MERRITT ISLAND, Fla. – Nearly 18 months after Florida passed a law promising income to eligible parents of medically fragile children, those families are still waiting for their first paycheck.
Gov. Ron DeSantis signed the “Home Health Aides for Medically Fragile Children” law in 2023 to provide training and hourly wages for family caregivers of children with significant medical needs. To qualify, the child must be 21 years old or younger and qualified for Medicaid-funded care. However, families say the program has stalled.
Delora Bury, the mother of Emersyn — a child who requires constant medical care — says the delay is taking a toll.
“We’re drowning,” Bury shared. “We need the support that was promised to us.”
News 6 first introduced readers to Delora Bury in January and explained how her daughter, Emersyn, was diagnosed with Lysosomal Storage Disorder, a rare disease that impacts the body’s metabolism, slowing down intellectual and physical development. Bury has assumed full-time care of her daughter, giving up her job and income.
“We thought the law was going to be a huge game changer for us,” Bury told News 6 in her Merritt Island home. “Really, we’re nowhere closer than we would have been nine months ago. We actually maybe have kind of gone backward because there’s things we’ve learned.”
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Bury and other families discovered that if they exceed certain income limits, they risk losing Medicaid benefits altogether, disqualifying them from the very compensation the law promised.
“If you go above your income level for Medicaid, you’re kicked off. That means you’re no longer eligible to be a caregiver,” Bury explained. “It doesn’t make sense.”
News 6 reached out to several lawmakers and the Agency for Health Care Administration (AHCA) to get answers about the Medicaid loophole. Florida Rep. Adam Anderson, R-District 57, who co-sponsored HB 391, provided a written statement to News 6 that reads in part:
We are actively working on amending the language of the bill to ensure that families benefiting from Medicaid will not lose their benefits while participating in this program. We appreciate their patience and understanding as we work to deliver a program that truly benefits our community.
Florida Rep. Adam Anderson, R-District 57
On Oct. 1, 2024, AHCA established a fee schedule to set the family caregiver pay rate at $25 per hour for up to eight hours daily. However, the $25 goes to the healthcare agency handling the payments; it’s unclear how much of that reaches the caregivers.
Florida Rep. Chase Tramont, R-District 30, who sponsored HB 391, told News 6 that he has “made very clear” to AHCA that no lower than $18 per hour should go to the parent.
Bury co-founded a Facebook group, “Paid Parent Caregivers Florida Only,” with nearly 1,000 members, to help families organize and advocate for clarification and fair implementation of the law, but right now they have more questions than answers.
“It’s written wrong,” Bury says, “and we’ve been told that from representatives. They could probably get it fixed, but it wouldn’t be until next year.”
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