Waiting for Help: Florida's wait list for citizens with disabilities

TALLAHASSEE, Fla. - Florida has a crisis in serving people with developmental disabilities. Thousands are waiting for home and community-based services due to a backlog in state government. And while the legislature increased funding to help some of them, most will continue to wait. 

In terms of per-capita spending for the disabled, the Kaiser Family Foundation shows Florida ranks 49th among the 50 states and DC. 

Only Vermont and Georgia spend less. 

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As more than 21,500 Floridians with disabilities wait years for home-based services, state lawmakers found a way to address the wait list by renaming it. They passed a bill to stop calling it a waiting list under state law, replacing the words ‘wait list’ with the word ‘pre-enrollment.’ 

"I don’t know what the rationale was behind that," said former Florida APD leader Jim DeBeaugrine. "The reality is these are people waiting for service, regardless of what you call it."

It frustrates many who have been waiting. JJ Holmes has waited for more than 17 years.  

"It’s so disingenuous. Some families are waiting 20 years. And, they are busy calling it pre-enrollment. It’s not pre-enrollment, it is a wait list," he said. 

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And families on the list (or in ‘pre-enrollment’) have learned it takes a crisis to move up the list, and even then, many still wait.

"My son Logan had an accident at his private school," said Stephanie Nordin, whose son is autistic. "Logan fell out of the second story window… broke his skull in five places. He broke his back in five places."

He thankfully recovered, but after he got out of the hospital, he still couldn’t get the home-based services for a while. While the crisis got him off the wait list (or out of pre-enrollment), they could not find any providers in his area with availability to serve him. 

"Logan waited 385 days to get services into the home. There is a crisis of insufficient providers," said Nordin.  

"What you end up with is a bottleneck and not enough services to provide in the community," said Alan Abramowitz, who leads the advocacy organization The Arc of Florida. 

READ: FOX 13 investigates wait list for developmentally disabled citizens

He said Florida needs to pay higher rates to bring in more providers. 

"The amount providers get from the waiver does not equal the amount of money it costs to provide the services," he said. "They have to make up the difference through fundraising or grants or some other way, but it’s difficult."

State lawmakers address this by increasing rates for providers. They could also replace the existing program in which families select their own services to a managed care system. And that's driving some families to worry. 

"The health insurance private sector is not really set up for long-term care. It’s set up as you’re sick, we’ll get you healthier you’re good to go," said Clearwater resident Tom Nurse, whose daughter got off the wait list years ago. 

Concerned families fear managed care could deny or fail to deliver services to support living at home, based on problems many like JJ Holmes have encountered through Medicaid’s managed care program for health. 

"I have seen them over and over again refuse things. I’m terrified if it switches," JJ said. 

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He fears lapses in the quality of care he’d get at home would affect his ability to remain at home in the future. 

"When my parents die, I will go into an institution for the rest of my life and probably just lie in a bed all day. Every day," he said. 

State lawmakers have not made any decisions on this. They urge families to withhold judgment until they see the results of a new pilot program. 

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