‘It’s been devastating’: Teen with complex medical needs one of more than 500,000 children in Florida dropped from Medicaid
BY HEATHER WALKER, DANIEL COHEN
JULY 25, 2024
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(WSVN) – More than a half million of Florida’s most vulnerable children have lost their Medicaid coverage in the past year, and for one Coral Springs teen, the stakes are literally life or death.
Fourteen-year-old Maryanne cannot speak. But she smiles when her mom Sandra sings her favorite song.
Sandra Sulzbach, mother: “She’s an angel from God, so we love her.”
Maryanne was just two days old when she was diagnosed with a rare blood vessel abnormality in her brain.
Complications from surgery led to a stroke and brain damage, which left her bedridden.
She now relies on a ventilator to survive.
Sandra Sulzbach: “She depends on that. If not, she will die. Many doctors say, ‘You can just let her go ’cause that’s not life for her, being on the ventilator is not life.’”
Jeffrey Sulzbach, father: “A child of God, it’s not our decision to let her go.”
Given her complex medical needs, Maryanne has had Medicaid coverage all her life. That is, until May 1 when she suddenly lost it.
Jeffrey Sulzbach: “It’s been devastating, because first we weren’t informed that they were going to cut it. So right away, when we needed her medication for her seizure control, it’s like, ‘Well, we can’t give you nothing because they’re not paying for it anymore.’”
Sandra says she was told she and her husband, who live in this rented Coral Springs apartment, made too much money for Maryanne to remain eligible for Medicaid.
Sandra Sulzbach: “My point of view is like, they want you to live in poverty in order for them to get Medicaid. It’s like if they want us to live homeless.”
Lynn Hearn: “They are absolutely in crisis.”
Lynn Hearn, with the Florida Health Justice Project, advocates for families trying to navigate a complicated system.
Lynn Hearn: “Florida does not have a broad array of options for coverage for children with complex medical conditions, unless their parents income is just very, very low.”
In Florida, more than 531,000 children lost Medicaid coverage between April 2023 and April 2024. That includes more than 69,000 in Miami-Dade and more than 53,000 in Broward.
Lynn Hearn: “Seeing large numbers of children with complex medical conditions losing Medicaid all at once is fairly jarring.”
The reason so many kids have recently been dropped from Medicaid goes back to the pandemic, when people lost their jobs and health insurance.
Enrollment in Medicaid skyrocketed, and federal protections prevented states from taking away the benefit.
But once the COVID emergency ended, states started reviewing who remains eligible.
Jennifer Malqui, mother: “I literally lost so many nights of sleep.”
Jennifer Malqui’s daughter, Bianca, had cochlear implant surgery on both ears due to severe hearing loss.
Jennifer Malqui: “That’s a magnet, so that processes the sound, so that’s how she’s able to hear.”
Medicaid pays for the 16-year-old’s therapy sessions three times a week.
But like so many others, in April, Jennifer learned Bianca was being dropped from Medicaid.
Jennifer Malqui: “I was worried. I was very scared.”
The state said Jennifer also made too much money.
But she says what they used was outdated income information.
Jennifer Malqui: “I am a single mom of two. I work my butt off, and I live in Miami, so the cost of living is extremely high.”
That’s when this legal assistant got to work.
Jennifer Malqui: “I had federal rules on one side, state laws, statutes, public laws SSA Act.”
Jennifer appealed and is waiting on a final decision.
Bianca Malqui: “I’m really proud of my mom because she’s doing a lot of stuff, like, working hard as my mother. I love her.”
Meanwhile, Maryanne’s parents have struggled with the high cost of caring for her without Medicaid.
Jeffrey Sulzbach: “I’ve been using my 401K to help out with buying a lot of Maryanne’s needs. But it’s kind of like depleted now.”
Then finally, some good news.
The Florida Health Justice Project stepped in to help, and Maryanne’s critical coverage was recently reinstated.
Experts stress families have the right to appeal the decision to drop children from Medicaid.
FOR MORE INFORMATION:
Florida Health Justice Project
floridahealthjustice.org/ending-continuous-medicaid-coverage.html