Florida KidCare insurance expansion not implemented 3 years after DeSantis signed bill

Nikki Frank of Jacksonville is the mother of a child with complex medical issues. A 2023 state law expanding the Florida KidCare insurance program should have allowed him to get low-cost comprehensive health insurance coverage, but because that law has not yet been implemented by the state government, Frank was forced to quit her public education job to make him eligible for the robust coverage KidCare provides.

“My son is 9. He was born with a heart defect, along with other health issues, and I guess birth defects, for lack of better words,” Frank told the Florida Independent in a phone interview. In addition to the heart defect, Frank’s son has been diagnosed with eye problems, autism, ADHD, and an underdeveloped leg that required partial amputation when he was 1 1/2.

While Frank’s son was initially covered by Medicaid, in the fall of 2024 his coverage was terminated because, they were told, the family made too much money.

“Because we make too much money, we didn’t qualify for the portion of KidCare that is subsidized, that would allow us to keep him on CMS [Florida’s Children’s Medical Services Health Plan], so we had to go to the full-pay option,” Frank explained. However, that plan was not comprehensive enough to cover her son’s medical needs. 

While subsidized plans cost $15 to $20 a month, nonsubsidized ones run about $250 a month.

Frank, who had worked as a paraprofessional for her local public school district, found herself in a catch-22. “Ultimately, I ended up quitting my job, so that way we fell back under the income limit, and he was put back on CMS,” she said, but that left the family struggling financially. “If I don’t work, then we’re barely scraping by and can barely afford our bills. If I do work, that puts us over, and then we’re back in the same boat we were this time last year.”

Florida KidCare provides health and dental insurance to children in the state, through Medicaid, MediKids, Children’s Medical Services, and Florida Healthy Kids plans. Under Medicaid and the federal Children’s Health Insurance Program, families earning below a certain level are able to obtain free or heavily subsidized plans; families earning above that level can enroll in unsubsidized full-pay coverage.

In the spring of 2023, the Florida Legislature unanimously passed H.B. 121, a bill to expand KidCare to raise the eligibility threshold for subsidized plans from 200% of the federal poverty level to 300%, or from about $55,500 annually for a family of four, according to the news site Florida Politics at the time, to about $83,250. The bill also created an income-based tiered system to determine the premiums families would pay for their kids’ plans. Republican Gov. Ron DeSantis signed the bill that June.  

“Every child in Florida needs access to vital health care services and providing coverage for children of families struggling to make ends meet is one of the best investments our state can make,” Republican Jimmy Patronis, then the state’s chief financial officer, said in a statement at the time. “This bill expands Florida KidCare coverage and ensures families have access to affordable health insurance for children in need.”

A legislative staff analysis published when the bill was signed estimated that more than 42,000 more kids would be enrolled in the program by state fiscal year 2026. 

About 403,000 Florida kids, or 8.5%, were uninsured in 2024, according to a Georgetown University Center for Children and Families analysis, giving the state one of the highest uninsured rates in the country. 

In December 2024, the Centers for Medicare and Medicaid Services approved Florida’s application to expand the program. But due to a dispute with the agency about whether the state could kick kids off of their policies in the middle of the year, the state opted to delay implementation and filed a series of lawsuits challenging the federal rules barring mid-year cancellations by states. 

Scott Darius is executive director of Florida Voices for Health, a nonprofit group working to improve healthcare. Darius told the Florida Independent that the state-federal dispute continued after the end of the Biden administration and the beginning of the second Trump administration: “Here we are months later, and the state has ended their particular lawsuit over this. We still haven’t gotten the final approval that we need to make it happen.”

“I think who gets hurt the most, obviously, those families who are now paying out of pocket,” Darius said. “I think particularly those families that have kids with chronic conditions and disabilities, those are the folks who need the most help, because it’s not just about the medical care; it’s all the supports and services that they need, all the ongoing therapies and things like that that give them the best chance to live full and happy lives. Those families being left out of what we call the CMS program, but as part of our Medicaid and CHIP Florida KidCare program, that’s, I think, the most disheartening part.”

For Frank and her husband, the new law should mean she could work and also obtain the insurance coverage their son requires. “It’s going to depend on the income thresholds, but it is a very good possibility that, yes, if this were implemented, that both of us could work and still get the healthcare coverage that he needs in order to keep him healthy and give him the best quality of life,” she said. 

In response to a request for comment for this story, a DeSantis spokesperson referred the Florida Independent to the Florida Agency for Health Care Administration, which did not respond. According to the Florida Phoenix nonprofit news site, Florida Medicaid director Brian Meyer told a legislative committee in April that the DeSantis administration is continuing to try to reach an agreement with the Centers for Medicare and Medicaid on coverage requirements before implementing KidCare expansion. 

Melanie Wiliams, policy director for the legal group Florida Health Justice Project, said nothing is really stopping Florida from implementing the expansion immediately. 

“Everything’s ready to go, and it’s just a decision from the agency head to say, Go ahead and start implementing this and providing this coverage, and they have yet to do that,” Williams told the Florida Independent. “They’ve told reporters, and they’ve also said it in committee hearings multiple times, that their hands are tied because of an unrelated case that was moving through with federal CMS [Centers for Medicare and Medicaid Systems], and that case was actually dropped in, like, February, and now there’s been a new case filed, and, you know, it’s not directly related to the expansion of KidCare, but rather this whole issue of states being required by federal CMS to provide continuous coverage for kids, even if their parents fail to pay a premium. And you know, although that’s related, because the subject is KidCare, that doesn’t stop them from implementing the expansion while they continue to go back and forth with the federal government on that.”

The Florida Health Justice Project and the National Health Law Program filed a lawsuit in March aimed at forcing the state to immediately implement the expansion. “Hopefully we can right this ship through the judicial branch,” Williams said, though that could be a lengthy process. She said it was unclear whether any of the families who should have been covered under the law will have any legal recourse to recover medical costs.

Erin Booth of Orlando has a 10-year-old son who survived leukemia but faces ongoing side effects from the treatment. In April 2024, he was kicked off of the Children’s Medical Services plan because the family’s income was too high — about 250% of the federal poverty level. They enrolled him in an unsubsidized KidCare plan. “KidCare Healthy Kids full-pay doesn’t cover his services for PT, OT, and speech, which — one of the side effects from his treatment, it’s almost like complex symptoms, so he had to relearn how to walk, talk, pretty much start all over again,” Booth said in an interview. “Now we’re 2 1/2 years in, and [he] has barely had any speech, OT, and physical therapy. Now we keep getting denial letters.” 

Booth hopes the expansion happens soon, so her son can regain subsidized Children’s Medical Services coverage with unlimited speech, occupational, and physical therapy. “He basically fought for his life to live,” she said. “Now he can’t get the care to have a normal childhood.”