Health Advice



After losing Medicaid, parents of Florida's sickest kids are in limbo

Caroline Catherman, Orlando Sentinel on

Published in Health & Fitness

ORLANDO, Fla. -- Osceola resident Oscar Hernandez is scrambling to ensure his 16-year-old terminally ill son, Llarell, will continue to receive medical care.

Llarell is paralyzed and relies on three life support machines and specialized nursing care for 16 hours per day. Hernandez thought his son would receive Medicaid coverage for the rest of his life, until late March, when he got a call from his son’s Medicaid plan telling him his coverage would soon be terminated.

“It’s been 16 years of taking care of a kid with a terminal disease. By the grace of God, he’s still with us. But we shouldn’t be dealing with situations like this. It is just wrong,” Hernandez said.

His son’s coverage was set to end March 31, Easter Sunday, but the state extended it to the end of April. He’s spent over a dozen hours on the phone trying to understand what he can do next.

“I don’t know what to do. I don’t know which way to go. I call Medicaid, and they have no answers for me,” Hernandez said. “I haven’t received any letters or anything. … So I don’t know what’s happening. I really have no clue.”

1.3 million dropped


Over the last year, Florida has dropped over 1.3 million people, including 460,000 children, from its state Medicaid program after the end of a pandemic-era policy that banned states from removing participants who became ineligible. In March, the state began redetermining eligibility for kids with chronic complex conditions, like Llarell. Reviews for these children were delayed until now.

The state says cases where the family didn’t find out about termination until it was already happening are an anomaly. Yet advocates point out that during the past month, when the state’s sickest kids had eligibility reviews, some Florida families found out their kids lost coverage with just days of notice and struggled to get answers from the state about what to next.

“It’s very troubling. It seems like there are a lot of very sick children who are now left out in the cold,” said Joan Alker, executive director of Georgetown University Center for Children and Families.

The Florida Department of Children and Families informed families throughout the eligibility review process through letters, emails, texts and calls, said spokeswoman Mallory McManus. She said the department called recipients two months before their redeterminations, successfully speaking with 93% of those affected.


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