Cure SMA has released a new policy brief highlighting the essential role Medicaid-funded home care plays in the lives of individuals with spinal muscular atrophy (SMA), a rare neuromuscular disease.
Due to severe muscle weakness, many individuals with SMA rely on Medicaid-funded home care to meet their complex daily needs, including eating, bathing, bathroom support, safe transfers, and respiratory care. These services allow individuals with SMA to maintain their health, independence, and ability to live in and contribute to their communities. “Home care allows me to work and be a taxpaying citizen,” said an adult with SMA featured in the brief.
Cure SMA will use the brief to educate policymakers about the importance of Medicaid home care, including self-directed care, which allows individuals to choose and manage their caregivers, and paid family caregiving, which provides safe, reliable, and specialized support. These essential services for people with SMA and other disabilities have increasingly been targeted for cuts and mischaracterized as unnecessary.
“Policies that limit access to these services—or that inappropriately group essential home care with broader discussions of waste, fraud, and abuse—threaten independence, health, and economic stability for individuals with SMA and their families,” according to the new Cure SMA brief.
SMA community members who care about Medicaid home care are encouraged to:
- Read and share the policy brief
- Educate your Members of Congress about the importance of Medicaid home care
- Share why caregiving matters to you through a first-person social media post or with Cure SMA
As the national organization that represents individuals with SMA and their families, Cure SMA has led federal and state efforts to promote access to Medicaid, including caregiving. In 2024, Cure SMA released a national report highlighting SMA community caregiving needs and policy recommendations.
For more information, contact [email protected].