“Your insurance is no longer valid.”
Breana Dion understood the words. What she didn’t understand was why and how she no longer had health insurance for her 6-year-old daughter, Kamila.
“I open up every piece of mail that comes for my kid. There’s no way. I didn't receive anything,” Dion said. “I don't let things like this slide with my kid. I can't. It's her life.”
When Dion says “It’s her life,” she means it. Kamila has a compromised immune system due to a rare condition. If Kamila gets a cold, it could cause sepsis, a condition that can be life-threatening.
Being without insurance just isn’t an option for her. But like thousands of other children, Kamila’s coverage (in this case Children Medical Services or CMS) was stripped from her in 2024 in a process known as Medicaid redetermination.
Because of Dion’s income, Kamila no longer qualified for CMS, which covered all her therapies and medications for a monthly premium of $15. After losing CMS coverage, Dion enrolled Kamila in another public health insurance program that she did qualify for - Florida Healthy Kids. Dion’s monthly premium is now $260. The problem is that Florida Healthy Kids doesn’t cover the vast array of medical needs Kamila, and many other children like her, require.
“It's extremely terrifying to know that the very companies that are supposed to be protecting and providing a service to you, that they're not even doing the bare minimum,” Dion said.
How did this happen?
Kids across Florida with complex medical needs began having coverage issues once states were able to review and terminate Medicaid coverage thanks to the end of the “continuous enrollment provision.”
At the start of the COVID-19 pandemic, Congress passed the Families First Coronavirus Response Act, which prohibited states from terminating people's Medicaid coverage until an end was declared to the health emergency.
During the pandemic, more people lost jobs, and health insurance, and Medicaid programs grew in size.
In Florida, Medicaid coverage increased from 3.4 million people in February 2020 to 5 million people in March 2023.
In 2023, the public health emergency was declared over. When that happened, states were once again allowed to review and terminate Medicaid coverage for people who no longer met the income requirements.
Between 2023 and 2024, Florida ended Medicaid coverage for about 1.4 million people. According to state data, around 500,000 of them were children. What most concerned experts about Florida’s disenrollment was how many people terminated from coverage were still technically qualified.
According to KFF, about 58% of Florida’s recipients were terminated for procedural reasons – a change in address, a change in phone number, computer glitches, or any other reason the state was unable to reach a recipient.
What happened after Medicaid disenrollment?
Florida KidCare is an umbrella program that has four separate public insurance bodies under it: Medicaid for children, Medikids, Children Medical Services (CMS), and Florida Healthy Kids. The last three are considered part of the Florida Children’s Health Insurance Program.
All four provide various levels of coverage depending on the income level of a recipient’s family. Following the Medicaid redetermination, Florida Healthy Kids saw enrollment increase by 50,000 members. It is unknown how many enrolled as a result of being dropped from Medicaid.
What happened to the remaining 450,000 kids is unknown, as no state program tracked them after Medicaid redetermination. Some of them could’ve ended up on their family’s private insurance after receiving new employment or gaining coverage through the Affordable Care Act marketplace. It’s also possible that some families still might not even know they’re without coverage, said Joan Alker, executive director of the Center for Children and Families at Georgetown University, which has tracked the Medicaid disenrollment across the country.
“Florida's path to Medicaid and CHIP for children was the least smooth, probably in the entire country,” Alker said.
One of the reasons why, was Florida’s decision to maintain four different insurance bodies for kids, Alker said.
“(Florida) also has different agencies running their programs, and they have barriers between the two programs of Medicaid and CHIP. Those choices have been in place for a long time. That meant we knew that children in Florida were going to have a harder time,” Alker said.
While it’s not documented what happened to the remaining kids who lost Medicaid coverage, what is known is that thousands of disabled children requiring lots of medical attention were referred to Florida Healthy Kids. Central Florida Public Media asked FHK how many medically complex children relied on its services. It said the number “is not readily available.”
