Many adults with SMA and families of children with SMA struggle to access in-home caregivers, and often do not receive enough Medicaid caregiving hours to live independently and to meet their true everyday needs. In addition, individuals with SMA and their families describe how they struggle to recruit and retain personal care attendants (PCAs) and other direct care workers to assist with daily activities such as bathing, eating, and getting dressed.
Expanding Medicaid home and community-based services that fund home health aides is critical to ensuring that individuals with SMA can maintain their health and independence. New legislation supported by Cure SMA, known as the HCBS Relief Act (S. 3118), would temporarily provide states with additional Medicaid resources to help address the caregiving crisis facing individuals with SMA and other disabilities.
Tell Congress to address the caregiving needs of the SMA community by investing in Medicaid home and community-based services.
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