Medicaid Renewal: A Guide For People With Disabilities

Takeaways

• Many people with disabilities lose Medicaid coverage because of paperwork problems rather than because they stopped qualifying.

• Changes to Medicaid renewals mean some people may be subject to more frequent reviews.

• Acting quickly is key to preventing gaps in care and retaining coverage.

For many people with disabilities, Medicaid is more than health insurance. It can pay for home care, personal assistants, therapies, equipment, and the medications that keep them stable. That is why a missed letter in the mail or a lost form can cause so much harm. 

Losing coverage due to paperwork errors is common — and often fixable. Knowing how states determine Medicaid coverage, why people lose it, and what to do afterwards is vital.

How Medicaid Determinations Work

Since Medicaid is a federal program that is run by the states, details vary. Historically, federal law required states to review who qualified for Medicaid at least once a year, called a renewal or redetermination. This is still true for people with disabilities, those over age 65, pregnant individuals, and children under age 18.

The state usually starts by checking records it already has, such as Social Security and income data. If that check shows you still qualify, your Medicaid coverage should continue without you doing anything. When the state cannot confirm this on its own, it sends a renewal form or a request for documents. Typically, you have at least 30 days to respond.

For people who qualify because of a disability, the review can look at more than income. It may also look at savings and other resources, household changes, and whether you still meet the disability criteria. People who receive Supplemental Security Income (SSI) can receive coverage automatically. Others have to qualify separately.

A significant change is coming in 2027. Many adults covered through Medicaid expansion will undergo a Medicaid review every six months instead of 12. Some will now face work or community engagement requirements.

People who are medically frail or have disabilities are generally exempt. Still, they may need to prove that they qualify for an exemption. Ask your state how this affects you.

Why Eligible People Lose Coverage

Most coverage losses in recent years were not because people no longer qualified for coverage. Rather, the losses resulted from procedural errors, such as their state not getting the paperwork it needed.

Common causes include:

• Renewal notices that go to an old address and the person never sees them.

• Notices that are long, confusing, or not in an accessible format mean deadlines can pass without knowing.

• Requested proof, such as bank statements or medical records, can be difficult to gather, especially without help.

• Changes in benefit eligibility can shift which Medicaid category applies and trigger a new review.

• A state error, incorrectly valued incomes or assets, or a mishandled disability review can end coverage.

• The case may not list caregivers, guardians, or family members who handle the mail as approved contacts.

What to Do After an Improper Termination

Acting quickly and without panicking is key. Many terminations are reversible.

• Always read the notice closely. It should say why coverage ended and how to appeal. Make note of important deadline dates.

• Ask a caseworker whether the 90-day window applies. Most states allow up to 90 days to submit any missing paperwork that resulted in termination. For some coverage groups — including disability-based coverage — the 90 days is a federal mandate.

• Request a fair hearing as soon as possible. If you think the termination decision is wrong, you have the right to a fair hearing. Doing so before the termination date on the notice (typically within 10 days) can help preserve your benefits.

• Ask for an accommodation in writing. Under disability rights laws, you can ask for help filling out forms, extra time, large print, or another accessible format. Put the request in writing.

• Get help from professional services. Legal aid offices, disability rights organizations, and benefits counselors often help for free. Bring your termination notice and any letters.

• Keep physical copies of everything. Write the date, time, and name of anyone you speak with for your records.

How to Prevent Gaps in Providers, Medications, and Services

The best protection is preparation before a renewal is due.

• Make sure your state has your current address, phone number, and email. Request text or email alerts if available.

• Name an authorized representative. Many states allow a family member, guardian, or advocate to receive notices and submit paperwork for you.

• Mark renewal and notice dates on your calendar well ahead of time.

• Respond early if you can. Many states allow renewals online, by phone, by mail, or in person. Choose what works best and keep proof that you submitted your renewal.

• If your medication coverage may lapse, talk to your pharmacy and prescribers right away. Ask about emergency or short-term refills and whether a longer supply is possible while you sort things out.

• Tell your doctors, therapists, and home care agency when a renewal is under way. Ask your case manager or managed care plan how to proceed with interrupted coverage.

• If you use a waiver or home care services, ask who handles reassessments, since these can be separate from the yearly renewal.

• Keep a folder with your approval letters, ID cards, recent renewal paperwork, and medical documentation of your disability.

Additional Reading

For additional reading on issues related to Medicaid, check out the following articles:

• Don't Let DAC Benefits Disrupt Medicaid and SSI

• How Medicaid Changes Could Affect People With Disabilities