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    Penelope Chapter 2

    Age: 5

    Palm Beach County, FL


    After a sudden termination, a mother successfully fought to have her medically complex five year old reinstated on Medicaid. Months later, Penelope’s Medicaid has again been cut off without notice, and her mother is struggling to get her covered before the out-of-pocket expenses pile up.

  • Gillian thought that her daughter Penelope would stay on Medicaid until March 2024. That’s what she remembers being told by DCF when Penelope, who suffers from complex medical conditions, had her Medicaid reinstated after being terminated at the beginning of the Medicaid “unwind.” Gillian knew that her family was over income for Medicaid and was grateful that DCF decided to abide by their Redetermination plan of scheduling medically complex children for redeterminations at the end of the unwind, in March 2024.


    In early February she was preparing to check in with DCF and KidCare in order to ensure that her daughter would have a seamless transfer between their insurance programs… Instead, she learned that her daughter had been terminated from Medicaid at the end of January.


    “This is crazy–Medicaid dropped my daughter again. No notice. No envelope with a yellow stripe. Her occupational therapist notified me at the beginning of February that Penelope was no longer on Medicaid. When I called DCF they hung up on me. They give the automated statement, we are ‘experiencing high call volumes,’ and say to ‘look out for the yellow labeled letter’ and then call. But I never got any letters.” 

  • Gillian tried to see if there were any notices or other explanation of what happened on her ACCESS account. “That was a nightmare of wasted time and frustration. The new system was impossible for me to access. I had an existing account so I tried to log in, rather than register to create a new account. Those are the only 2 options. But it was impossible. No one had told me that I had to create a new account on ACCESS in December. Finally I got through to a ‘technical assistant.’ They knew nothing about the Medicaid or supposed transfer of Penelope’s insurance coverage to KidCare.”


    She could see her notices, including an incomprehensible notice dated January 9, 2024 which stated that Gillian was enrolled in Medically Needy with a $4,763 share of cost and that Medicaid would end for Penelope (as well as her parents who did not even know they were on Medicaid) on January 31, 2024. The reason given was “AN INDIVIDUAL IS IN THE SAME CASE BUT A DIFFERENT CATEGORY.” This made no sense. The notice also had boilerplate language that DCF would “automatically share your information with Florida KidCare and they will send you a letter about how to sign up.” That did not happen.


    Gillian appealed to DCF and got another incomprehensible notice dated February 6, 2024. It said “your” Medicaid was [temporarily] reinstated due to the appeal. It is unclear if this alleged reinstatement is for Penelope, or her parents, or all 3 of them. And a subsequent review of her ACCESS account indicates that no one in the family is currently on Medicaid.


    Gilllian applied to Kid Care in February and asked for expedited enrollment. She is hoping and praying that it will not take the usual 4-6 weeks to process and that Penelope can enroll in a Plan on March 1st and not face another month with no insurance. No parent wants to have their child uninsured–even for a month–especially parents whose kids have complex conditions. Penelope has already gotten sick with strep throat while she was uninsured–resulting in a $200 bill.


    Gillian is not sure how her family will manage the KidCare full pay premium of $259/mo for those over 215% of poverty, or roughly $67,000/year for a family of 4. With an income of about $75,000, her family is over this modest limit.


    Like other Florida parents, especially those whose children have medically complex conditions that cannot be adequately managed with a low-cost marketplace plan, Gillian is grateful that the 2023 Florida Legislature expanded the eligibility for subsidies to include families with incomes over the current limit. However, like others, she’s concerned that the expansion, scheduled to start January 1, 2024, is delayed and that the premiums proposed by Florida are still unaffordable for Florida families with very sick kids who are struggling to make ends meet. For example, Florida is proposing 6 tiers of premiums, and the top 3–for families with incomes between 225% and 300% of poverty–range from $95 -$195/month. “This is still too high for families like ours,” Gillian said. “When Penelope had a sore throat last week, we had to pay out of pocket. It is so scary not to have insurance. Fortunately she did not need to go to the hospital and her pediatrician could treat it. But the bill was still $200. That kind of money is not in our budget for one month, much less every month.”

  • Read STORIES Of Other Floridians

    Relying On Medicaid





    Former Foster

    Care Children

    Seniors and People With Disabilities

  • We are grateful to the National Health Law Program (NHeLP) for their support of the

    "Medicaid | The Lived Experience" STORIES Project.

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