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    Age: 21

    Lee County, FL


    Dylan, who suffered a stroke at birth which left him totally and permanently disabled, has relied on Medicaid for his entire life. His Mom has managed to raise him at home, but she just got a notice that his Medicaid was ending.

  • Life should not be so hard for Jan* and her 21 year old son, Dylan*. And if Florida expanded Medicaid, like 40 other states, the nightmare described below would not be happening to this hard working single parent and her totally and permanently disabled son, Dylan.


    Dylan has Cerebral Palsy, Intractable Epilepsy, Factor V Leiden Deficiency, Asthma, Cortical Visual Impairment (together with multiple other vision impairments), Cognitive Impairment, and other impairments/significant medical needs. Although he is over 18, a court declared that he needed a legal guardian to care for him and make decisions for him due to his conditions. Dylan has been on Medicaid his entire life, including after he and his mom moved to Florida in 2016.


    Dylan had also been on Supplemental Security Income (a disability benefit which includes Medicaid ) but it was terminated when his parents got a second car. His parents are now divorced. His mom has one car. She can only work part time so she can help take care of Dylan, and the family income is less than the federal poverty level. After moving to Florida, efforts to reinstate Dylan’s SSI have been stalled;; and the wait time for an appeal is over 16 months.


    Since moving to Florida, Dylan has been on Medicaid under the state’s coverage category for children in low income families. And thanks to the pandemic related continuous Medicaid coverage requirement, he stayed on Medicaid even after turning 21 last July.


    Now, with the end of the pandemic-related continuous Medicaid coverage requirement, Dylan is at grave risk. He is someone for whom health care coverage CANNOT end–even for a day. Among his many ongoing treatments and services, he depends on daily anticonvulsant medications. Without those medications, his seizures would not be controlled and he could sustain life threatening injuries. But on April 8, Jan received a notice stating that Dylan’s Medicaid would be ending on April 30, 2023.


    This came as a total shock. She had recently completed a phone interview with DCF for food assistance. While on the phone she asked when Dylan’s next Medicaid redetermination would be and was told July 2023. (This was consistent with DCF’s Medicaid Redetermination Plan, which said that the first cohort of people who would be going through redetermination and then terminated from Medicaid would be those who are both ineligible for Medicaid AND who have not used medical services in the last 12 months. See Plan at 11.)


    But four days after that phone call, a DCF notice was generated stating that Dylan’s Medicaid would be ending at the end of April. Jan was in disbelief; “Nowhere did it explain to me why his Medicaid was being terminated.” The only reason given for the termination made no sense: ” YOUR MEDICAID FOR THIS PERIOD IS ENDING.” This is not a legal reason for termination.


    “From that date I called DCF every other business day and everyone gives me a new story,” Jan shared. “I have submitted all the forms DCF requires and also a letter from his Neurologist stating his medical diagnoses and how he cannot lose Medicaid due to his life depending on his daily anticonvulsant medications.”


    On Friday April 21st Jan took a personal day off work to go to the local DCF office only to be told there was nothing they could do.

    I stood in front of her crying in a hallway. The only "help" she offered me was to call the United Way to see if they had any referrals they could give me and to call Family Health Centers which is a local low income medical facility which allows patients to pay on a sliding scale. Not any of the times I made a phone call or when I visited the DCF office did anyone state that I have the right to appeal the decision. "


    DCF’s notice of termination does not explain where or how to file an appeal. Jan learned about the critical right to appeal after searching online and finding this Q & A. She filed an appeal on Dylan’s behalf on April 28th. Under Medicaid law, because the appeal was filed before April 30, when the DCF notice had said Medicaid would end, Dylan has a right to continue receiving Medicaid at least through the outcome of his appeal.


    To be clear: the nightmare at the DCF office is not the fault of DCF staff. They are public servants who are working incredibly hard with limited resources and problematic state policies. Instead, the nightmare faced by Floridians like Dylan who are losing Medicaid and who are in the “coverage gap” [below the poverty level and thus not eligible for a subsidized Affordable Care Act marketplace plan] is because Florida's leaders have chosen not to expand Medicaid. If Florida expanded Medicaid, like 40 other states, Dylan would be eligible for ongoing health insurance. Everyone needs health insurance, and some, like Dylan, need it as a matter of life and death.


    Postscript: FHJP represented Dylan in appealing his Medicaid termination. As noted above, his SSI application had been denied and his appeal to the Social Security Administration would take months. But under Medicaid law, DCF should have made an independent determination of disability before terminating his Medicaid. Because FHJP appealed before his termination took effect, Florida continued his Medicaid pending the appeal. It took significant time and effort, but with the information and advocacy provided on Dylan’s behalf, DCF evaluated Dylan’s disability and determined he was eligible for continuous Medicaid due to being disabled. “Now my full attention can be to giving my son the best life as he deserves and not worrying if I will be able to provide the life saving medications he needs every day,” said his mother Jan.


    * Jan is a pseudonym of a Florida resident who wanted to share her story and her son Dylan’s story. Dylan is also a pseudonym.

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  • We are grateful to the National Health Law Program (NHeLP) for their support of the

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