“I spoke with both Medicaid and Social Security and there wasn’t any sort of notes. They were both stumped as to why he was canceled,” she said via text.

Harmatz said that some clients who appealed before their termination date still haven’t had all their coverage restored. She’s also heard about several severely disabled adults whose coverage was terminated on Easter Sunday without notice, leaving them without home health services that they depend on for their daily health and safety.

Seeking assurances

The Florida Health Justice Project has asked the state to ensure there’s no gap in coverage for people who never received notice they were up for redetermination or for medically complex kids. They are also pushing the state to post Florida’s plan for these kids on its website so advocates have somewhere to refer parents.

Right now, FHJP is referring families to the personal email of a KidCare staff member who said they could send parents directly to her for assistance. FHJP has also created a Q&A for parents of kids with complex medical conditions.

“We’re a small nonprofit. We’re struggling to keep up with responding to the people who email us, and we can’t deal with these cases one by one,” Harmatz said. “There needs to be a sustainable system fix.”

Hernandez is at a loss about what to do next for his son.

The family now makes too much for traditional Medicaid. Llarell is still eligible for Florida’s medically needy “share of cost” program, which will allow him to receive Medicaid coverage each month after his medical bills exceed a certain amount based on income, $7,000 a month in this case. But many providers are unable or unwilling to provide care without guaranteed reimbursement.

“I told them that’s impossible because the only way that I can get $7,000 in invoices is if the nurses show up, and they won’t show up because they don’t have proof of payment,” Hernandez said.

Without nurses, Hernandez would have to quit two of his three jobs and work from home full-time to care for Llarell.

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