Starting January 1, 2027, most states must require certain adult Medicaid enrollees to work, study, or volunteer 80 hours a month to keep their coverage. This comes from a new federal rule (CMS-2454-IFC) issued June 1, 2026.
Many parents and caregivers of children with Sanfilippo Syndrome qualify for an exemption, but you may still need to prove it.
Here’s what to know.
Who This Applies To?
- Adults ages 19–64 enrolled in Medicaid through the “adult group” or certain expansion programs.
- Applies in 43 states and D.C. (not U.S. territories).
- Does not apply to children, or to anyone already on Medicare.
Who Is Exempt?
- Parents/caregivers of a child age 13 or under, or of a person with a disability.
- Individuals who are medically frail or have significant medical needs.
- Pregnant or postpartum individuals; former foster youth; American Indian/Alaska Native individuals.
How the 80-Hour Requirement Can Be Met (If You Are Not Exempt)
- Work, volunteer/community service, or a job-training program (80 hours/month)
- Half-time or more enrollment in school
- Monthly income at or above 80x the federal minimum wage – about $580/month in 2026
- A combination of the above
What You Should Do Now
- Watch for a notice from your state Medicaid agency. States must reach out to enrollees before the requirement starts.
- If you care for your child with Sanfilippo (or another family member with a disability), ask your state how to document your caregiver exemption. Don’t assume it will be applied automatically.
- If your state cannot verify your status, you will get 30 days to respond before losing coverage. Respond right away and keep copies of everything you submit.
- If coverage is ever denied or ends, you can reapply at any time; exemption status is reassessed when you do.
Key Dates to Remember
June 1, 2026 | CMS issued the rule. A public comment period is open.
Before Jan. 1, 2027 | State must reach out to enrollees who may be affected.
Jan. 1, 2027 | States must generally begin enforcing the requirement.
Questions?
Contact Foundation Community Outreach and Education Coordinator Kassidie Reynolds at (803) 250-1985 or Kassidie@CureSanfilippoFoundation.org.
Source:
CMS.gov Fact Sheet, CMS-2454-IFC (June 1, 2026). This flyer is a plain-language summary, not legal or benefits advice. Rules and exemptions vary by state.