At 9 years old, Orlando resident Landon Chase has survived some pretty serious and scary things; cancer and chemotherapy are at the forefront.
His big challenge now, though, is healing from chemo, a process his mom, Erin Booth, says is being hindered and made more difficult by Florida’s children's health insurance program.
Landon was on Medicaid coverage during his cancer treatment, but like 500,000 other children in the state, he saw his coverage taken away during the Medicaid disenrollment period. Now, Landon and about 137,000 other children are receiving coverage through the Florida Healthy Kids Corp., which the state recommended for low-income families who didn’t have access to health insurance from employers and couldn’t afford federal marketplace insurance.
The problem? Florida Healthy Kids is as advertised. It’s for healthy kids, not children recovering from cancer.
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
“How is that fair? How can you judge a kid that has multiple disabilities? How can you not give the same level of service?” Booth said.
Landon and many other medically vulnerable children like him were referred to Florida Healthy Kids and found the insurance doesn’t cover what they need for their day-to-day lives.
The Booth story
Landon was playing soccer with a friend his age. He tried running to keep up, but quickly got winded. Instead of playing, he walked back to his mom.
“I’m just a little different, I think,” Landon told her.
Landon is different. Chemo affected his muscle growth and balance. According to his most recent physical therapy evaluation, he has the strength and balance of a 4-year-old.
“He has trouble with pants, too. I have to dress him basically from head to toe because he can't lift up his arms,” Booth said.
Therapy could help with that. His last session was eight months ago. Landon’s Florida Healthy Kids plan allowed for 24 sessions and doesn’t cover anymore for the year.
“All this could be prevented. We could be done by now if he just had his therapy,” Booth said.
Booth has had her fill with Florida and insurance problems. Department of Children & Families Services was tasked with managing the Medicaid disenrollment period between 2023 and 2024. States were allowed to begin terminating coverage for people whose incomes grew outside of the eligibility following the COVID-19 pandemic.
That was scary for Booth. Landon had been diagnosed in 2021 and was still receiving chemo in 2023. Booth and her husband had just bought a house in Orlando and were financially stable, but they were grateful they at least had Landon on Medicaid.
Prior to disenrollment, DCF said medically complex children would be assessed in 2024 – toward the end of the disenrollment period. However, Landon was among the first waves of children told they would lose coverage. It was a monthlong scare for the family as he went through chemotherapy. Booth was able to get him back on Medicaid by pointing out the mistake, and it covered the rest of his chemotreatment.
But Landon’s Medicaid coverage came to an end just as his road to recovery began. DCF finished its disenrollment period and finally sent Booth a termination notice.
Chemotherapy left Landon weakened with osteoporosis and muscle atrophy. This year, he was diagnosed with a mild neurocognitive impairment to his language, memory, attention and coordination.
Landon needs a lot of time in different therapies -- occupation, speech and physical -- not just to recover but to play catch-up with peers.
“I really feel like him missing out on his (occupational therapy, physical therapy) and speech therapy has really caused these learning disabilities to show up,” Booth said.
The issue, Florida Healthy Kids only pays for eight sessions of each therapy. That’s not enough for a recovering cancer patient. Also, those eight sessions have to be completed in 60 days. Any appointments missed cannot be rescheduled after those 60 days. Landon is on a full-pay plan, which means his parents pay $260 a month for coverage, which accounts for his therapy co-pays, but that’s about it.
Now, Landon is stuck in a coverage gap, unable to get the therapies he needs to recover. Booth considered raising money to pay for the therapies out of pocket, but Booth was told that, since Landon is covered by the state, licensed practitioners can’t accept funds from another source.
“I put in for appeal. They did not yield. They denied it, saying his therapies weren't medically necessary,” Booth said.
Booth is happy that Landon has insurance, but she knows Florida Healthy Kids coverage is a mismatch.
“The full-pay plan is for kids that are, like, ‘Hey, I broke my arm. I just need eight sessions to get back to normal,’ ” Booth said. “It’s not for disabled kids like Landon who need ongoing support for years.”
She’s right, according to the creator of Florida Healthy Kids, Steve Freedman.
The dawn of Florida Healthy Kids
Freedman is a professor of health policy at the University of South Florida and an ad hoc member of the board of Florida KidCare, which is the umbrella organization of Florida’s four children's health insurance entities, including Florida Healthy Kids.
In the 1980s, Freedman observed that parents with low income were choosing not to insure their children because there was no affordable option.
In 1991, Florida was among the states with the most uninsured children. Across the country, 20% of children did not have insurance. In Florida, that number was 24%, or about 600,000 children, according to the National Library of Medicine.
“Nationally, a lot of kids who were falling out of health insurance and their parents were betting that, because they're essentially healthy, they could live without health insurance, and that was not a good bet for a lot of kids,” he said.
Freedman pitched the Florida Healthy Kids program to the Legislature in the late '80s. An experimental trial run began in Volusia County in 1992 with 50,000 children, about 15,000 of whom had no insurance, according to the Associated Press.
It was offered as a means of covering routine checkups, hospitalizations and outpatient care. Parents either paid nothing or paid on a sliding scale of premiums up to $60, depending on income, with the average premium about $12. The program was a success and became the model for children's health insurance throughout the state.
Later, it became a model for the country, too. In 1997, the Congress dolled out its Children's Health Insurance Program (CHIP). Florida Healthy Kids was grandfathered into the program, but certain changes were required to fall in line with federal mandates, such as the need to take care of children with special medical needs. Florida’s solution was adding a new program to take care of this population, Children Medical Services (CMS). Florida Healthy Kids remained as it was intended, for healthy children.
"Why Florida Health Kids is not a good match"
The DNA of Florida Healthy Kids is a cost-share system, Freedman said. The federal government covers 70 cents of every dollar spent. The 30 cents is covered by a combination of the state and families, who pay a monthly premium, compared to Medicaid which is split 50-50 by federal and state.
