Breana Dion is angry.
She was mad when her immunocompromised 6-year-old daughter, Kamila, was kicked off the Medicaid Children’s Medical Services health insurance plan. She was livid when the letter informing her arrived at their home two days after the coverage was canceled. And she was full of rage when her new coverage through the Florida Healthy Kids Corp. denied payment for her daughter’s weekly infusion to boost her immune system.
“I feel like I'm fighting the world for my kid just to have a day of no illness,” Dion said.
PART 1: Kids with complex needs moved to state insurance that doesn’t help
Kamila is one of thousands of children who lost their Medicaid plan during the 2023-24 disenrollment period. After the nation's COVID-19 public health emergency was declared over, states were allowed to remove recipients from coverage. Some were terminated because they no longer met the financial threshold and others for procedural reasons – when the state was unable to make contact due to a change in address or phone number or computer glitches.
Consequently, families with children who have complex medical needs were among those who lost coverage. Some of Florida’s most vulnerable children, like Kamila, fell into a gap where the available insurance, Florida Healthy Kids, doesn’t cover their vast array of needs.
A rough start and a hard path
“It was extremely traumatic,” Dion said, recalling Kamila’s birth.
She was born black and blue, without a cry or a heartbeat.
For 9 minutes, doctors worked to resuscitate her.
After a few days in neonatal intensive care, Dion took Kamila home. Dion, a single mother, recalls placing her baby down for a nap and continuing to check on her every few minutes to make sure she hadn’t stopped breathing and turned purple.
“Every time I would put her down, she would stop breathing,” Dion said.
By the time Kamila turned 1 year old, she had been diagnosed with obstructive sleep apnea and a pediatric feeding disorder. Still, those diagnoses didn’t explain everything. Dion said when Kamila would get a cold, she’d stop breathing and become unresponsive.
Another challenge was the COVID pandemic. The chaos of that time slowed Kamila’s many diagnoses to come.
The first was tracheobronchomalacia, a condition in which the airway collapses, according to the Cleveland Clinic. Then, after a neurological evaluation, Kamila was diagnosed with autism.
The third and most crucial diagnosis, according to Dion, is hypogammaglobulinemia – a condition in which the body doesn’t produce antibodies.
“Kamila’s body does not know how to protect itself from viral, bacterial or fungal infections,” Dion said. “If she gets a really bad cold, or COVID, or anything like that, it could easily become sepsis.”
The cost of care
Disney toys and Harry Potter Lego sets are scattered about Dion’s home. Recently, the mother-daughter duo began working on a complete box set of Diagon Alley. The display picture features all the Alley shops from the Wizarding World.
But surrounding the Lego sets of franchise universes is an array of Kamila’s specialized medical equipment paid for, at one time, by Children’s Medical Services – the state insurance for kids with special health needs that require extensive preventive and ongoing care.
She has a nebulizer – a machine with a mask that takes liquid medication and turns it to mist for easy breathing absorption. She also has a specialized car seat; without it, she would stop breathing on extended drives. Additionally, she has daily antibiotics, a continuous positive airway pressure (CPAP) machine and a private duty nurse.
She also has an elopement bed as well as alarms on all windows and doors, often necessary with austism patients to prevent wandering behavior.
However, the most important medical asset in the family – at least to Kamila – is Lukah, her goldendoodle.
“He’s a sweet boy,” Dion said.
The dog was named after the Disney movie, “Luca,” which Kamila saw three years ago, when she was largely nonverbal. “Luca” was one of the first words she could say. Naturally, the name stuck.
Kamila also has multiple therapies, including feeding, speech, physical and occupational.
Among the many treatments and equipment – perhaps the most crucial and certainly most expensive – is a weekly infusion of immunoglobulins, proteins usually made by the immune system to combat illness.
The infusions are done at home every Friday through a needle in her belly.
Dion learned to perform the infusions from their nurse. It’s a two-hour process that leaves Kamila exhausted, and it sometimes takes two days to recover.
“It's hard on her,” Dion said. “Her body is just fighting really, really hard to play catchup.”
Kamila isn’t a fan of the process, but Mom said she has to. So Kamila troopers through it.
Each weekly dosage costs about $15,000, Dion said. For the year, it's more than $700,000.
When Kamila was born, she was enrolled in Children's Medical Services. The infusions, along with everything else, were covered.
Dion made less than $42,000 a year, meeting the income requirements for a two-person household. Kamila’s life was hard, but her needs were covered.
Or at least they were – until her coverage was terminated in September.
'Not Medically Necessary'
It was a shock to Dion, who didn’t receive a letter of termination until October, she said.
“This is gotta be a joke,” Dion said.
Given Kamila’s medical needs, Dion couldn’t conceive that coverage would drop without notification or some sort of bridge to an alternative.
Mistakes during the Medicaid disenrollment weren’t uncommon in Florida. About 58% of terminations during the first year were for “procedural reasons,” according to KFF. Some families never received notifications.
During the pandemic and prior to the Medicaid redetermination, Dion changed jobs and received a better salary. She believes that may have been the reason for the termination, but the mistaken timing of the notification left her furious.
Dion made back-and-forth phone calls with Children's Medical Services and Florida Healthy Kids, both of which kept referring her to the other.
Eventually, she got Kamila's coverage through the latter.
Florida Healthy Kids uses two private insurers, Simply Healthcare Plans and Aetna. Together the two manage 137,000 children in Florida – an increase of 52,000 after the Medicaid disenrollment began, according to Florida Healthy Kids.
Kamila was covered by Simply Healthcare.
