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    Laurie and Adam

    Jackson County, FL


    Laurie’s son, who has type 1 diabetes, cannot lose health insurance. His Medicaid was not scheduled for redetermination until March 2024. But she got a confusing notice in September 2023 saying her son would lose Medicaid at the end of the month, and she's spent panicked days trying to ensure his ongoing coverage. 

  • When Laurie's fifteen-year-old son came home from summer band camp, she immediately noticed something off. Adam was constantly thirsty, rapidly losing weight, and always going to the bathroom. Because of Florida’s heat wave, she initially thought it was an electrolyte imbalance or dehydration, so she scheduled an appointment to check on her son’s symptoms. When they checked his blood, she was shocked. It turned out that his blood sugar was over 6 times the normal range. Adam was in a state of diabetic ketoacidosis, meaning that he didn’t have enough insulin in his bloodstream to break down sugar in his blood. Adam was vomiting and couldn’t keep down any fluids. He needed emergency medical attention.


    Laurie and Adam, who live in rural Florida, immediately drove an hour and a half over to the hospital. “I remember driving, praying, and thinking, there’s nothing I can do but drive.” She remembered feeling so grateful to have a Medicaid insurance card for her son. After she showed it to the hospital’s intake office, he was admitted. Medical staff provided Adam with an IV of life-saving insulin.


    Adam was diagnosed with Type 1 diabetes. Laurie learned about maintaining his blood sugar levels and what to look out for. Because of Adam’s Medicaid coverage, Laurie was able to focus on supporting her son’s newly diagnosed health condition rather than worrying about where she could go to get treatment or how she was going to pay for services. “The bottom line is though, they’re not going to let you in the door without an insurance card,” she said.. “As wonderful as people are, this is the society we live in.” Medicaid was the key to catching Adam’s diagnosis and getting him access to treatment.


    Laurie is no stranger to navigating Florida Medicaid. “To stay on top of this stuff, it’s almost like you need to have a degree in it.” She knew that the Florida Department of Children and Families was working through redeterminations of eligibility for everyone on Medicaid, and she regularly confirmed through Adam’s online ACCESS account that his Medicaid case was open and there was no renewal date until March 2024.


    However, Laurie, like countless other families whose children rely on Medicaid for healthcare in Florida, also receives SNAP benefits that DCF administers. Though she only receives $71.00 per month in SNAP, when she received notice from DCF to update her income for SNAP, she promptly did so. This was an action she now profoundly regrets. The SNAP renewal also triggered a review of Adam’s Medicaid eligibility. Because Laurie’s income had increased slightly, he is now ineligible. “The little bit of food stamps I got was not worth Adam losing Medicaid, for sure. At this point in the game, it was not worth it.”


    On September 8th, Laurie received a confusing 12-page notice from DCF. Among other things, the notice said Adam’s Medicaid was being terminated on September 30th due to changes of income. Laurie, a single parent, works full-time and earns about $2,666 per month, slightly over the income limit for Medicaid eligibility ($2,268 per month for a household of 2), but WAY under the income limit for Florida Healthy Kids, Florida’s Children Health Insurance Program (CHIP), which is $3533 per month for a household of two. She received another notice dated September 19 that said Medicaid would continue for Laurie but not for Adam and that he would be on Medically Needy.

    Their notices are so confusing, a lot of throwing around words like ‘eligible’ and ‘ineligible.’ They say you’re ‘eligible’ for one kind of Medicaid program, but then say you're ‘ineligible,’ but you qualify under another program. I’m not familiar with all of the Medicaid programs. I’ve gotten letters before that would say ‘ineligible’ because [Adam] qualifies under another program. And then I would

    get another letter that said he falls under a different Medicaid program.

    At first, I thought he’s going to stay covered.”

  • Ideally, there should be seamless coverage transitions between Medicaid and the state's CHIP program. Unfortunately, Laurie and Adam’s experience is anything but “seamless.”

    The notice has boiler plate language that says “If you have children under 18 and your child no longer qualifies for Medicaid, Florida KidCare is a low-cost option to keep your children covered with high-quality health and dental insurance. We will automatically share your information with Florida KidCare (floridakidcare.org) and they will send you a letter about how to sign up.” The notice includes a QR code that leads to the Florida KidCare website, but no further guidance.

    But the notice said nothing specific about when Adam’s case was transferred to Florida Kidcare or what Laurie and/or FHK would do to ensure ongoing coverage. And contrary to the notice’s assertion that KidCare would contact her with a letter about how to sign up, Laurie never heard from FHK. She contacted them in a panic with only 10 days left before Adam ran out of insulin and became uninsured.

    She filed an application with FHK online and tried to pay the premium required for coverage but was initially told through an automated recording that payment of the premium did not guarantee coverage. She has called FHK every day, begging for assurance that Adam would be covered by October 1, 2023. Finally, on September 29, 2023, she was able to create an account, pay the premium and see that his status is “pending.” She has not yet received any notice confirming Adam’s coverage for October.

    Loss of insurance for a month is not a good thing for any child–but for kids like Adam, it can be a matter of life and death.

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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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