New federal guidance is detailing how more stringent Medicaid eligibility rules will be applied but doing little to assuage concerns about how the changes may impact those with developmental disabilities.
The 33-page document from the Centers for Medicare and Medicaid Services outlines how states should evaluate exemptions to forthcoming Medicaid work requirements based on “medical frailty.”
Most states must implement what are known as “community engagement” requirements for many Medicaid beneficiaries by the start of next year. Under the rules, beneficiaries will be required to prove that they are working, volunteering or going to school at least 80 hours per month in order to qualify for coverage. The changes were part of a broad 2025 law known as the One Big Beautiful Bill Act that included nearly $1 trillion in Medicaid cuts.
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The law allows those who are deemed “medically frail” or who have “special medical needs” including individuals with physical, intellectual or developmental disabilities to be exempt from the work requirements. Parents, guardians, caretaker relatives and family caregivers of those with disabilities are also exempt.
However, regulations issued by CMS in June detailed stricter standards for who qualifies for these exemptions than many had expected. Under the rule, people with physical, intellectual or developmental disabilities will qualify as “medically frail” only if their condition “significantly impairs” their ability to perform at least one activity of daily living, or ADL, which includes bathing, dressing, walking, toileting, eating or getting in and out of bed or a chair.
The guidance out this month gives more details on how states should go about implementing the “medical frailty” exclusion, doubling down on the requirement that a person’s condition impacts their ability to work.
“An individual in one of the five categories is considered medically frail only if the individual’s physical, mental, or other behavioral health condition significantly impairs the individual’s ability to comply with the community engagement requirement,” the guidance states.
Disability advocates have warned that this standard goes beyond what Congress intended and threatens coverage for people with disabilities.
“This updated guidance from CMS does attempt to provide more clarity, but doesn’t undo the overreach of the initial proposed final rule that is causing confusion for states, families and people with disabilities,” said Nicole Jorwic, chief program officer at Caring Across Generations. “Congress wrote a broad, clinically grounded definition of medical frailty into law specifically to protect people with serious conditions and disabilities. What we’re seeing now is the administration narrowing that definition through sub-regulatory guidance, without the transparency or accountability of formal rulemaking.”
CMS said in the guidance that states should attempt to verify “medical frailty” automatically using information they already have from the previous 12 months of claims data. If they are unable to do this, states may allow beneficiaries to provide a one-time self-declaration. Subsequently, states must verify an individual’s “medical frailty” status every 12 months “using reliable information or documentation.”
One option states can use is a tiered approach, CMS said in the guidance. Under this model, states might evaluate a person by first checking a list of conditions that are known to qualify for an exemption by their very definition before then considering a list of conditions that “may indicate an individual is medically frail” if confirmed with additional information. Finally, in cases where there is insufficient information to judge based on the first two tiers, a manual review would be triggered.
States can also consider other data-driven approaches, CMS said.
Kim Musheno, senior director of Medicaid policy at The Arc of the United States, said it’s good that CMS is telling states to use information they already have to determine if people qualify for exemptions, but she said that relying on claims data for the previous year may not be sufficient.
“A claims record doesn’t always show how a disability affects someone’s daily life. That’s especially concerning for people with intellectual and developmental disabilities whose disabilities may be lifelong but aren’t reflected in recent medical claims,” she said. “If the state’s data aren’t enough, the burden can shift back to the person to track down medical records or provider documentation.”
Musheno said she’s also concerned that CMS made its tiered framework optional, giving states significant latitude to develop their own approaches and lists of qualifying conditions.
“Two people with the same disability could face very different processes and potentially different outcomes, simply because they live in different states,” she said.
Concerns that individuals with disabilities and other health conditions will be stripped of needed health coverage led more than 70 organizations to file an amicus brief this month in a case brought by a coalition of officials from 25 states and Washington, D.C. challenging the CMS rules.
“Congress excluded medically frail people from the work requirements,” said Jane Perkins, litigation director at the National Health Law Program, which filed the brief along with the American Association of People with Disabilities, the Autistic Self Advocacy Network, Easterseals and many other groups. “They should not have to repeatedly prove that they are unable to meet the work requirements.”
Barbara Merrill, CEO of the American Network of Community Options and Resources, or ANCOR, which also signed onto the amicus brief, warned that more than just health coverage is at stake.
“The new Medicaid work requirements will interrupt access to community-based services for people with disabilities and threaten the fragile network of community providers,” she said. “The increased Medicaid coverage losses that will result from narrowing the medical frailty exemption will ultimately reduce access to services for people who truly need them and harm community providers who will continue to deliver support without receiving payment for their services.”
CMS did not respond to a request for comment about the new guidance.
