Florida holds the key to providing relief for Florida families struggling with mismatched public health insurance and providing disabled or chronically ill children the coverage they need.
Whether the state will use that key remains to be seen.
In 2023, legislators unanimously passed a bill that would expand the eligibility of subsidized KidCare from 200% to 300% of the federal poverty level. It was supposed to go into effect at the start of 2024. It still hasn’t.
“I have people calling me every day, ‘I need health insurance for my kids,' ” a frustrated state Rep. Robin Bartleman, D-Fort Lauderdale, said during a House Health Care subcommittee meeting in February. She sponsored the bill for KidCare expansion.
The Florida Agency for Health Care Administration, which oversees the state’s children's health insurance program (CHIP), has yet to enact the expansion due to an ongoing lawsuit the state filed against the federal government in January regarding rules the Centers for Medicare & Medicaid Services established in November.
PART 1: Kids with complex needs moved to state insurance that doesn’t help
PART 2: Florida Healthy Kids won’t cover drug for chronically ill child
PART 3: Why Florida Healthy Kids doesn't work for many medically vulnerable kids
“In order to implement the expansion as passed, I believe, we need to let the litigation play out against the federal government,” AHCA Medicaid deputy secretary Brian Meyer said during a House Health Care subcommittee meeting in February.
AHCA, reached regarding the lawsuit and the delayed expansion, stated it would not comment on open litigation.
Court filings show the state has been reluctant to enact the expansion due to CMS’ rules requiring states that rely on a premium system to provide 12 months of coverage to families that miss a monthly payment
The state contends that would amount to "tens of millions of dollars" whie the federal goverment expands an entitlement "potentially at no cost."
“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.
Families wait for rescue
Meanwhile, families waiting for the expansion are stuck in limbo with no date established as to when relief may come.
“Just make it happen,” Orlando resident Erin Booth said.
Her 9-year-old son, Landon, is a cancer survivor, but he lost Medicaid coverage just as his recovery began. As a result, he receives coverage through a CHIP program known as the Florida Healthy Kids Corp., but he’s not able to get the therapies he needs.
Since last year, Booth has seen her son deteriorate in strength. Landon has osteoporosis and muscle atrophy as a side effect of chemotherapy. He’s also experiencing mild neurocognitive issues with his memory and attention. Landon used to really love playing soccer outside. These days he can’t put on a seat belt by himself.
Regular visits to occupational, physical, and speech therapists could help. But his insurance only covered eight sessions of each. That was eight months ago.
Since then, Booth has been fighting an uphill battle trying to get Landon his therapies but she believes the state is much like a wall on his road to recovery.
“I believe he would make bigger strides if he didn't have his therapies taken away,” Booth said.
Last year, about 500,000 children lost Medicaid as part of a national Medicaid redetermination period after the COVID-19 public emergency ended.
Florida agencies did not track what happened to the vast majority of children who lost coverage, but Florida’s program did experience an increase of about 80,000 at the time of redetermination. State data does not distinguish whether those children joined CHIP after losing Medicaid, it was a change in status, or they were new arrivals from outside the state,
What experts have been able to confirm is that during the redetermination period, thousands of disabled children who lost Medicaid or Children’s Medical Services (CMS) – a low-premium public insurance for children with special needs – were referred to Florida Healthy Kids. The program’s statutes do not cover the expensive, habilitative services many of those kids need.
How would the expansion help Florida families?
That’s where the 2023 law (HB 121) comes in. The measure expanded Florida KidCare's premium-tiered program.
Today, Florida KidCare has premiums of $15 to $20 for those with incomes between 134% and 200% of the federal poverty level. Those over the threshold are on the “full pay plan,” which isn’t subsidized and costs families about $250 a month.
Currently, there is a gap in coverage for those whose income is over 200% of the federal poverty level. KidCare requirements provide subsidized public health insurance for those making an income within 200% of the poverty level.
The law increases the eligibility threshold from 200% to 300% above the poverty level. The expansion also serves families with disabled children by making eligibility for Children's Medical Services more accessible. The expansion would create a sliding scale of premiums that increases as families’ incomes grow, with payments of $17 to $195 for those with wages between 134% and 300% of the poverty level.
The new premiums were designed to increase as a family becomes more financially self-sufficient and prepared them for a transition to private insurance.
