Overview
Medicaid is a government program that provides free or low-cost health insurance to eligible individuals, including individuals with Down syndrome. It covers essential medical services like doctor visits, hospital stays, and prescriptions. It is also the predominant payer of Home and Community-Based Services (HCBS) and can be used to cover necessary therapies and interventions provided in a school setting for students with disabilities, such as speech therapy, occupational therapy, and more.
Medicaid is a critical lifeline to the vast majority of individuals with Down syndrome and their families. According to a 2023 report from Boston University, Medicaid is the primary insurance for the majority of individuals with Down syndrome.
NDSS supports protecting, strengthening, and expanding Medicaid so that it can better serve individuals with Down syndrome and the broader disability community. We oppose any attempts to weaken Medicaid or impose additional barriers to coverage and service delivery.
For more information, please contact our team at policy@ndss.org. To learn more about NDSS grassroots advocacy initiatives, please visit our DS-Ambassador® page.
Federal Medicaid Updates
On July 3, 2025, the United States Congress passed the One Big Beautiful Bill Act. The bill, passed by Congress using the budget reconciliation process, was signed into law on July 4, 2025.
The law makes major changes to the Medicaid program that may affect coverage and access for individuals with Down syndrome and other disabilities and caregivers. These changes include limits on state-directed payments (SDPs) and provider taxes, new Medicaid work requirements, and a reduction in retroactive coverage for new Medicaid enrollees.
Please check back soon for a more detailed analysis of the law and its impact on the Down syndrome community.
Partner Resources
- The Arc of the United States Medicaid Can’t Wait Webpage
- ASAN’s A Self-Advocate's Guide to Medicaid
- KFF’s Medicaid State Fact Sheets
- Modern Medicaid Alliance State Data Dashboard
- The Bogg’s Center Sharing Your Story: A Guide to Medicaid Advocacy
- State Medicaid Program Names
- National Down Syndrome Congress Medicaid for All Video