New Medicaid Work Requirement Rule: What it Means for the CMD Community
- Avery Roberts
- 4 hours ago
- 2 min read
On June 1, 2026, the Centers for Medicare and Medicaid Services (CMS) issued a new Interim Final Rule (IFR) on Medicaid work requirements, also called “community engagement requirements.” This rule sets federal guidance for how states will implement work or reporting requirements for some adults on Medicaid starting January 1, 2027.
Why This Matters for Our Community
Many people living with congenital muscular dystrophy (CMD) rely on Medicaid for therapies, medical equipment, and essential support that helps them live independently. The new rule could impact eligibility for some adults, but it also includes exemptions for people who are disabled, medically complex, medically frail, or caregivers of these individuals. How states interpret these exemptions will directly affect members of our CMD community.
Key Takeaways for Families and Individuals Living with CMD
The rule defines disability, medical complexity, and medical frailty, but rare conditions like CMD may not fit neatly into these definitions. Families will need to watch closely how exemptions are applied.
While some individuals may initially self-attest their exemption status, more documentation may be required after 2028.
Parents and caregivers of individuals living with CMD may qualify for exemptions, but each state may implement these rules differently.
The rule allows a combination of work, school, unpaid work, and caregiving to meet requirements, but families with complex medical needs may face challenges navigating these options. For more information on work requirements, visit the EveryLife Foundation for Rare Diseases.
Why Your Voice Matters
Cure CMD, alongside our advocacy partners, is closely monitoring this rule and its risks for rare disease communities. States will begin implementing these requirements to maintain federal Medicaid funding, which means action now is critical. Your stories and experiences help policymakers understand the real-world impact and protect access to essential services like Medicaid.
Actions You Can Take Now
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Medicaid is a lifeline for our community. It provides the therapies, equipment, and daily support that allow people living with CMD to thrive. By staying informed, sharing your experiences, and advocating for strong protections, we can help ensure these essential services remain available
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