A gap in coverage
The idea behind the expansion was to not punish low-income families for increasing their wages, but to provide an easier transition into the private health insurance market while avoiding the gap, said Joan Alker, executive director of the Center for Children and Families at Georgetown University.
The federal government's 12-month coverage rule is also meant to help avoid gaps in coverage, Alker said.
“A lot of these families can't tough it out. I mean, they've got to have coverage. Even one week of lapsed coverage is a crisis,” Alker said.
Jasmine Smith, a Leesburg mother, almost experienced a crisis this month when the Florida Healthy Kids coverage for her 5-year-old child, Omari, became inactive.
Omari has a number of disabilities. He was born with a brain injury that left him with breathing and feeding problems. He also has spastic cerebral palsy. Omari received coverage through Children’s Medical Services until the start of this year after Smith was considered no longer eligible.
Smith was scared. Neither she nor her son can afford any gap in coverage. His 24-hour private duty nurse and feeding formula, alone, cost $20,000 a month, Smith said.
Smith was able to get Omari coverage under Florida Healthy Kids in February for his many medical needs, but there was a problem.
Smith was late on her monthly payment.
“I guess I wasn't understanding the payments, how they were set up,” Smith said.
Believing she had to pay her $250 premium before March 1 to receive coverage for that month, Smith paid on Feb. 25. The premium for March was due Feb. 14.
The insurance became “inactive,” which means Omari was covered but Florida Healthy Kids wouldn’t pay for any services. As a result of the late payment, Omari had no coverage for the first week of March.
Smith handled the one-week lapse with financial assistance through the Florida Birth-Related Neurological Injury Compensation Association, which covered Omari’s 24/7 private duty nurse, but it didn’t cover a lot of other things.
“Like tracheostomy supplies, gastrostomy feeding tube supplies, his therapies, doctors appointments, feeding formula,” Smith said. “It's just very frustrating when he can't receive that because of miscommunication on insurance.”
Florida's fight against CMS
The new law was set to take effect in January 2024, but Florida filed a lawsuit against CMS after the federal agency published an FAQ in late 2023 that listed the missed-payment requirement. A district court dismissed that case in May 2024. Florida filed an appeal, then dropped it after CMS published finalized rules regarding the 12-month provision. In January, Florida refiled a lawsuit against the new finalized rules.
Alker, with the Center for Children and Families, said what the state is doing isn’t just harmful to families in need of relief. "The critical issue right now is that they are violating the law,” he said.
In January, outgoing CMS administrator Chiquita Brooks-LaSure sent a letter to AHCA informing the state agency that it had yet to demonstrate compliance with the new rules, thus terminating coverage of Floridians who were otherwise eligible for 12 months of coverage.
“States that are not in compliance with federal regulations are subject to further compliance action, including potential withholding of federal funds,” Brooks-LaSure wrote.
Florida Healthy Kids, the most prominent public insurance entity under the state's CHIP umbrella, operates in a cost-share system. The federal government pays for 70 cents of every dollar spent on health care. The remaining 30 cents is paid through a combination of state funds and monthly premiums.
Any funds withheld by CMS would hurt Florida greatly, said Lynn Hearn, the director of advocacy at the Florida Health Justice Project.
“We're talking about the very significant contributions that the feds make to the CHIP program,” Hearn said. “It's a very high-match rate, and it would be a hit, a significant hit to Florida's budget for that program.”
The 12-month stipulation was put in place to protect children from sudden gaps in coverage.
“Continuous care is critical to a child’s success, especially the kids we’re talking about, with complex medical needs,” Hearn said. “Even if we’re talking about those with diabetes or asthma, if their family is in a car accident and they miss a month premium, those kids can’t miss a month, and you don’t want them to miss access to medicine.”
Yet, Florida remains steadfast in its argument against the stipulation.
"Unrecoverable monetary loss"
Steve Freedman, the creator of Florida Healthy Kids, is now a professor of public health policy at the University of South Florida and serves as an ad hoc member of the board of directors on Florida KidCare. He agrees with Florida’s position.
“The very DNA of Healthy Kids Corp. was family participation. So the whole idea of families saying they're going to participate and then not participating is it's fundamentally antithetical to why it was founded to begin with,” Freedman said.
Alker disagrees with the state.
“It's a pretty disingenuous argument,” she said.