“It’s easily in the thousands,” said Lynn Hearn, director of advocacy at the Florida Healthy Justice Project. The group is assisting families seeking legal counsel after having their Medicaid or CMS coverage terminated. CMS is a Florida insurance body for children with complex medical needs.
“We're talking the full range from a child born with a congenital condition that requires a ventilator, a trach in order to breathe and to live, all the way to the less dire, but still the serious condition of severe autism, with a child having extreme delays and needing multiple services in order to be able to dress themselves and function,” Hearn said.
After the Medicaid redetermination, CMS (which faced redetermination of its enrollment falling under Medicaid) saw a decrease of over 12,000 Medicaid enrollees between April 2023 and June 2024.
A gap in coverage?
While Medicaid is a fully subsidized insurance plan that covers all needs of children, the Florida Healthy Kids model uses a tiered premium system that scales depending on how far a family’s income is above the federal poverty line (FPL). Families with incomes between 134% and 200% above the FPL qualify for subsidized insurance while paying $15 to $20 a month. Families above 200% of the poverty line pay full price for Florida Healthy Kids-- $250 to $260 a month.
According to the Florida Agency for Health Care Administration, Florida’s tiered system was designed to guide a family, as their income grew, toward eventually buying private insurance.
Any upward movement in family income could threaten the status of a child’s insurance, in some cases leaving parents with no option but the Marketplace or full-pay, even if they cannot afford it. Monthly premiums can vary between $300 and $800 for plans.
“Florida continues to have these institutional barriers that make it impossible for families who are seeing a slight increase in their income, which is good news, but that should not come at the cost of losing their child's health insurance for any period of time,” Alker said. “Florida has a fairly unique and very complicated system of public coverage, especially if you're children, I think it's the most complicated in the country.”
Any upward movement in family income could threaten the status of a child’s insurance, in some cases leaving parents with no option but the Marketplace or full-pay, even if they cannot afford it. Monthly premiums can vary between $300 and $800 for plans.
“Florida continues to have these institutional barriers that make it impossible for families who are seeing a slight increase in their income, which is good news, but that should not come at the cost of losing their child's health insurance for any period of time,” Alker said. “Florida has a fairly unique and very complicated system of public coverage, especially if you're children, I think it's the most complicated in the country.”
A mismatch of coverage
That gap hit especially hard for Florida’s most vulnerable children – the medically complex. These families were relying on Medicaid and CMS. The former has no premium. CMS is offered under Medicaid and CHIP, meaning families could either pay no monthly premium (those on the Medicaid portion) or pay a base of $15 or $20 (on the CHIP portion), but have all medical needs covered. When disenrollment occurred, families who were now bringing in more income no longer qualified for Medicaid or CMS, leaving Florida Healthy Kids as the option.
That’s a disservice to kids with medical challenges, said Steve Freedman, the creator of Florida Healthy Kids. He currently serves on the KidCare board of directors and is a professor of public health policy at the University of South Florida.
“As you might expect, Florida Healthy Kids has delivery systems that are designed for healthy kids,” Freedman said. “Families who have kids that have special needs get disenrolled from Children's Medical Services because they're no longer eligible for Medicaid, and they get moved over to Florida Healthy Kids Corporation. The systems are different. It's not good.”
Freedman created Florida Healthy Kids back in 1990 and the program got its trial run in Volusia County, according to AHCA.
“The whole idea was that there were parents who had money in their pockets, they wanted to buy health insurance for their kids, but the private market was just too much, and they weren't eligible for Medicaid,” Freedman said.
Thus Florida Healthy Kids was born. But something it was never intended for was for families of low income with chronically ill children. The legal coding of Florida Healthy Kids was not designed to accommodate children who require more attention and resources, Freedman said.
“Medicaid does the best job of covering kids with special health care needs because the feds have said you have to cover everything that they need. That's the only program that does that,” Freedman said.
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