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    Lance’s 15 year-old son, who has type 1 diabetes, was terminated from Medicaid. It took Lance more than two months–and untold hours of effort and worry–to fix it.

  • Lance and his wife are devoted to providing the best care possible for their two children. It’s not easy. Meeting the needs of their daughter with a disability and son with type 1 diabetes takes a tremendous amount of energy and effort. Lance does construction work for a small employer which does not offer health insurance. With a family income slightly over the poverty level, Lance and his wife would be eligible for Medicaid if Florida expanded Medicaid, as 40 other states have done. Since Florida hasn’t expanded Medicaid, Lance and his wife are forced to forgo coverage and “try to stay healthy.” But their children absolutely must have health insurance. Fortunately, their daughter is eligible for disability-related Medicaid coverage, and their son has been covered by Medicaid since he was diagnosed with diabetes. Until now.


    When Lance received the notice from DCF saying it was time to renew his Medicaid application, he wasn’t worried because he had been through this several times before. Although his income varies each pay period, it hadn’t gone up overall. So he was shocked when on July 21, 2023, he saw the notice from DCF stating that his son’s Medicaid coverage would end on July 31st – just 10 days away! The notice said “We have reviewed your eligibility for full Medicaid benefits and have determined you are not eligible because your income exceeds the limit for Medicaid.” It wasn’t clear who that language was referring to because it didn’t mention any specific family member. Also, it didn’t say how DCF had calculated the family’s income or what the income limit was for their family size. Another section on the third page of the notice listed Lance, his wife, and son, and said their Medicaid benefits would end on July 31st with the reason: “YOU OR A MEMBER(S) OF YOUR HOUSEHOLD REMAIN ELIGIBLE FOR MEDICAID UNDER A DIFFERENT MEDICAID COVERAGE GROUP.” When Lance called DCF to ask what this notice meant, the representatives would only tell him that he made too much money for his son to stay on Medicaid and that his daughter could not be included in his household size for purposes of determining eligibility because she receives disability-related Medicaid. This didn’t seem right to Lance.

    Lance said, “The notice didn’t explain anything, and worst of all we had just 10 days to find new coverage, which was impossible. I can’t understand why the state would have such little regard for my son’s health. He deserved to be treated better than this.”

  • Lance tried contacting everyone he could think of for assistance, and ended up at Florida Health Justice Project (FHJP). FHJP advised him how to file an appeal, and how to ask DCF to reinstate his son's Medicaid coverage while the appeal is being processed. He did everything he was supposed to, but his son’s coverage was still terminated. It took numerous phone calls to DCF and AHCA over two weeks before his son’s coverage was restored pending the appeal.


    As Lance prepared for the appeal hearing, FHJP helped explain the process. (Note: FHJP has since published this Medicaid Appeals Toolkit to help individuals handle their appeals). He encountered a variety of hurdles in exercising his right to obtain documents from DCF showing why it believed his son was ineligible, including shifting contact names and numbers, incomplete mailing addresses, non-working fax numbers, and a full voicemail boxes. Lance finally received DCF’s records one week before the hearing. In addition to his most recent application and notices he already knew about, the records contained screenshots from DCF’s internal systems with a lot of acronyms he didn’t understand like AMS, ABMG and IQEL. The records did not include an easy-to-understand summary of who DCF was counting in the household, the income it was using, and the income limit for their household size. After he and FHJP carefully analyzed every page of DCF's records, they noticed that Lance had made a simple error on his application regarding his family’s tax filing status. That turned out to be the problem. One wrong click late at night the day before the application was due had caused these many hours of phone calls, waiting on hold, and worrying about how to pay for his son’s insulin without Medicaid coverage.


    As soon as Lance told his DCF contact about his family’s correct tax filing status, his son’s coverage was restored and the upcoming appeal hearing was canceled. All of this would have been avoided if DCF had included in its notice the household members and income upon which it based its decision that his son was not eligible for Medicaid. This is exactly why FHJP and the National Health Law Program have filed a lawsuit asking the court to require DCF to provide notices that contain this information in compliance with the Due Process clause of the United States Constitution.


    According to Lance, “I would never have made it through this process without the help of someone like the Florida Health Justice Project. I wouldn’t have understood the real reason my son was losing Medicaid, how to appeal and keep coverage in place, or how to interpret the records I received from DCF for the appeal. It’s nearly impossible for an ordinary person to figure this stuff out, which doesn’t seem fair.”

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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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