Kaitlin Maron found out her son was set to lose Medicaid coverage by chance, at a routine doctor’s appointment.

Her son’s physical therapist told the Port St. Lucie resident last week that his coverage would expire Sunday, his 10th birthday and Easter this year. Since then, she’s been scrambling to make sure that doesn’t happen.

“It’s very stressful,” Maron said. “(Without Medicaid), there would be no way that I would financially be able to support him.”

Her son Rylan was born with complex health issues intensified by a traumatic brain injury as a toddler. He is immune deficient and relies on a wheelchair, feeding tube, special formula, regular doctor visits and around-the-clock care. His medical costs are so expensive that even a day without coverage could cost Maron hundreds or thousands of dollars.

She’s missed two days of work this week to sort out her son’s coverage and file an appeal. Because she filed before Sunday, he is entitled to continuous coverage while the appeal is being heard. She says she never saw any communication from the state telling her she could appeal or even that her son’s coverage was up for renewal.

“I’m very lucky that I’m very strong-willed and willing to go to the bitter end for my son. There’s some parents that just can’t do that. And that’s not any fault to them, but it’s these kids that are going to suffer,” Maron said.

Florida has dropped over 1.3 million people, including 460,000 children, from its state Medicaid program since April 1, 2023, after the end of a pandemic-era policy that banned states from removing ineligible participants from the health insurance program for disabled and low-income people.

This month, the state began removing children like Rylan with complex chronic conditions. Eligibility reviews for that group were delayed until now, though there have been one-off instances over the past year where kids were mistakenly removed despite falling into that category.

As a result, local nonprofits have seen a “huge uptick” over the past two weeks in calls from panicked parents of Florida kids with cancer, developmental disorders and other serious conditions, said Miriam Harmatz, founder of the nonprofit Florida Health Justice Project. Most of these children are set to lose coverage Sunday.

“It has to be addressed urgently,” Harmatz said. “For many of these children … if they don’t get (ongoing coverage) they’re going to be hospitalized or face serious risk of terrible outcomes.”

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