On May 22, the U.S. House of Representatives narrowly approved comprehensive legislation (H.R. 1) that includes significant changes and cuts to Medicaid, a federal program that many individuals with SMA rely on for healthcare, caregiving, and other services. The U.S. Senate is expected to consider the legislation in June, following the Memorial Day Congressional recess. Learn more about Medicaid, the proposed changes, and how you can educate your Senators about why Medicaid matters for people with SMA.
Why Medicaid is Important to People with SMA
About 48 percent of children with SMA and 50 percent of adults with SMA are enrolled in Medicaid, according to Cure SMA's newest State of SMA report. Individuals with SMA utilize Medicaid to access life-saving treatments, medical devices, and in-home caregiving services. Medicaid is the primary payer of long-term care services, including in-home caregiving. About 85% of adults with SMA report having one or more caregivers. Medicaid-funded caregivers or personal care attendants (PCAs) assist individuals with SMA with activities of daily living. One adult with SMA said, "I rely on PCAs for bathing, transfers, grooming, cooking, dressing, transportation, and bathroom breaks.”
People with SMA Already Face Restrictions Under Current Medicaid Funding Levels
Cure SMA's national caregiving report found that state Medicaid agencies typically approve fewer caregiving hours for an individual with SMA than what that person requires to maintain their health and independence. An adult with SMA said, “The 42 hours a week of caregiving hours I receive through the state is not nearly enough for what I need, and it’s why I still live at home with my parents.” In addition, individuals with SMA report facing barriers or insufficient coverage for treatments, durable medical equipment, and physical and occupational therapy.
What will $700 Million Less in Federal Medicaid Funding Mean for People with SMA?
The Congressional Budget Office (CBO) estimates that H.R. 1 will mean "$698 billion less in federal subsidies" to states due to the legislation's proposed Medicaid changes. State Medicaid agencies already face financial challenges in meeting today's needs of people with SMA and other disabilities. To address cuts in federal resources, states may be forced to "limit the scope or amount of optional benefits," as noted by the CBO, and as experienced by SMA families in Indiana due to a 2023 state Medicaid shortfall. Caregiving services are not optional for people with SMA, who need daily assistance to maintain their health, independence, and community living. Federal Medicaid cuts, regardless of their intended purpose, could lead to additional restrictions for people with SMA.
SMA Community: Your Voice is Incredibly Important to the Process
H.R. 1 was narrowly approved in the U.S. House. The legislation now goes to the U.S. Senate for consideration. Make sure your Senators fully understand how Medicaid is essential in the lives of people with SMA. Make sure they are aware of the challenges individuals with SMA already face in receiving adequate Medicaid coverage. Make sure your concerns are heard before they vote on this legislation. It's not too late!