism Speaks has long recognized the significant role of caregivers in providing unpaid support for both children and adults with autism across their lifespan so they can live safe, healthy and fulfilling lives. In taking on these responsibilities, family caregivers unfortunately also experience disproportionate physical, emotional and financial strain and social isolation. That is why, our advocacy team works to increase access to services that aid in caregiving responsibilities, such as support of direct support professionals; expand resources like caregiver skills training through the Autism Family Caregivers Act; and ensure the mental and physical well-being of caregivers is prioritized.

Autism Speaks is proud to have recently joined in coalition with the Rosalynn Carter Institute and 167 stakeholder organizations in calling for the creation of a new federal Office of Caregiver Health within the Department of Health and Human Services. The new office’s mission would be to advance the health and well-being of family caregivers across the nation through coordinating federal services, support, research, and education. It would build upon the impact of legislative efforts, like the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act, by accelerating cross-sector implementation of federal commitments to caregivers. The new office would support the many efforts and needs addressed by the IACC’s stakeholders during this meeting.

Federal Interagency Workgroup on Autism Presentations

The morning panel discussion highlighted the breadth of autism programs across the federal government that are working to advance research discoveries, improve and expand services for people with autism across the lifespan, and drive private-public partnerships. Representatives from the following agencies presented: 

• Health Resources and Services Administration highlighted activities authorized by the Autism CARES Act, including the LEND programs and developmental-behavioral pediatric training programs;
• Congressionally Directed Medical Research Programs at the U.S. Department of Defense referenced the role of self-advocates and caregivers serving as consumer reviewers of research proposals;
• Office of Head Start emphasized the importance of early diagnosis and intervention;
• Indian Health Service highlighted tele-behavioral health services;
• Administration for Strategic Preparedness and Response (ASPR) addressed the autism community’s unique needs are considered responding to disasters and public health emergencies;
• Federal Emergency Management Agency (FEMA) emphasized the role of data and community engagement.

IACC committee business

The following resources encompass extensive White House, federal committee, federal department and agency, organizational and legislative updates shared during the meeting.

• National Autism Coordinator Update
• Round Robin Updates from federal agencies, public committee members (including Autism Speaks), and community organizations.

The Committee is reviewing nominations for the IACC’s 2024 Summary of Advances.

Perspectives on family caregiving panel

Representatives from the Administration for Community Living presented on resources for family caregiving and provided data on the state of caregiving in the United States. Of particular relevance to Autism Speaks’ previous advocacy efforts in support of the RAISE Family Caregivers Act that was enacted in 2018, they provided an update on the impact of the law which established the RAISE Family Caregivers Act Advisory Council, requires a report to Congress on caregiving and developed a National Strategy to Support Family Caregivers for the autism community. Two university researchers then presented on the experiences of parental caregivers of adults with autism as well as the intersection of race and autism. They recognized how caregiving demands vary based on the unique needs and abilities of the individual with autism and pointed to solutions that involve culturally relevant research, support service navigation and the need to plan for the future by caregivers.

Panel discussion: Family caregiving

Panelists offered the perspectives of parents, grandparents, self-advocates, and siblings by sharing their lived experiences. Their personal examples shed light on the diversity of needs, depicting the needs and demands of a caregiver as unique as the autistic individuals for which they are caring. The speakers highlighted the interconnectedness of access, affordability and quality of services and caregiver supports. 

Public comments

The public is invited to submit written or oral comments to the committee on autism topics they believe deserve attention. While submitted comments range in focus, the meeting’s oral comments and discussion raised particular attention to the role, impact and caregiving responsibilities of siblings to those with autism.