ME/CFS San Diego is now a 501c3 public charity!
NOTE: I AM NOT AN EXPERT - This is my understanding as to who is impacted and how medically frail guidance works.
The new federal Medicaid work requirement is not for every Medicaid recipient. The key distinction is which Medicaid eligibility group someone is enrolled through. Beginning January 1, 2027, the federal requirement generally applies to non-pregnant adults ages 19–64 who are not enrolled in or entitled to Medicare and who are covered through the ACA Medicaid expansion or certain expansion-like 1115 waiver programs (GA, HI, MA, NY, OR, TN, UT, WI have programs with included populations - need to check your particular program).
For someone with ME/CFS who is 19–64 and receiving SSDI, who is not enrolled or entitled to Medicare, there are two very different possibilities:
Medicaid through a disability-based or other non-expansion eligibility category: If they receive Medicaid because of disability, SSI, former foster youth status, pregnancy, or another qualifying category, they are not part of the ACA expansion-adult population subject to the new work requirement in the first place. People who qualify through the mandatory SSI pathway generally do not need to invoke medical frailty as an exemption.
Medicaid ACA Expansion or Qualifying Expansion like 1115 Waiver Programs: If they happen to receive SSDI but are enrolled through the expansion category, they can be subject to the work requirement. They may then qualify for the medically-frail/disability exemption. That is a separate process and is not the same thing as being enrolled in Medicaid through a disability-based eligibility category.
To see how you qualified for Medicaid: Check your Medicaid approval or renewal notice. It should say why you qualify for Medicaid or identify your eligibility category/basis. If you can't find it or it isn't clear, contact your state Medicaid agency and ask: “What is my Medicaid eligibility category or basis of eligibility?”
The second situation is where the state has to establish a process for determining medical frailty. The federal guidance provides a framework, including a tiered approach. In 2027, states may generally accept self-attestation when reliable information is unavailable. Beginning in 2028, self-attestation may generally be used only once during an enrollment period. Medical frailty must be reverified at least every 12 months, although a state can choose to verify it more frequently.
IF you are subject to the work requirements: CMS has given states a new way to determine which Medicaid recipients are medically frail and therefore exempt from the new requirement to work or volunteer at least 80 hours per month.
The new CMS guidance divides medical conditions into three tiers.
Tier 1 includes conditions so severe that the diagnosis itself establishes that a person cannot work or perform daily activities; no additional documentation is required.
Tier 2 includes conditions that may indicate medical frailty but require additional evidence from existing data, such as recent acute-care visits, hospitalizations, or pharmacy and medication records.
Tier 3 conditions require an individualized, case-by-case review.
States are not required to use the tier system, but they are under pressure to establish their eligibility systems by January 1, 2027
ME/CFS patients who are subject to the work requirements may be particularly vulnerable under the lower tiers of this system. Most have limited access to healthcare providers knowledgeable about ME/CFS, often have to ration medical care and prescriptions because of financial concerns, and may avoid emergency departments or hospitalization because exertion and acute-care environments can trigger severe post-exertional malaise (PEM). They also may have relatively little conventional medical documentation, such as hospitalizations, acute-care visits, or treatment records, because there are no official treatments or tests for ME/CFS.
Patients who are genuinely medically frail may not have the kind of medical records these systems rely on to identify them. ME/CFS advocacy groups are therefore urging state Medicaid agencies to ensure that ME/CFS is appropriately recognized within the medical-frailty framework and that patients are not subjected to unnecessary documentation or procedural barriers.
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