Florida mom ‘stuck’ after 14-month-old’s health coverage terminated — just before receiving life-saving care. How to avoid this insurance nightmare

“They’re just leaving me stuck, and I can’t be stuck because my son's life is depending on it, (1)” Mendez told the news station.

A rule most parents don't know exists

What happened to Shae wasn’t a rare clerical error, but highlights a rule that catches many families off guard: Medicaid eligibility is tied to state residency. Which means coverage doesn’t always automatically follow families when they cross state lines, even temporarily for medical care.

This differs fundamentally from private health insurance. When you move with private insurance through the health insurance market or an employer plan, you typically qualify for a special enrollment period to select a new plan (6). While you’ll still need a new policy in your new state, the process is more straightforward and coverage can often begin quickly.

However, with Medicaid, there’s no transfer option as each state administers its own program with unique rules. As HealthInsurance.org explains, “because each state has its own Medicaid eligibility requirements, you can’t just transfer coverage from one state to another, nor can you use your Medicaid coverage when you're temporarily visiting another state, unless you need emergency health care (3).”

That being said, states are required to provide Medicaid to their residents, including those temporarily absent under certain circumstances. And Medicaid allows for states to establish interstate agreements to prevent low-income children who rely on the program from losing coverage or experiencing gaps in the continuity of their care. That coordination may be necessary especially in situations where children would otherwise lose their coverage due to family migration as a result of natural disasters, emergency evacuations, educational needs, public health emergencies or other similar circumstances (2).

Why this matters for millions of families

More than 77.9 million Americans rely on Medicaid and the Children's Health Insurance Program for health coverage (4). Many parents assume that if their child has Medicaid, coverage will follow them wherever they need to go for care.

That assumption can be dangerous. While Medicaid typically covers pre-approved out-of-state treatment — as Shae's initially was — prolonged absences from your home state can trigger residency questions that jeopardize coverage.

The consequences can be devastating. Shae was born with a FOXP3 mutation, which his mother described as “a-one-in-a-million” genetic syndrome that causes a severe, life-threatening autoimmune disorder.

After unsuccessful treatments at Nemours Children’s Hospital in Orlando, specialists found him a bed at the Children's Hospital of Philadelphia for specialized care he couldn't receive in Florida.

For families seeking medical care out of state, the challenge is determining when a “temporary absence” becomes a change in residency. States have flexibility in defining these terms, and the rules aren't always clear or consistently applied.

After Mendez contacted Florida Congresswoman Kat Cammack and WFTV Action 9, Shae's coverage was reinstated, keeping his transplant on schedule. However, DCF hasn’t publicly explained why coverage was initially cut or subsequently restored.

What families need to know

Parents planning to move between states, or seeking medical care requiring extended out-of-state stays, should understand several critical points:

Medicaid doesn’t transfer automatically. You must close coverage in your old state and reapply in your new state as a new applicant, according to Medicaid Planning Assistance (5). Each state has different income limits, asset limits and coverage rules.