Unspent millions, forgotten children: Inside Florida's disability care crisis

TAMPA, Fla. - A Fox 13 investigation reveals how the state leaves thousands of severely disabled children waiting for help while nearly $900 million in designated funding sits unused.

Yasmina Halim's daughter Lily used to love dressing up like a princess. She'd show off her ABCs and dance around the house, her mother's pride and joy.

That was before Tay-Sachs disease, a rare and fatal condition, stole it all away. Now 12, Lily can't walk, talk, eat, or drink. She wears a vibrating vest to keep fluid from drowning her lungs. Doctors say she has maybe three years left.

When Yasmina quit her job to care for Lily full-time and applied for home health services the state provides to families like hers, Florida placed the terminally ill child on a waitlist.

"It's like my child doesn't matter," Yasmina says. "She's just a number."

The average wait? Eight and a half years.

A 20-Year Crisis Reaches Breaking Point

Lily isn't alone. More than 21,000 Floridians with severe developmental disabilities are stuck on the state's waitlist for home-based care—some for more than a decade. A Fox 13 investigation drawing on public records, financial audits, legislative testimony, and interviews with dozens of affected families reveals a system facing significant challenges.

A key finding: While families go without services they legally qualify for, Florida's Agency for Persons with Disabilities (APD) has left hundreds of millions of dollars earmarked for their care unspent.

Over the past four years, APD returned more money to the legislature than it received for reducing the waitlist—roughly $8 million more. Currently, the agency sits on approximately $360 million in unspent state funds. Had APD used that money as intended, it would have triggered more than $520 million in federal matching funds.

The total: More than $881 million that could be helping some of Florida's most vulnerable citizens right now.

When Crisis Becomes the Requirement

Nataisha Clay knows what waiting means. Her daughter, London, was born paralyzed, her brain underdeveloped. She's been on the waitlist since birth. A year ago, Nataisha was straining to carry London around their home, begging for help.

Shortly after we interviewed her, Nataisha had a stroke. She's recovering.

Ten-year-old Bennett Olive has a rare gene disorder, six surgeries behind him, and a shunt running from his brain to his stomach, keeping him alive. He has intense seizures—some lasting hours, turning his face blue as paramedics rush in with breathing bags.

His mother, Kelly, quit her job to care for him. His father, Wes, saw his business take a hit after Hurricane Helene. They went into mortgage forbearance.

Kelly applied for "crisis" status—the one way families can jump the waitlist. The crisis, she explained, would be losing their home and being on the streets with Bennett. Only then would he qualify for home-based services—but without a home to receive them in.

"That's how they've programmed it, yes," she said.

Lawmakers required APD to approve or deny crisis applications within 15 days. Families report it still takes months. The legislature mandated an online application to speed things up. However, the online form doesn't include an option for crisis claims—sending families back to pen and paper.

When Stephanie Nordin's son fell from a second-story window, breaking his skull and spine in five places, the state did approve crisis status. But it took 385 days to actually deliver the home health services.

The Money's There. Why Isn't It Being Spent?

This isn't a story about scarcity. Florida has been flush with cash for years—first under Governor Rick Scott, then under Governor Ron DeSantis, who's repeatedly bragged about budget surpluses.

"We've got a big budget surplus. I don't need the money," DeSantis said at one point. "I don't know what to do with the surplus. It's so big."

Yet APD claims it can't spend down its reserves because current enrollees might have growing needs and the agency doesn't want to overextend itself.

James DeBeaugrine, a former APD leader, says the state already projects what current enrollees will need and commits recurring funds for them in the base budget.

"That should already be in their base budget," DeBeaugrine said.

The legislature has tried to help. After we aired one of our first reports  with J.J. Holmes—who waited 18 years for services—lawmakers committed $38 million to get him and about 300 others off the waitlist.

State Senate President Kathleen Passidomo credited J.J. directly: "This is not me who put this bill on the agenda. It was J.J."

But 300 out of 21,000 is barely a dent.

