Family caregivers serve a vital role for many children and adults affected by neuromuscular diseases. Research breakthroughs are leading to longer lives for many conditions, but due to the progressive nature of neuromuscular diseases, many individuals will require support at some point in their journey. Family caregivers often step up to fill the gaps left by decades of underinvestment in the paid caregiving workforce and empower their loved ones in the neuromuscular disease community to maximize their independence and achieve their goals.

While health research has found positive benefits to caregiving, there can be significant challenges – from physical and emotional strain, to financial costs, to fragmented support systems. Top challenges reported by family caregivers in the neuromuscular disease community include difficulty navigating administrative barriers to get the benefits their loved ones need and the high costs of providing care.. Many family caregivers in the neuromuscular community pay out of pocket for necessary items and services, including modifications to make homes and vehicles accessible, medical equipment and therapies, and incontinence supplies. When a loved one lives with a chronic condition like a neuromuscular disease, these are costs borne for many years. Family caregivers provide essential care and their contributions are valuable. Mischaracterizations of their efforts as ‘ripe for fraud’ or ‘work families used to do for free’ devalues those contributions and does nothing to alleviate the challenges of providing care.  

Despite these challenges and the unprecedented cuts to Medicaid passed in 2025, Congress is considering proposals to make even further cuts to the program, risking access to home and community-based services for the neuromuscular disease community, including family caregivers. Contact your members of Congress today and urge them to reject further cuts to community-based care and instead support bipartisan solutions to common challenges faced by caregivers.  

There are two bipartisan bills that will help alleviate some of the challenges faced by caregivers.

• Alleviating Barriers for Caregivers Act (S. 1227 / H.R. 2491) — Requires CMS and SSA – with input from family caregivers, including caregivers with disabilities, and individuals entitled to or filing for benefits – to review and simplify processes for tasks such as establishing eligibility, enrolling in/maintaining eligibility, and utilizing the full benefits available in Medicaid, Medicare, CHIP, SSI, and SSDI. 
• Credit for Caring Act (S. 925 / H.R. 2036) — Creates a non-refundable tax credit of up to $5,000 to offset some costs of caregiving.

Please urge your members of Congress to cosponsor these bills today and oppose further cuts to Medicaid and the HCBS it provides!

Join Our "Family Looks Like" Video!

MDA is creating a short, powerful video that highlights the real, everyday impact of family caregiving in the neuromuscular disease community, and we would like you to consider participating. This video will bring together families from across the country to complete the phrase: “Family looks like…” in diverse ways. Learn more about how to submit your video!

Additional Caregiving Resources

• MDA Guide for Caregivers
• MDA Quest Articles about Caregiving
• MDA Resource Center: 800-572-1717 | ResourceCenter@mdausa.org