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Statement from the Muscular Dystrophy Association on Court Decision Affecting Medicaid Community Engagement Requirements

Washington, D.C., Thursday, October 29, 2026 – The Muscular Dystrophy Association (MDA) recognizes today’s decision by the U.S. District Court for the District of Massachusetts to block parts of the federal rule implementing Medicaid Community Engagement Requirements while potential appeals proceed. The ruling addresses how people may qualify for an exclusion from the requirements based on medical frailty, an issue with important implications for people living with neuromuscular diseases who rely on Medicaid for access to essential health care and support services. Read MDA’s amicus brief here.

The court granted in part and denied in part the plaintiffs’ motion for summary judgment challenging the Centers for Medicare & Medicaid Services’ (CMS) rule implementing these requirements.

The court’s ruling on the definition of medical frailty applies nationwide. The six month pause in determinations also applies to the states and the District of Columbia that brought the lawsuit: Arizona, California, Colorado, Connecticut, Delaware, the District of Columbia, Hawaii, Illinois, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Nevada, New Jersey, New Mexico, New York, North Carolina, Oregon, Pennsylvania, Rhode Island, Vermont, Virginia, Washington, and Wisconsin.

What this decision means for the neuromuscular disease community

The court agreed with the plaintiffs’ argument that CMS exceeded the authority granted by Congress under the Working Families Tax Cut Act (also known as H.R. 1) when CMS defined medical frailty based on a person’s ability to work. For people living with neuromuscular diseases, this decision is an important development. Many people in the community rely on Medicaid to access specialized medical care, treatments, therapies, medical equipment, and other services that support their health, independence, and quality of life.

The ruling changes how medical frailty is defined under the rule, but it does not eliminate the need for people to demonstrate that they qualify for an exclusion under the revised definition. The broader rule is still moving forward on a January 2027 implementation timeline, and the decision may be appealed.

MDA encourages people and families affected by these changes to stay informed as the legal process continues and additional implementation guidance becomes available.

"Today's decision provides important relief, making it easier for people living with disabilities to gain an exclusion from the Medicaid work reporting requirement. People living with neuromuscular diseases often rely on Medicaid for lifesaving care, specialized treatments, and essential services. We are encouraged that the court has taken important steps to protect access to care for the community," said Paul Melmeyer, MPP, Executive Vice President, Public Policy and Advocacy at the Muscular Dystrophy Association.

MDA will continue to monitor developments and advocate for Medicaid policies that protect access to essential care and services for people living with neuromuscular diseases.

Join MDA in advocating for access to care

Public policy decisions can directly affect access to health care, services, and the resources people need to live longer, more independent lives. MDA works with the neuromuscular community and policymakers to help ensure that the needs and experiences of people living with neuromuscular diseases are represented in decisions that affect their lives. Sign up to advocate with MDA at MDA.org/Advocacy to stay informed about policy issues, engage with your elected officials, and help protect access to care and services for the neuromuscular community.

Media contact: press@mdausa.org.

About MDA Advocacy

The Muscular Dystrophy Association is a nonpartisan 501(c)(3) organization. As strategic partners with the federal government, we work with public officials and administrations of all parties to advance policies that protect the rights, inclusion, dignity, and agency of people with neuromuscular disease. We do not endorse or support candidates or engage in political campaigns or activities. Join us at MDA.org/Advocacy to continue to defend access to care and services and to fight for robust neuromuscular disease research funding, independence, and community connection.

About Muscular Dystrophy Association

Muscular Dystrophy Association (MDA) has been at the center of progress for people living with muscular dystrophy, ALS, and over 300 other neuromuscular conditions for over 75 years. We unite researchers, clinicians, advocates, and families to speed the pace of discovery, improve access to expert care, and ensure inclusion in every aspect of life. Our mission is simple: give the people we serve the tools and opportunities to live longer, more independent lives. To learn more visit mda.org. Follow MDA on social media on Instagram, Facebook, X, TikTok, LinkedIn, and YouTube.