The governments set the money aside to take care of kids who require help recovering in the short run, Freedman said.
States’ CHIP programs receive funding from Title XXI of the Social Securities Act, established in 1997. The law expanded child health assistance to uninsured, low-income children.
To receive funding, states must submit their individual plans to the federal government.
Florida’s plan, the statute that governs Florida Healthy Kids, doesn’t call for the funds to be used on children with complex medical needs, Freedman said.
"The statute itself goes through and lists each of the benefits that can be offered under Title XXI. It talks about rehabilitation, but never, never habilitation. So it's not even a benefit that they could pay for,” Freedman said.
In other words, it wasn’t written with those children in mind who need thousands of dollars worth of medical services for chronic illness or disability.
Yet after the 2023-24 Medicaid disenrollment, Florida Healthy Kids was the default referral for all children, including those who previously relied on Medicaid or CMS. Those groups receive funding from Title XIX of the Social Securities Act, which does account for children with disabilities or chronic illnesses. However, Medicaid and CMS were designed for families who make less money than those who qualify for Florida Healthy Kids.
“When you talk about the Healthy Kids Corp., you're talking about an entity that was founded to help parents, and it wasn't intended to be a universal subsidy for kids,” Freedman said. “There's two different programs. … One is for the poor, who cannot pay for insurance, and the other is for people who could pay for insurance. And to apply the rules of one to the other is just ... it's, it's an intellectual disconnect at a minimum.”
CMS also receives a combination of Title XIX and Title XXI funding.
Outside of legal statutes, there’s a second issue: Medically complex kids aren’t adults.
That may seem like a given. But Florida Healthy Kids contracts with two private insurers to cover its recipients: Simply Healthcare and Aetna. These are referred to as managed care operators (MCO).
According to Freedman, MCO claim reviewers refer to “adult models” when determining the eligibility of services for kids.
“The adult model is the one that insurance companies use because that's what their primary business is,” Freedman said.
That matters because services like therapy are used predominantly by adults in a “rehabilitative manner” and are not used “developmentally” or “habilitative” manner.
A child who has never spoken requires therapy to develop throughout life and gain skills, Freedman said.
“There's nothing about standard insurance that is habilitative. It's all rehabilitative. So the insurance committee may not recognize at all the fact that I need speech therapy, because I've never had the speech so there's nothing to rehabilitate,” Freedman said.
Central Florida Public Media reached out to Simply Healthcare and Aetna for comment on how it determines approval or denials in services. Neither responded.
The rules explain why a child like Landon may not receive approval for more than eight sessions worth of care per therapy, but the rules are also inconsistent as some families have experienced.
The Smith story
The beginning of Jasmine Smith’s story is familiar.
Her 5-year-old son, Omari, is disabled. He was born not breathing due to hypoxic-ischemic encephalopathy. He’s had breathing problems ever since. He was also diagnosed with spastic cerebral palsy. He requires a lot of care, including private nursing; speech, occupational and physicial therapy; and pureed formula foods.
The cost per month of the food and the private nurse is about $20,000, Smith said.
Omari was covered by the state since he was born. Until Jan. 1, Smith relied on CMS.
Then she heard their insurance was no longer active from one of Omari’s medical equipment suppliers.
“That took me by surprise because every year I've known for his insurance just to renew on its own,” Smith said.
Over the next couple of weeks, Smith spent hours on the phone and driving to offices to figure out what had happened. She eventually got in contact with a DCF office in Tavares, where she learned about Medicaid disenrollment and how a letter informing her of Omari’s disenrollment had been sent to an incorrect address.
Smith, a single mom, is a nursing student and can’t pay for Omari’s coverage without help.
“My back was against the wall,” she said. “I was a bit emotionally drained with the situation.”
Through her pursuit of why she lost coverage, Smith learned about Florida Healthy Kids and applied. In the weeks waiting for approval, Omari was able to receive coverage through the Florida Birth-Related Neurological Injury Compensation Association.
But by Jan. 18, Omari’s application was approved for coverage. It would begin Feb. 1.
And that’s where the story changes.
“It basically covers all the things that he needs,” Smith said. “His doctor's appointments, his private duty nursing, his therapies, just pretty much everything and everywhere.”
It also covers Omari’s pureed formula.
Like Booth, Smith is paying $260 on the Florida Healthy Kids full-pay plan. In Omari’s case, unlike Booth’s and that of some other families with children who have complex medical conditions, the insurance appears to be working.
But why the different treatnents?
Central Florida Public Media reached out to Simply Healthcare and the Florida Association of Health Plans regarding how these decisions are made. Both chose not to comment.
Florida Healthy Kids spokeswoman Ashley Carr responded with a bulleted list of practical guidelines for MCOs:
Insurer shall follow written policies and procedures and practice guidelines, for making benefit determinations, including processing requests for initial and continuing authorization for services.
"The insurer shall adopt practice guidelines:
a. That are based on valid, reliable clinical evidence of providers in the relevant field.
b. Consider the needs of enrollees
c. In consultation with contracting health care professionals.
Carr didn’t address why one disabled child may be approved for services over another.
Freedman, the Florida Healthy Kids creator, said a reviewer in the MCO determines if the patient’s needs are medically necessary. The reviewer could be a physician or anyone the company designates. Freedman said the process is very subjective.
“Each MCO handles things differently. They could have an (advanced registered nursing practitioner) at the front end of claims or they could have someone who just knows how to say no at the front end of that,” he said.
Without seeing Smith’s case and knowing who was involved in the review, he can’t say for sure, but there’s another element he considered.
“I would say that the family that got the nutrition (formula) was lucky,” he said.
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