Some of Florida’s sickest kids are losing Medicaid coverage on Easter Sunday
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.”
Harmatz is spreading the word that people can file an appeal if they think their child is still eligible.
She said the best way to appeal a termination with such limited time left is to email the office of appeal hearings at appeal.hearings@myflfamilies.com. Parents can contact her nonprofit for logistical help at help@floridahealthjustice.org.
By filing before Sunday, they can keep coverage for their children while their appeal is being reviewed.
“The bottom line is there should be no gap in coverage,” Harmatz said.
The state has contended throughout this process that they have sent ample notices via phone, email, mail and online MyACCESS accounts to families whose coverage is up for renewal. Families should have received notice 45 days before the renewal date with instructions on how to renew.
In an October presentation to the Florida legislature, officials from DCF and AHCA said that kids with complex chronic conditions would get a “specialized processing team” and extra outreach efforts during this yearlong unwinding period.
DCF and AHCA officials did not immediately respond to questions from the Orlando Sentinel about what these specialized efforts entail, how they were ensuring no gaps in coverage and how they were verifying kids were not removed by mistake.
Children in Florida have “without a doubt” lost coverage due to paperwork snafus, U.S. Department of Health and Human Services Secretary Xavier Becerra said in an interview on Wednesday with the Sentinel.
Becerra previously sent a letter to DeSantis and eight other governors expressing concern about the large number of children who had lost coverage due to red tape.
“It continues to not just disturb but confound, I think, a lot of folks that some states have chosen not to address the loss of health care by so many children,” Becerra said. “… Denying that child those services is not just unconscionable, it’s a nightmare for the family.”
About 57% of the people in Florida taken off Medicaid over the last year were removed for procedural reasons, such as not returning a renewal form or incorrectly filling it out, according to nonprofit policy analysis group KFF.
HHS finalized rules on Wednesday that aim to keep kids enrolled, but they will take a full year to be fully implemented, Becerra said.
Feds “deeply alarmed” after 360k Florida kids lose Medicaid, CHIP coverage
For children deemed ineligible for Medicaid, there are other options.
Florida’s Children’s Health Insurance Program, KidCare, offers free, subsidized and full-pay insurance for kids whose parents make too much money to qualify for Medicaid.
When children lose Medicaid coverage their application is supposed to automatically be forwarded to KidCare for review. But as Florida’s Medicaid enrollment of children has shrunk by 460,000, KidCare enrollment only increased by about 55,000 in the last year.
It’s unclear whether many of the youths who lost Medicaid now have other insurance.
A state effort to expand KidCare to higher-income families, predicted to expand coverage to over 42,000 uninsured kids, was supposed to take effect Jan. 1 under a law passed by the Legislature last year.
Florida low-income children’s health insurance expansion delayed after paperwork issue
It was first delayed to April because the state failed to submit the required paperwork on time. Now, it has been delayed indefinitely while Florida sues the federal government over a new rule that would require states to keep children on Kidcare for 12 months even if their families miss a premium payment.
Florida filed the suit on Feb. 1. A hearing is scheduled for April 18 in federal court in Tampa.
Florida is one of just 12 states that lock out children if their families don’t pay premiums, a practice banned by the feds’ new rules issued Wednesday.
