The Centers for Medicare & Medicaid Services (CMS) recently issued guidance on new Medicaid work requirements for certain adults covered through Medicaid expansion. Starting in January 2027, many adults will need to complete 80 hours per month of work, school, caregiving, community service, or another approved activity unless they qualify for an exemption.

Congress intended to protect people with disabilities - including those in the neuromuscular community - when creating the H.R. 1 legislation. However, CMS’s rule is far stricter than the plain language of H.R. 1, and it could put many people at risk of losing vital Medicaid coverage, even though they’re still eligible.

CMS is accepting public comments until July 31 at 11:59 PM ET. Please speak up and urge CMS to protect the people that Congress meant to exempt from these harmful requirements.

If you need help writing your comment, use one or more of the prompts below.  

Message prompts

1. Write about the burden of extra paperwork and repeated eligibility checks

• What would it mean for you to ask your healthcare team to certify that your condition limits your ability to work? Do you feel comfortable working with your care team this way?
• How would repeated paperwork or recertification affect you and your family?
• Congress promised those living with a disability or severe medical condition would not have to worry about work requirements. However, many people who are “exempted” will still face increased paperwork and other frustrations in order to prove their condition impacts their ability to work. How does that make you feel? 

2. Write about connecting medical frailty to the ability to work  

• How would work requirements affect you if your symptoms change over time or make working unpredictable?
• Does caregiving support help you work, stay healthy, or live independently?

3. Write about the limits on who counts as a caregiver in order to get an exclusion

• If you or a family caregiver relies on Medicaid, what would losing coverage mean for your care, health, or independence?
• Do you receive care from a non-relative, with whom you don’t reside? How will the additional criteria make it more difficult for them to qualify for an exemption? If your caregiver is unable to maintain health coverage, how might that impact your own health?  

4. Write about the impact on Medicaid services

• States may have to spend Medicaid funds to implement these requirements. This could cause states to cut elsewhere from the program. How could that affect services you rely on, such as home- and community-based services, caregiving, or waiver programs?
• Do you feel your state Medicaid agency is adequately staffed and resources to take on these unprecedented changes?