Alker points to Florida’s 2024-25 state budget and Florida KidCare's predicted expenditures of $744 million. During a February budget agenda meeting, AHCA reported Florida KidCare had a projected overall surplus of $43 million.
During the meeting, AHCA budget analyst Bobby Jernigan was asked why there was such a large surplus.
According to AHCA, the discrepancy comes from enrollment estimation versus real-time enrollment. Estimating conferences take place multiple times a year to help AHCA realign its budget with its current enrollment list.
“We find that those estimates are slightly off; either environment or economic changes that take place will impact those enrollment numbers,” Jernigan said.
Part of the reason there was an overestimate was due to AHCA preparing for the KidCare expansion, but that wasn’t the main reason, Alker said.
“It was more the redetermination process,” she said. “It was the expectation that as children became ineligible for Medicaid, they would roll on to CHIP. But instead, we had 500,000 children come off of Medicaid, and (80,000) go onto CHIP.”
In the state’s argument against CMS and the continuous coverage stipulation, AHCA reported in court filings that the 12-month stipulation would cost the state $1 million a month to put in place.
Florida's 2024-25 fiscal budget was $118.6 billion. Gov. Ron DeSantis’ proposed budget for the upcoming fiscal year is $115 billion.
“When you have a budget like the size of the state of Florida's and the federal government is paying the vast majority, that this loss of 0.01% of their budget is going to cause them not to be able to balance their budget, that just doesn't make sense,” Alker said.
It also doesn’t make sense to those waiting on the delay.
"The care to be a kid"
After DeSantis signed HB 121 in June 2023, AHCA submitted a waiver to CMS seeking the necessary federal funds that would enable the expansion. In December 2024, CMS approved the waiver with the expansion to be effective immediately. In a letter, CMS wrote that Florida would need to respond with a plan to demonstrate compliance with the continuous eligibility requirement. CMS sent a reminder Jan. 2 that funds would be withheld without compliance.
On Feb. 4, a member of the state House of Representatives asked Brian Meyer, the AHCA Medicaid deputy secretary, if AHCA was aware of the January letter and if communications with AHCA had occurred.
“We have not responded to that communication yet but we do anticipate responding in the near future,” Meyer said.
At the time of the January CMS letter, the Biden administration was still in power. It was thought that with the Trump administration, a friendlier ally to Florida leaders, communication between AHCA and CMS would begin, Hearn said, but that seemingly hasn’t happened.
“The litigation that Florida has filed has had the result of stopping communications between Florida and CMS,” Hearn said. “The agency that it has sued presumably would have a friendlier reception under the current administration. It's a little bit of a mystery as to why Florida would want to continue with this litigation.”
Scott Darius is the executive director of the Florida Voices for Health. The organization is an advocate for families who lost Medicaid. Darius said Voices for Health hears from frustrated families wondering why the state hasn’t enacted the expansion yet.
“I think they've kind of been holding it hostage,” Darius said. “So now you have a whole host of families who would otherwise qualify for this for Florida KidCare under the 300% expansion, but, yeah, that option is not available to them until we take that step.”
Hearn pointed out that a reason for the ongoing litigation could be the national implications of a Florida victory. Should courts side with Florida regarding its stance on the 12-month eligibility protection, that would strike down the rule for all states that charge a monthly premium. According to KFF, 16 other states have monthly premiums.
“It appears that Florida won't be satisfied with waiving the rule for its own purposes, and it's trying to bring it down in totality,” Hearn said.
In February, the U.S. House of Representatives passed a budget resolution targeting cuts to Medicaid, as much as $880 billion or more over a decade, according to KFF. Both House Speaker Mike Johnson and President Donald Trump have expressed sentiments they don’t want to see Medicaid cut. But the hasty changes in Washington, D.C., have experts like Hearn worried about what could happen to Florida’s CHIP.
“CHIP is one of the programs that the committee tasked with these cuts is responsible for overseeing, and so CHIP is definitely vulnerable,” she said.
And while federal and state leaders figure out what happens next, children like Landon are stuck waiting.
Booth, his mom, is a generational Floridian. She was a believer in the DeSantis administration, too, but she can’t reconcile with everything that’s happened over the past year and the current state of CHIP in Florida.
“I never dreamed this would be happening. I always thought Florida was good for taking care of the people. But I guess not,” Booth said. “It's not like these kids are asked to be disabled. They just want to be a kid. So why are you denying them the care to be a kid?"
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