The Politics of Autism includes an extensive discussion of insurance and Medicaid services for adults with intellectual and developmental disabilities. Home and Community-Based Services (HCBS) are particularly important. Congress is about to slash Medicaid spending.
To understand the devastating impact of these Medicaid cuts on people with IDD, including those with autism, it’s crucial to recognize the distinction between mandatory and non-mandatory Medicaid services.
Mandatory services, which are required by law, consist of healthcare services like doctor visits, medical care in hospitals, and long-term services and supports that are provided in nursing homes or institutions. Non-mandatory services, which are optional and vary by state, consist of dental care, some therapies, and most home- and community-based services (HCBS) provided through Medicaid waiver programs.
Many non-mandatory services are lifelines to individuals with IDD and autism to remain in their communities, allowing them to live safely and with dignity in their own homes and to engage meaningfully in lives of their choosing. Although they are labeled “non-mandatory,” these supports are absolutely critical for people with IDD and their families. Yet, because they are optional, non-mandatory services are most likely to be affected by any cuts to Medicaid. Mandatory services, meanwhile, are required by law and thus less likely to be affected by cuts to Medicaid. As a result, families may have no other options besides institutional care.
Additionally, many individuals with IDD and autism gained access to healthcare through the Affordable Care Act’s option for states to expand Medicaid coverage. But proposed cuts to Medicaid in the reconciliation bill would be more likely to affect those with Medicaid expansion coverage because the federal government covers 90% of costs for Medicaid expansion compared to 50% for traditional Medicaid. This would hit especially hard in states like Massachusetts where long waitlists already limit access to home- and community-based care.
Nationally, the best available data indicate over 700,000 people across 38 states are on waiting lists for home- and community-based care. Any cuts to Medicaid would mean that even fewer people with IDD and autism receive the services they need.
