People with Ataxia who rely on Medicaid coverage may be impacted by new Medicaid community engagement requirements and may be required to provide proof of the severity of their health condition to be exempted. The process will vary by state, so it is important to pay attention to Medicaid communications, talk with your healthcare provider, and prepare records before renewal deadlines.
Medicaid
Medicaid is a federal program that provides healthcare coverage for many low-income people, as well as some children, pregnant people, people with disabilities, and the elderly. Eligibility rules and income limits vary by state. Learn more about Medicaid here: www.healthcare.gov/medicaid-chip/.
Medicaid can be called different names depending on where you live. For example, Wisconsin’s Medicaid program is called BadgerCare. If you’re unsure whether you are enrolled in Medicaid, you can find your state’s program name on healthcare.gov’s webpage.
New Community Engagement Requirements
In 2025, Congress passed H.R. 1, also known as the Big Beautiful Bill. Included in this new law was a change to Medicaid community engagement requirements in most states. Starting January 1, 2027, people who are covered by Medicaid will be required to document at least 80 hours of work, volunteering, attending school, or another qualifying activity.
People with serious medical conditions or disabilities may qualify for a medical frailty exemption from these requirements. However, having a serious or complex medical condition may not be enough by itself. To qualify, the condition must be proven to be severe enough to affect the person’s ability to work, volunteer, attend school, or complete another required community engagement activity. KFF has more information about the medical frailty exemption and Medicaid work requirements at www.kff.org/medicaid/the-medical-frailty-exemption-from-medicaid-work-requirements-key-takeaways-from-the-cms-interim-final-rule/.
These new community engagement requirements do not apply to people who are on Medicare, even if they are also on Medicaid.
There is concern that these new requirements, along with the additional burden of proving medical frailty, could cause some people to lose Medicaid coverage even if they remain eligible.
What You May Need To Do
We want the Ataxia community to know about these requirements before they take effect so people have time to prepare. If you may need a medical frailty exemption, you may need to talk with your healthcare provider, gather health records, and submit information to your state Medicaid program showing how your condition affects your ability to meet community engagement requirements.
In 2027, patients will be able to self-attest that they have a health condition that warrants medical frailty, but the self-attestation process will vary by state. Starting in 2028, people will be required to provide proof of their medical frailty during each Medicaid enrollment cycle, which occurs every six months. States could also require proof more frequently. Harvard’s School of Public Health has more details here: hsph.harvard.edu/news/medicaid-work-requirements-and-medical-frailty-exemption-put-health-coverage-in-jeopardy/.
You should:
- Read every communication you receive from Medicaid carefully, including renewal notices, requests for information, deadlines, and instructions about community engagement requirements.
- Talk with your healthcare provider ahead of your Medicaid enrollment cycles to ensure they have time to document how the severity of your Ataxia affects your ability to meet the new community engagement requirements.
- Contact your state Medicaid office if you have questions about how you may be affected, how to comply with the new requirements, or how to request a medical frailty exemption. Find your state’s Medicaid contact information here: www.medicaid.gov/about-us/where-can-people-get-help-medicaid-chip
Advocacy
The new rule went into effect on July 31, 2026. Before it went into effect, NAF, along with over 43,000 other groups and individuals, submitted public comments to the Centers for Medicare and Medicaid Services (CMS) voicing opinions about the new rule. NAF submitted a joint comment with the Huntington’s Disease Society of America (HDSA), which you can read on the public docket.
In the comment, we described several concerns: that eligible people could lose coverage because of new reporting requirements, that patients and healthcare providers could face increased administrative burdens, and that states may need to spend more to implement the rule, potentially reducing funding for other Medicaid services such as Home and Community Based Services (HCBS).
