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Our Daughter with Disabilities Lost Medicaid Without Warning

Lindsay G. became disabled at the age of 13 due to an AVM rupture on her brain. The rupture has resulted in a series of strokes damaging greater and greater areas of her brain over the last 9 years. She requires total nursing care 24 hours a day, 7 days a week. Her parents, Donna and Frank, have dedicated their lives to her care. They have completed every application, submitted every annual assessment, and sacrificed their savings and their health to ensure Lindsay receives the care and resources she needs. Now they find themselves trapped in a nightmare of bureaucracy that is putting their daughter’s care on hold and her health at risk.

When Lindsay turned 21 in August of 2022, Donna and Frank were told she would be moved into the Sunshine Medicaid Long Term Care Waiver (LTC) and enrolled in Medicare. They were assured that nothing would change, and her therapies would continue to be provided.

Plans of care were developed and ignored. When Donna called to inquire, she was told they could only talk to her daughter. She explained that she had submitted all the necessary forms to speak on Lindsay’s behalf, but she was told that there was no record of those permissions in the system.

Lindsay qualifies for nursing care, respiratory therapy, occupational therapy, physical therapy, and speech therapy to assist with swallowing, but only a few of those therapies have occurred on a regular basis. She has gone four years without any speech therapy because Sunshine LTC claims they do not have any therapists. Frustrations mounted when Donna and Frank found out that many of Lindsay’s therapists had not been paid in months by Sunshine Medicaid, but had continued working because of their dedication to Lindsay.

On May 1, 2023, Donna and Frank received an email stating that Lindsay had been “involuntarily dis-enrolled from Medicaid” effective April 30th. The family received no Notification of Redetermination in the mail or by any other means. Donna filed a complaint immediately and Medicaid agreed to re-enroll Lindsay effective June 1st.

The Agency for Health Care Administration (AHCA) explained that there had been a glitch in the system and that Lindsay’s Medicaid was never inactive. However, Sunshine Medicaid now considers Lindsay as “newly enrolled” and will no longer cover her therapies without a letter of denial from Medicare. But it is impossible for Medicare to provide a denial because Medicare does not even cover those long-term therapies. These services, especially respiratory therapy, are absolutely critical for Lindsay's care. Without them, she will have to be hospitalized.

Lindsay has experienced many difficulties in the past nine years and has even spent time in hospice where Donna and Frank prepared for the worst. But she has continued to battle on under her parents’ care and with the help of her therapists and nurses.

Lindsay knows her parents are with her and smiles at their touch. Donna and Frank have always wanted what is best for their daughter and never asked for anything more than she needs. Her abrupt disenrollment from Medicaid has not only been frustrating, it has put Lindsay's health and well-being at risk as her parents fight to recover the services that were wrongfully terminated. Donna and Frank have promised their daughter, “We will never give up on you, we will fight as long as you fight.”


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