Landon Booth is 10 years old. He’s a cancer survivor. And he’s being denied important post-chemo therapies.
Five years ago, he was diagnosed with leukemia. We first met Landon and his mom, Erin Booth, back in 2023, just after he lost his Medicaid coverage.
After the COVID-19 health emergency was declared over, states were allowed to disenroll people who it said no longer qualified. Landon was one of those kids, even though his mother, Erin Booth, said that by law, he should have been allowed to keep the coverage given his complex medical needs.
While Landon beat cancer, he’s been dealing with post-chemo treatment effects for three years, like osteoporosis, muscle atrophy, and a learning disability.
Booth said Landon needs a lot more speech, occupational, and physical therapy to heal than what his current state-run health insurance will cover.
“Everything's getting worse, like his motor skills are getting worse because he's not getting his therapies that he deserves,” said Erin Booth, Landon’s mom.
Landon is locked out of a state-run insurance called Children’s Medical Services (CMS). It's designed for children with disabilities or complex medical conditions. He doesn’t qualify because his parents make too much money, together bringing home about $70,000 a year.
Back in 2023, Gov. Ron DeSantis signed into law an expansion to Florida KidCare, which oversees children's health insurance programs like CMS. The expansion increased the income eligibility for qualifying families from households within 200% of the federal poverty line to families within 300% of the federal poverty line. In more practical terms, the expansion meant that $53,300 would no longer be the maximum to qualify for a family of three. That new benchmark would be $79,950.
Holding the expansion back is an ongoing lawsuit Florida filed against the Centers for Medicare and Medicaid Services. The state says the Centers overstepped its authority when it issued a rule mandating 12 months of healthcare coverage to families who miss monthly premiums. The Centers rule was approved under the then-President Joe Biden Administration. However, one year into President Donald Trump’s administration, the lawsuit has stalled.
Leaving families like the Booths without access to the needed care.
“Basically, it's getting more and more like, what the f—? What the hell? What is it gonna take to get it to the 300% pass so my son can get the care he needs?” Booth said.
What is the KidCare Expansion?
Two years ago, Florida legislators unanimously passed HB 121 to expand Florida’s KidCare premium tiered program.
Today, the program has premiums of $15 to $20 for those with incomes between 134% and 200% of the federal poverty level (FPL) or an income of $64,000 for a family of four. Those over the threshold are on the “Full Pay plan” program, which isn’t subsidized and costs families about $250 a month, or $276 with dental.
The expansion would help cover a gap in coverage for those whose income is over 200% of the FPL but don’t make enough to afford private insurance. The new income threshold rule would create a sliding scale of premiums that increases as families’ incomes grow, with premiums ranging from $17 to $195 for those with wages between 134% and 300% of the FPL.
The Florida Policy Institute has estimated that the KidCare expansion would benefit about 42,000 children across the state.
Why hasn’t the expansion happened yet?
Legally, plans to begin enacting the expansion went into effect at the start of 2024 after being signed into law, but the AHCA has yet to put the expansion into practice. The Centers for Medicare and Medicaid Services (CMS) did have to approve a waiver allowing for the increased eligibility to 300%, and it did that last December.
Preventing the expansion now, however, is a pending lawsuit by Florida.
In previous reporting, Central Florida Public Media learned that the state’s reluctance comes from CMS’s 2024 issued rules requiring states to provide 12 months of continuous eligibility for children under the age of 19 in Medicaid and in the Children's Health Insurance Program (CHIP), even if the family misses a monthly premium. The idea was to protect children’s healthcare or treatments from being interrupted by temporary missed payments. The rules were finalized in late 2024 under the CMS administrator Chiquita Brooks-LaSure, appointed by President Joe Biden.
“Florida faces actual and imminent injury to its sovereign interest in implementing and enforcing its laws, and in the form of unrecoverable monetary loss,” according to the court filings.
In 2024, the state filed a complaint with the Federal District Court in an effort to eliminate the 12-month requirement. The complaint was dismissed. A few months later, Florida unsuccessfully filed an appeal
In January of 2025, Florida filed a second lawsuit challenging the rule, with a new administration in place.
According to Florida’s suit, the Florida KidCare CHIP subsidized system works due to a combination of funds from the federal government, the state, and monthly payments. It therefore could not sustain itself, providing care for families who miss premiums. Florida argues that the 12-month provision would cost the state $1 million a month to cover disenrolled families.
Some experts believe Florida refiled the lawsuit, hoping the incoming Trump Administration would be more favorable to Florida’s position.
Since the January filing, both sides of the lawsuit have filed a "stay" or a pause to the litigation. Florida requested two before June. In September, both parties requested a stay to “explore other avenues.” The litigation is ongoing.
Why is the lawsuit still going?
“This has been a bit of a long road to get to kind of where we are, and there hasn't been much movement on it this past year, " said Brian Meyer, deputy secretary for Medicaid at the Florida Agency for HealthCare Administration, which oversees the funds for Florida KidCare.
In October, he stood before Florida Senators explaining why the expansion hadn’t happened.
“We are certainly proponents of the legislation we would have implemented long ago if we could,” Meyer said, referring to the lawsuit.
However, even with Florida’s lawsuit in play, experts don’t believe the litigation should be holding the expansion back.
“There is no specific rule or law, and there is nothing in the approval that states we need to wait on the lawsuit to be resolved,” said Melanie Williams, a policy director at the Florida Health Justice Project, a healthcare legal rights group. “Although the approval does say that we have to comply with the continuous coverage provision for the expanded population.
