Medicaid will allow states to use ‘tiers’ to determine medical frailty.
How will this impact rare patients?
CMS recently shared guidance clarifying the process states must go through to build their list of medically complex and life-threatening conditions that may qualify as medically frail for the purpose of exemption from community engagement requirements. The guidance also sets dates and standards for self-attestation (allowing individuals to state that they have a condition that qualifies as medically frail without further documentation) in 2027 and 2028.
Medical Frailty
As a result of the Medicaid changes included in the 2025 H.R. 1 Reconciliation Bill, or the One Big Beautiful Bill, states will be required to implement work requirements beginning in January 2027. However, patients with serious or complex conditions will be able to apply for exemptions to these rules if they are able to show a connection between their diagnosis and their ability to work. All states are required to develop a list of conditions that may be considered for this exemption, as well as a process for adding new diagnoses and conditions over time. Read more about the requirements and RARE Foundation’s comments here.
The new guidance provides additional context for states on implementing these exemptions, including the option to establish conditions that qualify as “medically frail” using a tiered system based on evidence beyond an ICD or CPT code (diagnosis and procedure codes in healthcare data). States that choose to establish this framework can use already existing data to streamline the exemptions process, reducing unnecessary paperwork and administrative burden.
For example, a three- tier system may look like the following:
- Tier 1 conditions are those from which the state can easily confirm the individual’s ability to comply with the community engagement requirement is significantly impaired. For example, a patient with a terminal neurodegenerative disorder cannot work due to their diagnosis at any stage of their condition.
- Tier 2 consists of conditions that may indicate an individual is medically frail, but additional information is needed to determine if the condition significantly impairs the individual’s ability to comply with community engagement, such as by assessing severity or functional status. For example, a patient with an active inflammatory arthritis can have a broad range of symptoms and severities that may impact work depending on treatment.
- Tier 3 means that there is insufficient OR no information or data to assess medical frailty based on Tier 1 / Tier 2 criteria alone. This should trigger a manual individualized review process where additional documentation may be required prior to deciding on exclusion. For example, a patient with a rare cancer diagnosed 5 years prior, with no evidence of recurrence or active disease requiring some follow-up.
States are hopeful the clarifications will offer much-needed flexibility as the implementation deadline approaches, though some are initially skeptical of increasing the complexity of the process.
Self-Attestation
States must attempt to verify medical frailty using reliable information available to the state, unless no reliable data is available. For rare disease patients without a diagnosis or a new diagnosis, this will be particularly impactful.
In these instances, patients can self-attest to their condition in specific circumstances:
- Before January 1, 2028, states may require documentation or may accept a statement or other information provided under penalty of perjury each time the state verifies the individual’s medically frail status.
- After January 1, 2028, the state may only accept a self-declaration provided under penalty of perjury once during the beneficiary’s period of continuous enrollment (period of enrollment without the individual being disenrolled).
After verifying medical frailty using reliable information or documentation, states must reverify an individual’s medical frailty status at least every 12 months, but some states may chose to reverify more frequently. For rare patients and families, it’s important that individuals consider this deadline when scheduling appointments or out-of-state travel to establish the required documentation.
As states prepare for the January 1, 2027 implementation deadline, more information will be released to guide each state’s requirements and verification processes. The most important action individuals with Medicaid can take now is to ensure that contact information is updated with the state so that communications with the new requirements are not missed.
If you or a loved one are a Medicaid recipient, you can make a difference by sharing your Medicaid story [here] with decision makers. You can also visit our [Medicaid page] to learn more about H.R. 1.
