Seeking Medical Care and Responding to the Challenges of H.R.1

The H.R. 1 reconciliation bill has created new barriers to accessing and financing medical care for people with intellectual and developmental disabilities (I/DD). Federal and state-level Medicaid cuts are making it harder for people with I/DD to secure coverage for essential health needs, leading to delayed appointments and difficulty obtaining appropriate care.

According to Health Affairs, the Congressional Budget Office estimates that H.R. 1 will reduce Medicaid spending by close to $1 trillion over the next 10 years. As a result, Home – and Community-based Services (HCBS) will experience a reduction in funds allocated to program management. HCBS cuts would affect at least 9.1 million Medicaid-covered individuals with disabilities, including people with I/DD.

Responding to the challenges created by H.R. 1 requires coordinated health advocacy, a clear understanding of how Medicaid and workforce pressures affect people with I/DD, and sustained efforts to improve health care policy and access.

The Crisis in the Workforce

One way these policy changes become visible is through the health care and direct support workforce. When funding pressures reduce staffing capacity, people with I/DD often experience longer wait times, fewer available providers, and reduced continuity of care.

The current health care policy environment in the United States has contributed to workforce shortages. As a result, people with I/DD are at risk for unmet health needs due to limitations in HCBS services and programmatic funding.

The most recent ANCOR report, The State of America’s Direct Support Workforce Crisis 2026, highlights the scale of the staffing shortage:

• 55 percent of respondents reported turning away new referrals because they did not have enough staff to support additional people.
• 29 percent of respondents reported discontinuing programs and services because staffing challenges made those supports unsustainable.

With limited programmatic funding, Direct Support Providers face barriers to building stable work environments that allow staff to support people with I/DD effectively. In response, individuals concerned about I/DD health care are encouraged to advocate for sustainable funding, support policies that strengthen the direct support workforce, and seek health education through I/DD provider groups.

The Resilient Response Rooted in Advocacy

Advocacy begins with listening to people with I/DD about the care and support they need. Families, Direct Support Professionals, and providers can document when someone cannot find a clinician, secure an appointment, or receive an authorized service. Sharing these experiences with state Medicaid agencies and lawmakers helps show how funding and workforce decisions affect daily life.

Provider organizations can also speak up for reimbursement rates that support a stable workforce and protect access to home- and community-based services. As states prepare to implement H.R. 1, advocates can press for clear, accessible notices and reliable processes that identify people who qualify for exemptions from new Medicaid requirements. Health education remains essential: supporters who understand a person’s health needs are better prepared to communicate concerns and help them navigate care.

Mahima Dave is the Grants and Research Coordinator at IntellectAbility.