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    Volusia County, Florida


    Lives derailed: Improper Medicaid terminations are leaving vulnerable Floridians and their families in danger.

  • Despite not having the closest relationship with her sister while they were growing up, Allison has been taking care of her sister Rhea, since 2006, after she suffered a severe brain injury that also left her blind. She became reliant on others for all aspects of her daily living.


    After Rhea was discharged by several institutional care facilities due to her frequent violent outbursts, Allison was forced to bring her sister to live with her. Allison works full time and depends on Medicaid for caregiver support during most days of the week as well as the only medication that helps calm her sister’s outbursts.


    On April 1, their lives were completely derailed as Rhea lost her Medicaid coverage without proper notice.

    “We are totally lost without Medicaid. I usually travel for work 4 days a week, but without it I have nobody to care for my sister. I haven’t been able to work. On top of that, without her medication, my sister becomes very violent and it’s impossible to care for her. I am at my wit's end, and I don’t know what to do. I need to get back to work.”

  • Rhea’s violent outbursts have left Allison with a broken wrist and several injuries in her face. “I’m unable to work right now so I can care for my sister, but I’m also very concerned for our safety.” Rhea’s last dose of the medication that helps control her violent outbursts was on April 1. If her Medicaid is not reinstated before April 14, Allison is extremely nervous about what might happen, as Rhea must get an injection every 14 days. The cost of the medication is close to four thousand dollars per dosage, prohibitive for nearly anyone.


    Rhea requires 24/7 supervision to survive. Her brain injury left her not only legally blind but with severe incontinence issues that require constant support.


    Allison never got notice from DCF that Rhea’s Medicaid was being terminated. She filed an appeal entitling Rhea to reinstatement of Medicaid pending the outcome of the appeal and is now desperately hoping that the appropriate state agencies will fix the incorrect termination of Rhea’s coverage. Like Allison’s sister, numerous Floridians lost their Medicaid coverage on Mar 31, 2024 without proper notice.


    If you, a family member, or friend is in a similar situation, make sure you check out our guidance regarding next steps here and learn how to contact your elected official here.


    The Florida Health Justice Project is a statewide nonprofit that engages in

    comprehensive advocacy to expand health care access and promote health equity for vulnerable Floridians. 


    *Stock Photo

  • Read STORIES Of Other Floridians

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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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