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    Tatwayna and Marie*

    Orange County, FL


    Tatwayna’s child, who needs round-the-clock nursing care, was suddenly and incorrectly cut off Medicaid. Tatwayna spent countless hours unsuccessfully trying to get DCF to fix the error. 

  • Tatwayna is the kind of mom who reminds people that there are angels and heroes among us. She’s a single mom who takes care of her 13 year-old daughter, Marie,* a child with complex health needs. Marie requires round-the-clock nursing care due to central congenital hypoventilation syndrome - a condition requiring ventilator, trache, oxygen, and suction machine. In spite of her overwhelming physical challenges, Marie attends school daily (a special school with a registered nurse on hand), and she maintains a 3.8 GPA. And in spite of her overwhelming life challenges, Tatwayna works full time, goes to church and impresses everyone she meets with her intelligence, work ethic and gentle perseverance. The only public assistance she relies on is Medicaid for her severely disabled daughter.


    As a child with complex medical needs, Marie's Medicaid renewal date was supposedly postponed until the end of the “unwind“ in March 2024. But, like many unsuspecting low-income Florida parents struggling to make ends meet, Tatwayna made the “mistake “ of applying for food assistance before her daughter's Medicaid redetermination date. This application triggered an early review of her daughter’s Medicaid eligibility. And like many Floridians, DCF erroneously found Marie was no longer eligible for Medicaid and terminated her coverage. And, again, like many Floridians, Tatwayna did not receive the notice informing her that Marie’s Medicaid would be terminated at the end of October 2023. She had always received Medicaid notices by mail and had no reasons to suspect that her daughter was no longer eligible for Medicaid.


    But on November 1, Marie’s Medicaid managed care organization informed Tatwayna that the nurses would no longer be coming to care for Marie because Medicaid had ended. Tatwayna then looked in her ACCESS portal and found an incomprehensible12 page notice. Again, like many Floridians, the termination notice did not provide the information needed in order to identify the error that had been made, i.e. different income deeming rules apply for children who have been found disabled by SSA than for those enrolled in regular family-related Medicaid.


    Suddenly, Marie was without Medicaid for the first time in her young life. She ended up in the ER with an infection. Tatwayna tried for hours to get her child back on insurance.

    “After days and days, spending hours on the phone, I finally got through to a DCF supervisor who kept insisting Marie was not eligible for Medicaid. I took more time off from work and went to DCF and they said she’s over income even though I was explaining that Marie is disabled and has always been on Medicaid. I even called the head of AHCA but

    kept getting the runaround!”

  • The health insurance organization then suggested she contact the Florida Health Justice Project (FHJP) for assistance.


    FHJP filed an urgent appeal requesting reinstatement. The appeal was filed after the termination date, and thus reinstatement pending appeal was not required. However, DCF, to its credit, exercised the state’s option to reinstate Marie’s Medicaid pending her appeal. (see Q&A explaining appeal reinstatement rights and options pending hearing).


    FHJP explained to DCF attorneys that the state had failed to apply the correct income budgeting for disabled children; DCF agreed it had made an error; and the hearing request was withdrawn.


    While Tatwayna is profoundly grateful that her daughter is back on Medicaid, she has some warnings for other parents of severely ill children. “DO NOT do anything that could trigger an early review of your child’s eligibility”, she cautioned. “Your child can end up in the hospital after critical daily care suddenly stops. The notice was impossible for me to understand, and even DCF staff could not see the error until after FHJP got involved.”   


    *Marie is a pseudonym.

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  • 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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