More than 20,000 Floridians with disabilities left waiting for solutions

Waiting for Help: The search for solutions

FOX 13 Chief Political Investigator Craig Patrick reports.

TAMPA, Fla. - Throughout Florida, people with severe disabilities are suffering without the home-based services they are eligible to receive. Florida's government provides services to around 35,000 residents living at home with developmental disabilities, but more than 20,000 others have been stuck on a wait list for years.

Big picture view:

Florida gives people with severe developmental disabilities a choice: choose an institutional setting and be separated from their loved ones or stay with their families and get them services they need at home. Many choose the home option, which is cheaper and intended to save state taxpayers. However, many who choose this option get caught in a government backlog and spend years waiting for the support.

WAITING FOR HELP: Delays in services for people with developmental disabilities troubles state lawmakers

A Floridian's Perspective:

JJ Holmes requires a wheelchair and uses a voice synthesizer to communicate. For the past year, we've followed JJ and his mother Alison from their home in Seminole County, to the Florida capitol, to legislative meetings in the Tampa Bay area.

When given opportunities to speak in public forums, JJ thanked the state for recently providing home-based services through the iBudget Waiver, but he and Alison stress that there is nothing to celebrate after 18 years of waiting — especially as Florida’s Agency for Persons with Disabilities (which manages the wait list) left $360 million it received from the legislature unspent.

"I mean, it's just it's devastating to know that 18 years that he's wasted, and that money was just sitting there unspent," Alison said.

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JJ Holmes knows how to get lawmakers' attention and push them, and they've said that's exactly what they need. In 2024, after FOX 13 aired JJ's story and followed him through the halls of power, the legislature responded. It passed a bill committing more than $38 million to get JJ and around 300 others off the wait list.

Now, JJ is traveling across the state on behalf of more than 21,000 others still caught in the backlog.

"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," JJ said.

The other side:

This is a complicated issue, and in a part-time, term-limited, revolving-door legislature, new members must always get caught up to speed. Experienced legislators said the same goes for Florida’s Agency for Persons with Disabilities.

MORE: Waiting for help: More than 21K of Floridians with developmental disabilities stuck in backlog

"I mean the turnover is great. I think that has a lot to do with those funds not being expended," said State Rep. Kelly Skidmore, (D) Palm Beach. "You get somebody who comes in, and they’re trying to figure things out. By the time they figure half of it out, they leave and somebody new comes in."

JJ and others said prior legislatures also tried to downplay the backlog.

The backstory:

A couple of years ago, they passed a law to replace the term 'wait list' in statute and records with the term 'pre-enrollment.'

Current legislative leaders still call it a wait list and are plugged into the situation and taking steps to try to clear the backlog. However, JJ and some others fear one of their biggest moves could backfire.

What's next:

In 2025, the state opened a voluntary, pilot program for home-based services in parts of the state. Families can give up their spot on the wait list and get support through a private managed care plan instead of waiting to get it directly from the state. Florida lawmakers have an interest in expanding it to everyone on the wait list.

PREVIOUS: FOX 13 investigates wait list for developmentally disabled citizens

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

She’s referring to their experience with private managed care through Medicaid – for medical benefits. They're not happy with how it tends to JJ when he is sick, so they are concerned about the idea of extending it to his daily living needs.

For the past year, Alison tracked how JJ's medical appointments turned out with Medicaid's managed care system.

"Thirty-four rides didn't show up" Alison said. "Out of 40, the last 40. And then they'd say, we've resolved your complaint, resolved your grievance. We'd get a letter, and the same thing would happen next time."

JJ continues to travel across Florida to discuss this with state lawmakers. They plan to review feedback from participants in the pilot program before passing additional legislation to expand it.

The Source: The information in this story was gathered by FOX 13's Craig Patrick.

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