On May 14, a key U.S. House committee approved a proposal that, if finalized, would greatly reduce federal funding to Medicaid. Below is a high-level summary of the proposed Medicaid changes and what it could mean for individuals with spinal muscular atrophy (SMA) and their families. 

WHAT’S NOT INCLUDED: Medicaid Cap or Federal Percentage Cut

Let’s begin with the positive news. Thanks to our collective advocacy, the proposal does not cap federal Medicaid funding to all states or reduce the federal funding percentage states receive for Medicaid expansion populations. However, the proposal includes a significant $700 billion cut in Medicaid over ten years, according to the Congressional Budget Office.

INCLUDED: 80-Hours a Month Work & Community Participation Requirement

The proposed legislation includes a new Medicaid work or community participation requirement. Individuals with a disability and parents or caregivers of an individual with a disability are among the populations exempted from this Medicaid work requirement. States must establish new processes to verify that their Medicaid beneficiaries are exempt from the participation requirement or meet the 80 hours of work, school, job training, or community service each month.

WHAT IT COULD MEAN for People with SMA

Medicaid is essential for people with SMA, many of whom already struggle to access the Medicaid caregiving hours and health care services they need to maintain their health and independence. The proposed $715 billion Medicaid cut and verification mandates will further strain states and their ability to meet the healthcare and caregiving needs of its residents, including individuals with SMA. State-level reductions or eligibility limits on home and community-based services that may result from less federal funding would negatively impact people with SMA. In addition, people with SMA could lose Medicaid coverage due to inadvertent challenges related to the new state verification processes. Cure SMA supports strengthening Medicaid with increased access to the care and supports that people with SMA need to live and thrive in their communities. 

WHAT COMES NEXT: The Legislative Next Steps 

The Medicaid cut proposal is being considered under a fast-track, simple majority legislative process. However, committee approval is the first step in the process and the identical Medicaid proposal must win approval in both the U.S. House and U.S. Senate as part of a larger package before it is sent to the President to become law. 

Thanks to past advocacy by the SMA and disability communities, several Members of Congress, especially in the U.S. Senate, have raised concerns over deep cuts to Medicaid given its impact on residents in their states, including people with disabilities. While the outcome of this debate is unclear, continuing to educate Members of Congress and share our Medicaid stories is important and urgent. 

SMA community members and supporters can join Cure SMA in our effort to protect Medicaid for individuals with SMA by contacting their Members of Congress through Cure SMA’s Action Center: https://www.votervoice.net/CureSMA/Campaigns/110274/Respond