TALLAHASSEE, Fla. — Florida officials responsible for providing services to people with lifelong disabilities have allowed nearly $800 million in state and federal matching funds to fall through the cracks in the past two years, according to a budget analysis by a statewide advocacy group.

That’s enough to give the 23,000 people on a waiting list maintained by the Agency for Persons with Disabilities the critical services they need to live with their disorders, which include autism and cerebral palsy, the advocates say. The money could be used for medical treatment, therapy, housing and to help people maintain a level of independence and stay out of institutions.

The 34,000 people who do receive those services — a number that hasn’t changed much in two decades — face cuts each year to the services that help them live fuller lives.

“They always blame it on a lack of funding, then fire the director,” said Ven Sequenzia, who served as president of the Autism Society of Florida for 18 years and has a 40-year-old adult daughter with autism, epilepsy and cerebral palsy. “It’s frustrating. It’s the same crap every year.”

Discovering that the money has been in the state’s budget all along outraged him.

“When I saw the numbers and they said they don’t have money to fund the list, I lost it,” said Sequenzia, who lives in Sanford. “Sorry if I’m not being politically correct, but this is criminal. In two years they blew this. If they used all the money available to them, the waiting list would be gone.”

Digging into state budget records, The Arc of Florida, a statewide nonprofit that advocates for services for people with disabilities, discovered $287 million in budgeted money for disability services that went unspent.

That money could have drawn an additional $496 million in federal matching dollars, The Arc said. The cash is sitting in a state bank account, accumulating interest.

In a statement issued after the story was published online, APD communications director Melanie Mowry Etters said the agency returned to state coffers $145 million that wasn’t spent on services for people with disabilities as the Legislature intended.

And once that money was put into a reserve account, it could no longer be used for ongoing benefits, she said. She didn’t address why the money wasn’t used to help clients.

Jim DeBeaugrine, a former head of The Arc of Florida who now does consulting work for the organization, said the $287 million is an accumulated surplus over several years.

“It is a lot of money that could do a lot of good for families,” DeBeaugrine said. “Advocates have the right to say they deserve their fair share of that. It should be just as high a priority as anything else.”

He also said those nonrecurring funds could be used for one-time services such as respite for the caregiver.

Pattern of underfunding

From the time his daughter was on the original waiting list in 1999, Sequenzia has seen a pattern of underfunding followed by a half-hearted attempt to fix the problem.

When at 22 she aged out of the school district’s services in 2004, he tried to sign her up for APD’s program for disabilities, but state officials mistakenly closed her file.

“We had to fight to get her back on it,” Sequenzia said. It took six months to get her back on the list and she finally was enrolled and began receiving services in 2005.

The waiting list has plagued the state for decades, and advocates blame it on a shortsighted lack of making services for the people with disabilities a priority.

U.S. District Judge Wilkie Ferguson ruled in 1996 that the state was unconstitutionally blocking children with disabilities from getting critical services. Many people had been on the list for seven years, Ferguson noted, which still holds true.

In 1999, Ferguson found the state in contempt and fined it up to $10,000 a day for deliberately withholding services. The state reacted by dramatically increasing funding, ultimately doubling the APD’s budget to $1.1 billion but the APD still had problems whittling down the waiting list.

“The big issue was the same as is happening now,” Sequenzia said. “Obviously they couldn’t directly add 14,000 people into the pipeline because the Legislature didn’t provide the money.”

Not only that, but the state has cut back on what it pays providers, forcing them to reduce services.

A recent survey showed 38% of providers have reduced services because they couldn’t recruit new staff, while 28% are considering future cuts. McDonald’s pays more than many service providers, Sequenzia said.

The average hourly wage for service providers was $9.50 an hour in 2021. The Legislature passed a bill in 2021 to provide $58 million for salary increases for caregivers and other service providers, but it was vetoed by Gov. Ron DeSantis.

Waiting since age 16

Having those services available over the last seven years when she was raising her twin daughters, who have cerebral palsy, would have improved their quality of life immeasurably, said Angela Williams of Seminole County.

Her daughters have been on the waiting list since they were 16. They are now 23.

“When I initially applied … I was seeking assistance with basic medical supplies for the twins: briefs, gloves, tub rails, linings for their beds and personal care assistants,” Williams said.

Williams said she missed job opportunities because she had no one else to retrieve the girls when they got off their school bus. And she relied on church members to help pay for their medical supplies.

After aging out of school at 22, there were no affordable programs where they could attend during the day, Williams said.

“The girls spent their days watching Disney and coloring, drawing. That is no quality of life for two viable young ladies,” she said.

Fortunately, she found a day program that gave the twins a scholarship to offset the costs, but she still has a huge out-of-pocket expense.

“I have done everything imaginable to ensure my daughters have a viable life and not having access to the benefits from APD has been a hindrance,” Williams said. “I want other families who are just beginning this journey with their special needs child to have an easier time.”

© 2023 Orlando Sentinel
Distributed by Tribune Content Agency, LLC

Read more stories like this one. Sign up for Disability Scoop's free email newsletter to get the latest developmental disability news sent straight to your inbox.