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    Theresa and Sally

    Lee County, FL


    Theresa frantically ought answers after being told that her mother’s Medicaid,which helps pay for her nursing home care, had ended. Theresa could not get any answers from DCF, and she spent countless hours trying to confirm the problem had been fixed.

  • Theresa, the daughter and sole caregiver of her 91-year-old mother, Sally, is always on top of her mother’s Medicaid benefits and nursing home care. Among other things, this included making sure she timely responded to DCF’s renewal requests to ensure ongoing eligibility for Florida’s Medicaid long-term care program, as well as communicating with her mother’s Medicaid managed care plan and the nursing facility. Thus, imagine Theresa’s shock when her mother’s nursing home called to tell her that her Medicaid plan was canceled as of September 30th. This was a total shock. “I didn’t get a notice at all!”


    Then, on October 2nd, Theresa received a letter from AHCA informing her that her mother’s managed care plan had been changed. Again, this was a total shock as she had not requested any changes, and her mother had been in the same plan and nursing facility for over a year. On October 20th, the plan sent Theresa a letter saying her mother had been disenrolled. No reason was given.


    Desperate for answers and concerned that her mother might be evicted from the nursing home or charged for services that Medicaid should cover, Theresa called the plan. The plan representative said that DCF had instructed the plan to “end her [mothers] coverage” and suggested calling DCF. This “advice” was profoundly unhelpful. Theresa could not get through to the DCF call center for over a month!

    “This is a nightmare; you cannot talk to anyone at DCF. I tried four different numbers. With each number I tried multiple options, but none worked! Even if I managed to reach a person, I would be transferred and ultimately get a recording: ‘all lines are busy, try again later’....click."

  • In early December, Theresa again contacted AHCA to file a formal complaint. They said even though Theresa has guardianship of her mother, she still needed to fill out the authorization form; which she did. They told her the status was pending. But two months had already passed since her plan disenrollment. Theresa was understandably concerned that her mother would be charged for the Medicaid services her mother received in October and November and for which the plan is responsible. She contacted FHJP and we explained how to protect her right to reinstate and retroactive coverage.


    Finally, On December 16th, Theresa received a letter from AHCA confirming that her mother's Medicaid in the Long Term Care Program had been reinstated retroactive to October.


    “I was quite relieved to receive that,” Theresa told FHJP. “But I am still going to call the plan to make sure this document is correct and my mother is covered. This was a nightmare to go through. It’s outrageous that caregivers are panicked and left scrambling for answers with little or no help. Sadly, I can see that dealing with Florida’s state agencies and managed care plans is so difficult that it would make people afraid to be their parents’ guardian or POA”.


  • Read STORIES Of Other Floridians

    Relying On Medicaid





    Former Foster

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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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