ORLANDO, Fla. — During the COVID-19 pandemic, Erin Booth’s 5-year-old son was diagnosed with leukemia. She and her husband qualified for Medicaid under a program enacted during the health crisis and that federal insurance provided Landon all the medical treatment and therapy he needed.

The chemotherapy damaged Landon’s still-developing brain and body, requiring an army of specialists to help him overcome those developmental problems. He went to speech therapy, physical therapy and occupational therapy almost daily.

But after President Joe Biden declared an end to the public health emergency, the Orlando couple’s son lost that Medicaid coverage, as did nearly 600,000 other Florida children. All had been eligible under the “special waiver” enacted during the pandemic but lost it when that ended under a process known as the “unwinding.”

The state steered the Booths to KidCare, the federally funded children’s health insurance program run by the state that offers lower-cost health insurance for families who cannot afford private insurance but earn too much to qualify for Medicaid.

But the Booths also earn too much to qualify for the program’s cheaper, subsidized plan and must pay the full rate, which stretches their household budget and covers just basic medical care, not all the therapy Landon, now 9, requires.

“It only covered eight therapy sessions, and they were done,” his mother said. “He’s gone a year without the services he needs.”

A Florida law that was to start Jan. 1 would give them better coverage at a much lower rate, but the state has delayed implementing it while it fights a federal rule that prevents states from kicking children off the health insurance plans, if their parents miss a payment.

Florida could expand KidCare to cover an estimated 42,000 more children if it complies with that federal rule, but it said earlier this month it would put off any action until President-elect Donald Trump takes office as his administration might not insist on that provision.

The rule prohibits the state from dropping children’s coverage during a 12-month period even if their parents miss a premium payment. Florida is the only state to challenge it.

In the meantime, it is kicking off an average 5,500 children a month from KidCare because of missed payments, according to state records.

“Florida kicked more than half a million kids off Medicaid, and now thousands more have no health insurance because of this delay,” said Joan Alker, executive director of the Center of Children and Families at the McCourt School of Public Policy at Georgetown University. “Only Texas canceled more kids than Florida.”

Florida also has one of highest rates of uninsured children in the country, at 7.5% in 2023, according to the Children’s Health Report Card. Florida was ranked 47th out of the 51 states and Washington D.C., the report said.

“Florida isn’t the only state disenrolling children from Medicaid during the unwinding process, but it has the distinction of being the only state violating federal law by kicking families off,” Alker said.

Other Republican-dominated states, including Arizona, adopted the federal rule and quickly expanded their children’s health insurance programs, she said, while Florida is challenging the regulation and removing kids from its rolls.

The Booths — she’s a drug store manager, and he’s an electrician — have never missed their $260 monthly premium, even if it has meant putting off their electric bill, Erin Booth said.

“Kids like my son need their insurance to stay alive,” Booth said.

Anticipating a massive wave of low-income families losing their Medicaid insurance during the unwinding, the state enacted a law two years ago to expand KidCare to include those who earned the equivalent of between $51,640 and $77,460 for a family of three.

Under that law, the Booths — whose income is in that range — could qualify for a subsidized plan that only costs about $20 a month and covers all the special services their son Landon needs.

But the expansion has been delayed while the state challenges the federal rule. Florida sued to block that continuous coverage rule, saying it would mean $13 million in administrative costs. A judge in Tampa threw out the lawsuit, but Florida has continued to throw kids off the insurance plan while it appeals the ruling.

After the Biden administration approved Florida’s expansion plan earlier this month, contingent on complying with the rule, state health officials decided to take a wait-and-see attitude to see what the incoming Trump administration will do. They’ve asked for a 30-day extension of its deadline to expand coverage and have continued to kick off children because of missed premium payments.

The state’s disenrollment levels in the KidCare program were so drastic they caught the attention of Amy Baker, Florida’s chief economic analyst, as she listened to state health officials describe the huge drop-offs during a revenue estimating conference in July.

“You don’t see this kind of drop from our estimates and call it normal,” Baker told Jeff Dykes, the chief financial officer for the state’s children’s health insurance program.

State officials presumed that as the state disenrolled people from Medicaid they would pick up KidCare, she said. But the numbers showed that the number of KidCare recipients has actually declined by the thousands.

Paragon Health Institute President Brian Blase, a conservative policy analyst who was a health advisor to Trump during his first administration, has praised Gov. Ron DeSantis for resisting Medicaid expansion. Blase claimed Medicaid expansion “would have harmful health care effects” and lead to a huge number of Floridians dropping their private insurance to enroll in the federal program.

Naomi Lubrin doesn’t see it that way.

“The state does not value the needs of these kids who cannot speak for themselves,” said Lubrin, a mortician and single mother who was raised in Orlando and recently moved to Plantation.

Lubrin has watched her son Taj regress after being kicked off Medicaid six months ago in May.

They got Medicaid after he was diagnosed with autism at 16 months old, and he received rigorous speech and occupational therapy and had specialists including a nutritionist, she said. He used to see a therapist nearly every day.

“Once that was taken away, they only do thirty minutes,” she said.

The therapists’ helped Taj overcome his aversion to solid foods and move away from eating only pureed food, Lubrin said.

“We started to see some improvement, but when the therapy ended he regressed and stopped eating solids,” she said.

The state recommended she sign up for KidCare but it would have cost $500 a month just for basic medical care, and no therapy sessions. “It costs that much to pay out of pocket for a few therapy sessions a month. KidCare is no benefit at all,” she added.

Taj has has had no health insurance since the state canceled his Medicaid in May. She had to wait for the enrollment period at work to put him on her insurance, starting January 1. Her premium for the two of them will be $800 a month.

“That is why I do the overtime, so I can make ends meet so he can get the therapy he needs,” Lubrin said.

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