This week, Congress unanimously approved a top Cure SMA caregiving priority to make it easier for individuals with spinal muscular atrophy (SMA) and others to find information about state caregiving options.
The Think Differently Database Act (H.R. 670) requires the U.S. Department of Health and Human Services to create a web page with federal, state, and local information about caregiving services, including Medicaid home and community-based services (HCBS) eligibility, for individuals with disabilities and their families.
President Biden is expected to sign the bipartisan legislation into law in the coming days.
The Story Behind the SMA Community’s Legislative Caregiving Win
The approval of the Think Differently Database Act marks the culmination of a year-long advocacy effort led by Cure SMA and the SMA community.
At the request of Cure SMA’s Adult Advisory Council, Cure SMA launched a comprehensive survey in December 2023 to understand the caregiving needs and challenges of individuals with SMA and their families. In February 2024, Cure SMA released the findings of that survey in Stuck Inside: A National Report on Caregiving for Individuals with Spinal Muscular Atrophy. The report highlighted the caregiving needs of children and adults with SMA (100+ hours a week on average) and their struggles with finding and retaining qualified caregivers. One of the report’s surprising findings was that nearly half (47%) of all individuals with SMA and their families struggled to even understand what caregiving options were available to them in their states.
In the spring of 2024, Cure SMA shared the report with Congress and organized a series of meetings with key congressional offices. In one of its congressional meetings, Cure SMA learned about a newly introduced bill aimed at providing caregiving information for individuals with intellectual disabilities. Cure SMA reached out to the bill’s sponsors to ask that they expand the scope of the legislation to include caregiving information for all individuals with disabilities. They agreed and, on May 16, 2024, a U.S. House Subcommittee approved the expanded caregiving bill to ensure the caregiving information was relevant for individuals with SMA.
With momentum building, Cure SMA mobilized the entire SMA community through its Advocacy Action Center, encouraging individuals with SMA and their families to ask their Members of Congress to support the legislation. Together, Cure SMA and the SMA community reached every single Member of Congress to educate them about their caregiving needs and how the expanded caregiving legislation could help address this challenge. In addition, Cure SMA organized a coalition of support for the legislation from other national disability organizations.
On December 17, the U.S. House considered and unanimously approved H.R. 670 to help address the caregiving needs of individuals with SMA and other disabilities. On December 20, the U.S. Senate also unanimously approved the legislation, sending the bipartisan bill to the President’s desk for his signature into law.
Final action on this important legislation would not have been possible without the support and advocacy of the lead congressional sponsors, including U.S. Representative Marc Molinaro, U.S. Representative Mikie Sherrill, and U.S. Representative Ann Kuster in the U.S. House of Representatives and U.S. Senator Eric Schmitt and U.S. Senator Jon Ossoff in the U.S. Senate. Cure SMA especially wants to acknowledge SMA community members who shared their experiences and advocated for improvements related to caregiving. Cure SMA will continue to educate and advocate to address the other challenges identified in the SMA community caregiving report.