In this issue of Capitol Connection, we highlight key federal policy developments affecting the Autism and broader disability community, including ongoing budget negotiations, proposed changes to critical programs, and new legislation to support caregivers. We also share recent research and resources that underscore the importance of protecting access to services and supports. We encourage you to stay engaged and visit the Autism Society of America’s Action Center to connect with your legislators on these critical issues. 

Advocating to Protect Medicaid in Upcoming Budget Bills 

As Congress considers new federal budget bills, the Autism Society of America joined a letter with over 350 organizations in urging lawmakers not to cut or change Medicaid. Budget reconciliation is a legislative process that allows Congress to pass certain spending and tax bills with a simple majority vote, often making it easier to approve large funding changes. 

Earlier this year, Congress passed its first budget reconciliation bill (H.R. 1), which included about $1 trillion in cuts to Medicaid. Lawmakers are now discussing additional budget packages before the end of the session. Medicaid is a critical source of health care and support for many people in the disability community, including Autistic individuals. The Autism Society will continue working with partners to oppose any further cuts and to protect access to these essential services. 

FY 27 Appropriations  

Congress is developing funding bills for Fiscal Year 2027, following the Administration’s budget proposal released in April. While the proposal includes some increased funding, it also introduces major structural changes aimed at “streamlining” programs and giving states more flexibility, changes that raise serious concerns. 

The budget would eliminate several targeted programs under the Administration for Children, Families, and Communities, including UCEDDs, Projects of National Significance, and Voting Access for People with Disabilities, and shift funding into the Independent Living program. While that program would see an increase, combining funding does not guarantee that these specialized services, such as research, workforce development, and direct support, will continue. 

The Department of Education also proposes consolidating multiple IDEA programs into the main Grants to States funding stream, eliminating dedicated support for preschool programs, personnel training, technical assistance, and parent resource centers. 

Together, these changes could weaken critical supports, especially in underserved and rural communities, and increase disparities in access to services. Education Secretary McMahon and Health and Human Services Secretary Kennedy have been testifying on the Hill the last month regarding the budget proposal and actions of the last year. Please use this Action Alert to urge Congress to protect these programs and ensure continued access to the supports that people with Autism and other developmental disabilities rely on. 

Menendez Introduces CARES Hotline Act to Support Caregivers 

On April 30, Representative Rob Menendez (D-NJ-8) introduced a new piece of legislation to establish a national hotline for caregivers of individuals with developmental disabilities. The CARES Hotline Act would: 

• Launch a nationwide, toll-free 24/7 hotline with trained staff offering emotional support, crisis guidance, and referrals to mental health services  

• Connect caregivers with peers who understand their experiences for shared support and encouragement  

• Build and maintain a centralized database of caregiver resources to help people quickly find services in their communities

The Autism Society supports this legislation and will advocate for its passage.  

AARP Report Highlights Scope and Value of Family Caregiving 

A new report from AARP estimates that 59 million family caregivers in the U.S. provide 49.5 billion hours of care each year. Caregiving is also becoming more demanding. About 63% of caregivers provide support every month, averaging 27 hours per week. More than half (55%) perform medical or nursing tasks typically handled by health care professionals, reflecting the growing complexity of care. The report estimates the economic value of this care at $1.01 trillion annually, exceeding total Medicaid spending. On average, this work would be valued at about $20.41 per hour. Family and friends play a critical role in supporting individuals with disabilities and complex health needs. State-by-state data is also available through the report. 

Senate HELP Committee Minority Report on ED OCR 

A new report from the Minority Staff of the Senate Committee on Health, Education, Labor, and Pensions (HELP) examines recent changes at the U.S. Department of Education’s Office for Civil Rights (OCR) and their impact on students. 

The report finds a significant decline in OCR enforcement activity, including a sharp drop in the number of cases resolved. In 2025, OCR reached the lowest number of resolution agreements in more than a decade, with no resolutions reported in cases involving serious allegations such as sexual harassment, school discipline disparities, or the use of seclusion and restraint. 

Key findings include: 

• No resolution agreements in cases involving sexual harassment, sexual violence, racial harassment, seclusion or restraint, or discriminatory discipline, despite thousands of pending complaints  

• A 78% decrease in resolution agreements compared to the previous year  

• A nearly 79% drop in resolutions related to students with disabilities, who make up the largest share of cases  

• No resolution agreements reported in 15 states and Puerto Rico  

These trends raise concerns about access to timely and effective civil rights protections for students, including those with disabilities. 

New HCBS Advocacy Resources 

New resources highlight the importance of Medicaid Home and Community-Based Services (HCBS) and track how policy changes may impact access to care.  

This brief from the Brandeis Community Living Policy Center summarizes decades of research showing that high-quality HCBS improves outcomes for people with disabilities and older adults and can also help reduce overall health care costs. 

In addition, as states implement Medicaid policy changes and address reductions in federal investments, researchers from George Washington University and partner organizations have launched, have launched a HCBS Impacts Tracker. This tool monitors state-level policy changes and examines how they affect access to services for older adults and people with disabilities.