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    Andrew & JoEllen

    Citrus County, FL


    When a profoundly disabled young man was about to be wrongfully terminated from Medicaid, his stepmother quickly filed a pre-termination appeal. This ensured there would be no interruption in his life sustaining nursing services; but the termination never should have happened.

  • Imagine learning that the stepson you care for and who is completely dependent upon 24/7 nursing services will lose these services in 10 days because his Medicaid is ending. Now, imagine you only found this out because the nursing company told you he would no longer receive services the following month! Imagine not receiving any notice from the relevant state agencies explaining what was about to happen and why, or how to appeal.


    Prior to the sudden death of his father, Andrew received SSI, which includes Medicaid. He is also in Florida’s Medicaid Long Term Care (LTC) Waiver program,which covers his nursing care and other home health services. After his father passed away unexpectedly, Andrew began receiving Social Security survivor’s benefits. Because payments under that program are slightly higher than the SSI benefit, Andrew’s SSI ended. However, Andrew was still eligible for Medicaid even after he lost his SSI benefit. Under Florida Medicaid policy and federal law, his Medicaid should never have been terminated, and it is unclear why this happened during the ongoing “unwind process.”


    Fortunately, Andrew’s stepmother, JoEllen, reached out to Florida Health Justice Project (FHJP), terrified about what was about to happen.

    “I have a medically complex adult child who I am continuing to care for upon the death of his father,” JoEllen wrote to FHJP. He is tracheostomy dependent with total care needs. "He is set to lose his Medicaid on 9/30/23. I do not know where to turn for assistance.”

  • FHJP quickly advised JoEllen on how to file a pre termination appeal, which requires that benefits be continued pending the outcome of the appeal. This is a critical due process protection, particularly for people like Andrew who cannot go a single day without their current Medicaid services. More information on the appeals process can be found here: Appeal Q and A.


    But, again, under Medicaid law, Andrew never should have lost Medicaid. States are required to do an “ex parte” review of someone’s eligibility for Medicaid under any potential Medicaid coverage category after their SSI ends.


    Moreover, Florida’s failure to do so was successfully challenged In 2019, when FHJP’s legal director, Katy DeBriere, and her co-counsel sued the state over the same violations. The state quickly agreed to corrective actions, memorialized in the Harrell Settlement Agreement.


    After JoEllen filed a pre-termination appeal, Katy reached out to a DCF representative to explain the situation and cite to the Harrell case. Within 48 hours Andrew’s Medicaid was reinstated. But the family went through significant distress.


    And, as Katy said, “Andrew’s situation is not unique. How many individuals across Florida are being wrongfully terminated, with no proper notice, and do not know they might be a Harrell class member?”

  • Read STORIES Of Other Floridians

    Relying On Medicaid





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    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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