Programs That Create New Challenges

Lawmakers created a program allowing parents on Medicaid to get trained and paid as caregivers for their disabled children. For families like the Olives, it could provide financial relief—except the program pays just enough to disqualify them from Medicaid.

"You're going through all the training, you're going to get one paycheck, and then you don't have Medicaid anymore," Kelly Olive says. "It doesn't even make sense."

Denie Sidney experienced similar circumstances. She quit her job to care for her daughter Mattison, who's blind, hearing impaired, and born with conditions affecting her brain and heart. Her husband Marvin bagged groceries to keep them afloat. One of his minimum-wage paychecks came in $20 over the Medicaid limit—and they lost coverage.

Then Marvin died.

Medicaid was reinstated, but Mattison remained on the waitlist. Denie worked herself into the ground caring for her daughter alone until she had a breakdown and checked into a mental hospital.

Only then, after her husband's death and her own mental collapse, did the state approve crisis status and provide the nursing care that could have prevented it all.

"Think of how much money you would have saved," Denie says, "because they had to pay for my inpatient stay, the aftercare, all the medication I take."

The Cost Comparison and Institutionalization

Home-based care is supposed to save taxpayers money. It costs less than $60,000 a year compared to more than $100,000 for institutional care, according to Alan Abramowitz of The Arc of Florida.

Yet the system pushes families toward the more expensive option.

After three years of waiting, Yasmina decided to institutionalize Lily so she could return to work and pay the bills.

"I just could never imagine that I'd have to put my child in an institution just so I could get a job," she says. "I could never imagine how I could sleep at night without my child next to me."

However, because of the provider shortage and the complexity of Lily's disease, no institution would accept her. The state then granted crisis status and approved home-based care—the less expensive option.

While Yasmina ultimately received services, the case illustrated the obstacles families encounter when seeking care through the existing system.

What's next:

J.J. Holmes—the young man Fox 13 followed and documented for more than a year—continues traveling across Florida, speaking at legislative meetings and demanding answers. At one session, lawmakers cut his microphone when he started quoting Governor DeSantis's comments about budget surpluses.

"If I was a teacher, and the state legislature was my student, I'd have to sit down with their parents and have a conversation about repeating a year," J.J. told us. "I'd give them a zero."

His mother, Alison, tracked his medical transportation through Medicaid's managed care system: Out of 40 scheduled rides, 34 didn't show up.

That matters because the state is now pushing to expand managed care to home-based disability services, moving families from direct state support to private insurance plans. J.J. and many others fear it will make things worse.

"It looks great that you've got all these benefits, but when you actually try and use them, you just hit a brick wall," Alison says.

Legislative turnover doesn't help. In the past five years, APD has had five different secretaries. Representative Kelly Skidmore says the constant churn means funds don't get spent: "By the time they figure half of it out, they leave and somebody new comes in."

A couple of years ago, legislators tried to soften the optics by replacing the word "waitlist" in official records with "pre-enrollment." Even APD officials can't keep it straight.

"The waitlist continues to hover around—or I'm sorry, the pre-enrollment list continues to hover around 22,000," one official testified.

"It's not pre-enrollment," J.J. says. "It is a waitlist."

Questions for State Leadership

We asked J.J. what he'd say if he could speak directly to Governor DeSantis.

"Why do you go around the state bragging about how much money you have in the surplus while there's a massive waitlist?" he said. "Would you have your kids on managed care if they had complex medical needs, where 34 out of 40 rides don't show up? Please let me ask you some of these questions and more. I'm sure Craig Patrick would love to cover our conversation."

We sent J.J.'s questions to the governor's office. We haven't received a response.

Following Fox 13's investigations, state lawmakers held hearings, redirected funding, and approved emergency measures that helped hundreds of individuals receive services. Thousands remain on the waitlist.

EDITOR'S NOTE: This investigation began in 2005 when Craig Patrick first started covering Florida's home-based care backlog. Through four governors and countless legislative sessions, the waitlist has grown. Fox 13 will continue reporting on this issue as long as families continue to wait.

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