About a quarter million Florida children were deemed ineligible for Medicaid with the state about halfway through its redetermination process, in which the Department of Children & Families is reevaluating eligibility for 5.5 million residents.
So far, DCF has disenrolled around 260,000 children. The state plan was to have those qualifying children enter Florida’s kid health care plan, but only 25,000 have enrolled.
The state doesn't have information on what's happened to the others.
RELATED: Biden administration slow to act as millions are booted off Medicaid, advocates say
During the COVID-19 public health emergency, states were not allowed to drop people who no longer qualified for Medicaid under the continuous enrollment provision. That order ended in May, meaning states could begin narrowing its list of Medicaid recipients, such as 8-year-old Landon Booth.
Redetermination during chemo
In March, Landon's mother, Erin Booth, received a letter informing her that Landon's Medicaid case was going to be redetermined.
That was confusing. Booth was told beforehand that children with complex medical issues would be redetermined toward the end of the process.
Landon was in the middle of chemotherapy when Booth received notice.
"Why was he chosen first? In the (Medicaid) handbook it says children under 21 with complex medical conditions to be redetermined last, which would be in March of next year," Booth said.
Landon was diagnosed with leukemia two years ago.
Booth began calling DCF for answers but couldn’t get in touch with anyone and had her call dropped multiple times.
After about two weeks and with help from a local television reporter, Booth got confirmation that Landon would instead be redetermined in 2024, and the letter was an error.
Landon's treatments are complete, and he's even had his chemo port removed, but the treatments have left him with several complex medical issues, including osteoporosis.
"He's gone to the bone clinic. We see a urologist. We see a lot of specialists, and he has gone through therapies like [occupational, physical] and speech," Booth said. "Soon he'll probably be going through a psychologist for [post-traumatic stress disorder]."
Trying to connect with DCF
Many families are struggling to reach DCF while redetermination is going on.
At a recent appropriations committee on health and human services, DCF Deputy Secretary Casey Penn told Florida legislators that DCF was experiencing five-minute wait times on a specially designated hotline.
"We are not specifically sure of any dedicated Medicaid redetermination phone line that has a five-minute wait time at this moment," said Erica Monet Li, a health policy analyst at the Florida Policy Institute. "We keep hearing, 'I'm on hold with DCF for hours at a time. My call is dropped.' And, 'I don't have time to get back and get back to help.' "
WMFE reached out to DCF about the hotline but has not confirmed that this number exists.
On the bottom of DCF's Medicaid redetermination page are three hotline numbers. All of them are emergency numbers for "abuse," "domestic violence" and "disaster distress." A number for "redetermination help" is not listed.
State data shows that in July over 2 million calls were received by DCF, and 42% were abandoned. The average wait time was 41 minutes before being pushed to another helpline.
Florida ranks 45th of all states for call center wait times and abandonment rates. The top states had two-minute average wait times
Monet Li is also concerned about Florida’s large procedural termination rate – or Medicaid terminations that occur when DCF does not hear back from recipients. As of September, 51% of Floridians were disenrolled for procedural reasons. The state does not keep track of reasons for a procedural termination.
Many of the disenrolled are children and still qualify for Medicaid due to wider income margins, said Joan Alker, co-founder of the Georgetown Center for Children and Families, which tracks the national Medicaid unwinding process.
"Federal researchers projected that three out of four children who would lose Medicaid would remain eligible," she said.
Alker said income margins were increased, allowing more children to keep care. While some disenrolled families will move to options offered by their employers, Alker says that’s often cost-prohibitive for low-income families.
"A few of them may be going to the [federal] marketplace, but that's not a big place for children to get coverage in general," Alker said. "But overall, I certainly worry that a good chunk of them is uninsured."
Another option would be Florida's Children's Health Insurance Program, or CHIP, but the program is run by another agency, making transitioning difficult. Additionally, parents would be expected to pay a premium for coverage.
Alker is worried about the many children who can't get on CHIP, and what the price of a medical bill might be without coverage.
"These kinds of gaps in coverage are problematic for children because they're not expensive to cover, but they are regular utilizers of care, as any parent knows," she said.
The cost without coverage
Back at Erin Booth’s home, she's concerned about next year and whether Landon will lose Medicaid due to her and her husband’s income being slightly over the limit. CHIP isn't a possibility due to its premiums.
To make the matter more complicated, Booth recently learned Landon's neurological issues are due to a brain abnormality formed from treatment, she said.
Booth is willing to do whatever it takes for her son, but she knows she and her husband can't do it alone. With Medicaid, the Booths were able to cover Landon's treatments that without insurance would have cost at least $2 million, she said.
Between the mistaken redetermination letter and the ticking clock on the 2024 redetermination process, she feels the state has turned its back on her son.
"I'm just asking for my sick child to have health care that is reasonable, where I can afford it. And I'm not going to have to declare bankruptcy or lose my house because I can't afford my mortgage," Booth said.
DCF has the option to pause its redetermination process, reevaluate and even use $3.3 million allocated in the state budget to improve call centers and staff performance, Monet Li said, but has not yet moved to do so.
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