Erin Booth opened her mailbox and saw the letter from the Florida Department of Children & Families Services.
She knew what it was. Booth had been waiting for this letter for about a year: a Medicaid redetermination letter for her cancer-surviving and recovering 8-year-old son.
“If you do not upload the required documents to DCF your child's Medicaid benefits will expire,” it said.
She did so, and a couple of weeks later, Booth learned Landon was not eligible. She and her husband, Darren, made too much, pulling in about $70,000 between the two of them.
“They denied me and didn't give me any options. This paper doesn't give me any options,” Booth said, waving the letter around.
Booth and her husband also lost Medicaid, but it’s her son, Landon, who she fears for. Landon is one year cancer-free, but his recovery treatments have been expensive as he deals with metabolic bone disease and brain damage from chemotherapy.
Now Landon, like many other Florida kids, is in a gap without coverage.
“I'm thankful for Medicaid,” Booth said. “The Medicaid has helped us, but I'm at the point where we're still at the crossroads of trying to heal, and how can we heal if we don't have coverage?”
Florida’s messy redetermination process, especially for kids
During the COVID-19 public health emergency, Medicaid eligibility expanded and states were not allowed to drop people who no longer qualified under the continuous enrollment provision. In Florida, the number of individuals and families seeking Medicaid assistance rose from 3.8 million to 5.4 million between March 2020 and November 2022.
Early estimates for disenrollment predicted that between 900,000 and 1.75 million residents would no longer be eligible. It was also predicted that kids would make up a large bulk of those terminated from coverage.
It’s been one year since Florida began sending letters of Medicaid redetermination. About 979,000 people have been disenrolled, and as predicted, the impact has been felt much more by children.
Since the start of disenrollment last year, nearly 460,000 kids have lost Medicaid coverage. Only about 49,000 have successfully migrated to Florida KidCare, the state’s Children's Health Insurance Program, also known as CHIP.
It is unclear what has happened to the vast majority of children.
What’s concerning experts is the amount of procedural disenrollments, Medicaid terminations that occur when DCF does not hear back from recipients. This can occur for many reasons, including a changed address or if the recipient is unable to get through to Medicaid on its phone line. Ultimately, it means there are families losing Medicaid who may still qualify and are being terminated from coverage, said Erica Monet Li, a policy analyst with the Florida Policy Institute.
“Unfortunately, we're seeing that families with special health care needs and medically complex conditions are still struggling to navigate the system of care,” Li said. “Children losing Medicaid are having a hard time moving to CHIP. And many of those kids should probably be covered by Medicaid to begin with. So that means that those kids are at high risk of becoming uninsured for a period of time.”
According to the Kaiser Family Foundation, about 58% of Florida’s recipients were terminated for procedural reasons.
WMFE asked DCF about the amount of children who lost coverage and what options their families have. It did not answer any of WMFE’s questions, but did state:
“The Medicaid redetermination process is simply setting a normal process back in place to ensure those accessing a safety net program in our state are those who truly qualify. Many Floridians’ circumstances have improved since the pause of redeterminations and with a thriving economy and low unemployment rate, it should be expected that families in a stronger financial situation would no longer be eligible.”
It also described its communication systems as “robust,” stating that its dedicated line for Medicaid redeterminations had “wait times of less than 3 minutes,” but the federal Centers for Medicare & Medicaid Services reported Florida to have an average call time of 42 minutes. Only New Mexico was reported with a worse wait time of 43 minutes.
Additionally, UnidosUS, a Latino civil rights group, reported eight in 10 callers were automatically disconnected from the DCF phone system between April and December.
No CHIP expansion
Before the end of 2023, President Joe Biden signed a law that required all state Medicaid and CHIP programs to extend 12 months of continuous coverage to eligible children, effective Jan. 1 – even if families were unable to make their CHIP premium (in Florida this would be Florida KidCare). However, Florida filed a lawsuit against CMS in February to prevent the agency from enforcing the continuous eligibility.
“Charging for premiums is what offsets the cost of administrative costs of administering the program. So, they're arguing that if they comply with these rules, it would cost about $12 million per year to cover those who should have been disenrolled,” Li said.
“Families who paid CHIP premiums in January are entitled to continuous enrollment, but it's unclear if they're being disenrolled for nonpayment of premiums at this time.”
A ruling has yet to be made on that case, which was filed in February in a federal court in Tampa.
“Families who paid CHIP premiums in January are entitled to continuous enrollment, but it's unclear if they're being disenrolled for nonpayment of premiums at this time,” Li said.
Florida did attempt to expand Florida KidCare before the start of the year, which would lower monthly premiums, but that was delayed after Florida failed to include a summary of public comment, which is a federal requirement.
“Florida continues to cut corners in their applications and continues to fail in terms of being transparent with data. And the concerns of those who want to see the KidCare expansion done,” Li said.
The target date for the expansion was April, but the lack of paperwork has pushed the date down the road for an indefinite amount of time.
‘The state failed me’
For 8-year-old leukemia survivor Landon it has been a yearlong state of confusion and uncertainty when it comes to Medicaid coverage.
In March 2023, his mother received the troubling letter informing her that Landon's Medicaid case was going to be redetermined. It kicked off that year of uncertainty.
And it was confusing. she was told before DCF's letter that children with complex medical issues, such as cancer, would be redetermined toward the end of the process in 2024.
Landon was in the middle of chemotherapy when Booth received notice.
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 reporter, Booth got confirmation that Landon would instead be redetermined in 2024, and the original letter was an error.
Booth was successful in retaining Landon’s Medicaid coverage, but it was only delaying the inevitable.
Landon beat his cancer last year while Medicaid redetermination was going on, but chemo left him with metabolic bone disease, brain damage, and a long expensive road to recovery.
This month, his mother received another letter. In a moment of déjà vu, she read that Landon was ineligible for Medicaid at the end of the month. The letter gave her no options. But Booth copes with stress by researching. She knew Florida KidCare was an option, but the $260 monthly premium concerned her.
Medicaid was a necessity for Booth and her husband. The couple bought their house about a month before Landon was diagnosed with leukemia. Since then, the couple has worked tirelessly to pay for their home and maintain their son’s treatments such as physical therapy, occupational therapy and speech therapy. Landon goes to those appointments weekly but also checks in with a neurologist and oncologist each month.
“I know that sounds like a lot, but when you're paying $260 a month for coverage, and then you have $5 co-pays that’s easily $300 at least a month,” Booth said.
The Booths face another concern with Florida KidCare – the uncertainty of what it covers for children with complex medical needs.
According to the letter Booth received, KidCare will cover: “physical occupational, respiratory and speech therapies limited to 24 treatment sessions within a 60-day period per episode or injury.”
“I don't know what episode or injury is,” Booth said. “So you're saying if his brain injury is more than 60 days overall you're not gonna get anything? I don't know how that's gonna work out.”
Lastly, Landon’s Medicaid ends Mar. 31. And it appears Florida KidCare will not begin coverage until May. This means Landon has no coverage for April. She’s not sure how they’ll be covering any of Landon’s costs for the upcoming month.
“I just feel like the state has failed me because I had to work well through my son’s whole cancer treatment. All I wanted was Medicaid so my son could have his treatment covered, and I wouldn't have to worry about going bankrupt,” said Booth, a pharmacy tech.
Booth is exploring legal options with the Florida Health Justice Project to see if her son’s complex condition lends further Medicaid coverage.
“I feel like (Florida) is failing kids,” Booth said. “I don't care about me being covered. I just care about my son being covered. Because he's the one who has to live his life through this. You pay your taxes, you do all this and they fail you.”
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