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    Michael W.

    Age: 63

    Seminole, FL


    After struggling with Parkinson's, Michael was finally enrolled in Florida’s Long-Term Care Waiver program in 2022, allowing him to receive needed services at home. But just a year later, his Medicaid was improperly terminated, resulting in the loss of his essential in-home services and thousands of dollars in out-of-pocket expenses for his family.

  • Michael is among the over 700,000 Floridians terminated from Medicaid after the Department of Children and Families (DCF) began redetermining eligibility for enrollees in April 2023, a process referred to as the “Medicaid Unwind.”


    Michael has received Medicaid benefits since 2010, and the devastating impact of Parkinson’s has grown increasingly worse since that time. As a result, he needs increasing amounts of assistance with the simple activities of daily living, like eating and bathing. His aging mother, Liz, is his primary caregiver. After years of caring for Michael alone, she is starting to struggle as his health continues deteriorating.


    During the pandemic, his family applied for Florida’s Long-Term Care (LTC) Waiver. This Medicaid program allows enrollees to receive home and community-based services (HCBS) from a Medicaid managed care plan instead of going to a skilled nursing facility. The application process is arduous and complex, and unlike all other Medicaid programs, including nursing facility care, HCBS programs have enrollment caps and long wait lists. To the family’s immense relief, Michael was finally enrolled in November 2022.


    The in-home services are crucial to Michael’s well-being, and he also depends on Medicaid to cover his weekly blood transfusions for aplastic anemia and medications to treat his anemia and diabetes. Yet, in late July 2023, Michael’s case manager suddenly informed his mother that he would lose Medicaid coverage at the end of the month. Michael’s family was stunned as they never received a termination notice or a notice telling him he needed to renew his eligibility.


    Aware of his father’s reliance on Medicaid coverage and the short timeframe before it was set to terminate, Michael’s son, Vince, immediately started calling DCF. Vince spent over 20 hours attempting to connect with someone who could assist with Michael’s redetermination. He was frequently disconnected and never received responses to the dozens of voicemail messages he left. Consequently, Michael's coverage lapsed on August 1, 2023, causing his managed care plan to stop providing home health aides and in-home physical therapy, which he had recently been approved for.


    Vince urgently continued to pursue avenues to start Michael’s redetermination process. With the online portal not allowing him to reapply for Medicaid, Vince, who lives in Atlanta, traveled to Pinellas County to visit the local DCF office. Finally, a representative was able to help Vince reapply based on Michael’s LTC Waiver eligibility since his disability benefits had been incorrectly canceled. However, the application would take time to process, leaving Michael without coverage for his necessary medications and treatments. As a result, Michael’s family spent nearly $3,000 to pay for his medications, and he was forced to miss several blood transfusion appointments.


    Michael’s Medicaid had been improperly terminated without the written notice and an ex parte review required under Medicaid law. These same violations, which were occurring before the 2023 Unwind, should not be re-occurring now pursuant to a successful class action, Harrell v. Poppell. In 2019, Florida Health Justice Project’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.


    Fortunately, Vince’s wife, a social worker, was referred to FHJP after sharing her family’s story with colleagues at a national conference. Katy contacted DCF regarding Michael’s improper termination in violation of the Settlement agreement, and he was promptly reinstated.


    Michael and his family are incredibly grateful for FHJP's assistance after “swinging and missing for three weeks'' on their own. Medicaid coverage proved even more vital as Michael was hospitalized for kidney failure shortly after his reinstatement. But on top of ensuring that Michael got transferred to an appropriate skilled rehabilitation facility, his family has had to deal with the confusing and laborious process of seeking reimbursement for their earlier out-of-pocket expenses. Moreover, they needed to restart the approval process with Michael’s managed care plan to obtain his home and community-based services for when he eventually returned home.

    There’s so many requirements, restrictions, and hoops you need to jump through just to be put on Medicaid and get these programs approved, but then it’s the easiest thing to be taken off of it. And then it’s super difficult to get back on,” says Vince.

  • Michael’s situation was easily avoidable had DCF conducted the ex parte review required under the Settlement and its current policy. Instead, even with his family tirelessly advocating for him, Michael lost coverage and access to the services and treatments he desperately needed.



    *Stock Photo

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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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