“They’re terrible,” Dion said.
The insurance experience has been rough for Dion and Kamila. With her coverage beginning in September, Simply Healthcare denied many, if not most, of Kamila’s medical equipment and medications.
Dion said she’s received dozens of denials and that she’s put in dozens of appeals to no avail.
“It feels like my kid is on auto-denial,” she said.
The real blow came when Simply Healthcare denied Kamila’s infusions.
“They said it wasn't medically necessary, and that's when my head spun,” Dion said.
The insurer denied the payment process citing the reason as “high cost.”
According to the Florida Agency for Health Care Administration, “medically necessary” is defined as any medical good or service that is necessary to protect life or prevent significant illness. Additionally, the service or good cannot have a less-costly alternative available statewide.
That stunned Dion as she is well aware there is no alternative.
“If my kid doesn't have that one medication, it's literally life or death,” she said.
“The eye of the beholder”
In its partnership with Florida Healthy Kids, Simply Healthcare is considered a managed care organization.
Central Florida Public Media reached out to Simply Healthcare regarding how it determines medical necessity and who makes those decisions. The insurer stated only that it operates under Florida “contract requirements.”
“Our contracted managed care organizations have teams of clinicians that develop and maintain medical coverage guidelines and review procedures for medical necessity,” said Ashley Carr, a spokesperson for Florida Healthy Kids.
According to the Florida Association of Health Plans, which represents managed care organizations in the state, evidence-based medical guidelines are used to make determinations.
“MCOs employ highly qualified service authorization reviewers, often led by teams of experienced physicians, including pediatricians. These teams engage in ‘peer-to-peer calls’ with requesting providers and consult with external specialists to ensure comprehensive and informed decision-making during the review and authorization process,” the association said.
Industry experts say the process of reviewing medical necessity isn’t necessarily uniform.
“Each managed care company (private insurance contractor) handles things differently,” said Steve Freedman, creator of Florida Healthy Kids, the prototype system, in Volusia County in 1990. Today, he’s a professor of health policy at the University of South Florida and serves as an ad hoc member on the board of directors for Florida KidCare.
Freedman said there are guidelines for determining medical necessity, but ultimately, it’s subjective.
“Medical necessity, it seems like a simple term, but it's in the eye of the beholder,” he said. “If you're the beholder with cash, your view of that may be different than if you're the beholder of the patient.”
Freedman also noted that parents who believe an managed care organization has erroneously denied coverage can always file an appeal. However, a look at Florida Healthy Kids' rate of overturned appeals is not promising.
In 2023, there were 376 appeals, with 62% upheld. In 2024, after the increase in enrollment, there were 914 appeals, with 67% upheld.
- “Upheld” means the plan upheld its original determination (i.e., a denial of the appeal request).
- Likewise, “overturned” means the plan overturned its original decision and approved the appeal request.
- “Partially overturned” means the plan approved part of the appeal request. For example, a family might appeal a denial for a prior authorization for a service at an out-of-network provider. The plan may then review and determine that the service is approved, but not at the out-of-network provider.
Florida Association of Health Plans said that denials are “often” due to billing errors, which could include incorrect codes, missing information or exceeding the filing time limits.
“In these cases, providers can initiate a payment dispute and submit additional information, such as corrected billing information or documentation supporting medical necessity, facilitating claim resolution in most instances,” the association said.
Freedman said that after an appeal has been “upheld” twice, families can challenge the denial further by pursuing an independent review board. But it’s not something a lot of families do as the option isn’t made very “transparent.”
“Most families don't know that. Most providers don't know that, and so they think that the first ‘no’ is the final ‘no,’ ” Freedman said.
In Florida, AHCA contracts with Health Services Advisory Group Inc. as its External Quality Review Organization for Medicaid managed care programs.
“Fighting the world”
Kamila’s immunology doctors sent life-crisis letters and even called Simply Healthcare multiple times until they were finally successful in getting her infusions covered. However, over the six-month fight, the insurer only covered them for three months.
That doesn’t work for a child like Kamila, Dion said. She can’t miss her weekly infusions. Each one builds immunity upon the other. Missing one is like starting over, Dion said.
“It's completely uprooted Kam's life,” she said.
While Kamila was without infusions, she went into “lockdown mode” – no contact with the outside world. Dion said they’ve done that once before during COVID. It lasted six months. This time, the lapse in coverage was broken up and they went on lockdown twice. The first time for two months and the second time for one month.
“It's not worth exposure. Everywhere we go when she's not on her infusions, we come home and she's sick. And she's not just kind of sick. She's rushing-her-to-the-ER sick,” Dion said.
The tumultuous periods of lockdown, times with and without infusions, led to Dion losing her job.
Ironically, Dion's job loss requalified Kamila for Children's Medical Services coverage, which restarted in February.
The experience has left Dion worried about the future.
“Every parent with a medically complex kid has the same fear,” she said. “We’re scared of dying. We’re scared of not being here long enough until our kids are able to get the resources they need to keep themselves healthy.”
Dion is trying to figure out what’s next for Kamila. Dion said she’s considered moving to a state with more reliable resources, but moving a medically complex child isn’t easy. Also, a move doesn’t currently seem realistic with Dion's current job situation, she added.
Instead, Dion said she’s focused on finishing the Diagon Alley Lego set.
And, of course, on keeping Kamila happy and safe. Dion said she’s the only one equipped to do so.
“It's really eye-opening and terrifying to know that, God forbid, if anything happened to me or to insurance, my kid's life is going to mean absolutely nothing to this world,” she said.
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