On June 1, 2026, the Centers for Medicare and Medicaid Services (CMS) issued the Interim Final Rule (IFR): Medicaid Program; Community Engagement Requirement for Certain Individuals to establish federal guidelines for states as they implement these requirements.
What We’re Seeing
In 2025, Congress passed H.R.1 that, among many other provisions, requires states to implement work reporting requirements for adults in Medicaid. This rule from CMS establishes federal guidelines for State Medicaid Agencies as they set up the requirements and processes that Medicaid beneficiaries will have to navigate beginning on January 1, 2027.
This new requirement specifies that certain adults receiving Medicaid must complete 80 hours per month of work (also referred to as “community engagement” or “work requirements”) to remain eligible for their Medicaid benefits.
Work/community engagement can include employment, work programs, community service, or educational programs. Certain individuals may be excluded from these requirements, including those who are disabled, medically frail, have a serious or complex medical condition, or are caretakers for these individuals. This new rule defines the groups of individuals eligible for exclusion and provides information about how states can verify that individuals are excluded or are in compliance with the minimum requirements.
What’s Important to Know as We Begin to Understand the New Rule
Right now, the EveryLife Foundation team is reading through the rule to understand its impact on the rare disease community. There are several themes in the rule that will be particularly important to our community as states implement this new guidance:
- First, there are several definitions in the rule around disability, medical complexity, and medical frailty, and their connection to the ability to work. We are exploring the effect of these definitions on the eligibility of our rare community. For more information on work requirements, see our website.
- Second, the rule includes guidelines for how and when individuals receiving Medicaid can self-attest (or sign off) that they meet the exclusion requirements without further documentation. The rule allows self-attestation only until 2028, but individuals will have to provide more documentation in many cases.
- Third, the rule outlines new information regarding how states can decide whether someone qualifies as disabled or medically complex, encouraging the use of healthcare code lists which do not account for significant numbers of rare diseases. To learn more about diagnostic codes and ICD-10 Codes, see our website.
- Fourth, the rule describes caregiving exemptions for parents of young children and those caring for people with disabilities. We are working to better understand how our rare disease community can qualify for these important exemptions from work requirements.
The rule outlines ways that beneficiaries can combine work, school, unpaid work, and caregiving to meet community engagement requirements and defines who is required to meet those requirements for coverage.
The EveryLife Foundation joined 48 organizations in a statement to express our initial concern with the rule, while we fully explore the implications specific to the rare disease community. The Foundation has had concerns both during and after the legislative process about the potential harm the Medicaid policies would have on the rare disease community and are concerned the rule will not protect the rare disease community.
Stronger Together – What’s Next?
States will be required to implement work requirements to maintain federal Medicaid funding. While the law establishing work requirements was passed in mid-2025, 42 states and the District of Columbia were waiting for the publication of this rule to begin their implementation strategy.
Now that the IFR has been published, the EveryLife Foundation is actively working to understand the full breadth of the impact this rule will have on the rare disease community. As we continue to assess this rule and its impacts, we will share information from our team and additional trusted resources with the community on our website and through social media, including opportunities for engagement in shaping the final state of this rule.
This is an interim rule, it is not yet finalized, and there are always opportunities for advocacy. The EveryLife Foundation will be identifying opportunities to activate, protect our community’s eligibility, and engage in legislative processes and comments. Comments on the proposed rule are due by July 31.
We know that Medicaid is a lifeline for our rare disease community that enables our community members to live and thrive, and we need your help. Please contribute to our story bank, visit our website, join our webinar (details coming soon), and stay engaged for opportunities to activate.
For more information on Medicaid and Medicaid funding, visit our website.