Central Florida Public Media reached out to AHCA, asking if a resolution with CMS was near, but it did not respond. AHCA has previously stated that it does not comment on pending litigation.
“Basically, it seems AHCA is trying to get a waiver on the continuous coverage provision by using the KidCare expansion law to try to push for federal approval to continue to not provide continuous coverage to the entire KidCare population (not just the expansion population,” Williams said.
At this point, it’s not certain why the lawsuit still persists for nearly a year despite both sides being agreeable.
There may have been some “wait and see” going on in the first part of the year as the Federal Government prepared its Big Beautiful Bill Act, Williams said. The Bill did have some changes to state children's health programs, but none that affected Florida’s lawsuit
Despite CMS’s continuous coverage rule being in effect, Florida has not maintained 12-month coverage for families that have missed the monthly payment. Just over 26,000 children lost coverage and did not return to the subsidized CHIP or the Full Pay plan during the 12-month period between October 2024 and September 2025, according to records from the Florida Healthy Kids Corporation.
Because of Florida’s seemingly friendly position to the federal government, it’s not expected that the lack of coverage will be enforced, Williams said.
“Our sort of assumption is that Florida is essentially going to get away with not implementing continuous coverage,” Williams said.
The families who are stuck waiting
Nine-year-old Amara, of Lakeland, isn’t like most kids. She’s curious about bugs and likes following them.
“Not just butterflies. She will follow beetles around, too,” said Melissa Supinger, Amara’s mother.
But that’s not the only thing that sets her apart.
Amara was born at 23 weeks and spent the first seven months of her life in the NICU. Today, she has Cerebral Palsy, as well as respiratory and GI issues. She’s also preverbal, which means she uses more sounds and gestures than words. She has a ventilator as well as a feeding tube.
She used to attend outpatient speech, occupational, and physical therapies in addition to a Prescribed Pediatric Extended Care (PPEC), a specialized medical daycare for medically fragile children that offers skilled nursing services and provides additional access to therapy.
Like with the Booths, all of that was covered by Children’s Medical Services (CMS), but in 2024, she was kicked out of the insurance program.
Supinger got a full-time teaching job just before states began redetermining Medicaid eligibility. In 2024, she received a letter saying that she and her husband made too much money for CMS. Together they bring home $80,000 a year.
Supinger signed Amara up for the Florida Healthy Kids Corporation Full Pay plan, which is the unsubsidized Florida KidCare coverage. Once she was on Florida Healthy Kids, Amara was given coverage through one of the managed care organizations, Simply Healthcare.
That’s when problems began.
“I really didn't have any issues at all when I had CMS,” Supinger said.
A few months after her new coverage kicked in, Supinger heard from the PPEC that Simply wasn’t paying for Amara’s sessions.
“When we would call them, they were like, well, even though it's authorized, we can't guarantee payment,” she said.
While we can’t know how many kids are in this situation, Amara is not alone. Other children with complex medical backgrounds who lost CMS and Medicaid and were referred to Florida Healthy Kids have had similar denials or lack of payments. In our serious Medically Unnecessary a series from earlier this year, Central Florida Public Media spoke with the father of Florida Healthy Kids, Steve Freedman.
Florida Healthy Kids is for healthy children who might break a bone; it isn’t for children with complex medical needs, Freedman said. The statutes that govern the funding for Florida Healthy Kids doesn’t include the benefits that medically fragile children would need.
“It talks about rehabilitation, but never, never habilitation. So it's not even a benefit that they could pay for,” Freedman said.
Supinger filed several grievances and called the Florida Healthy Kids Corporation. She was able to get Amara’s PPEC session paid for, but 10 months later, the cycle repeated and Simply stopped paying for the PPEC sessions. On top of that, Simply only covered eight sessions of therapy per year. That’s not enough for a kid like Amara, who needs speech, occupational, and physical therapies weekly to develop into a healthy adult.
“I have seen that she's definitely regressed since we've been out of outpatient therapy, especially when it comes to the physical therapy part with her. Her mobility, she falls easily. She's fractured her bones in her feet a couple of times now.”
The lack of therapy has taken a toll on her confidence, too.
“Her willingness to do the steps on the stairs. It’s like she's almost afraid to do it. She doesn't trust her body to do it,” she said.
If the expansion were enacted, Amara would be able to get the care she needs since the Supinger family would qualify for CMS under the new rules, but with the litigation not having an end in sight, it’s unclear when Amara would qualify.
“We want Florida to do the right thing and help the kids,” Supinger said.
During the October Senate Health Policy meeting, Deputy Secretary Meyer spoke more favorably about the end of the litigation, but didn’t give an exact timeline.
“We're hopeful that we can get somewhere amenable with the federal government here in the near future,” he said.
Meanwhile, in Orlando, Erin Booth is facing her own fight to help Landon with his post-cancer recovery.
Landon also receives coverage from Simply Healthcare and Florida Healthy Kids, and like Amara, he can’t get access to care, such as infusions against osteoporosis. Simply informed the Booths that the infusions weren’t medically necessary.
“It took my son's endocrinologist four times, point blank, to tell them he needs his infusions for osteoporosis,” she said.
They were successful, but like Amara, Landon doesn’t get the therapies he needs and is regressing. Booth isn’t sure what the future holds for Landon, but she’s given up hope that the promised expansion to care is ever coming.
“I don't think they're gonna do it. I think they're finding ways to prevent it,” she said.
