Lawmakers respond to wait list for disabled Floridians
TAMPA - State leaders put citizens with developmental disabilities on a waiting list for home care, and thousands have been waiting for years, including JJ Holmes.
He cannot use his voice, but with the aid of a voice synthesizer he spoke up for intellectually and developmentally disabled citizens in the halls of power. And in 2024, he got state lawmakers’ attention as he explained how many who qualify for home-based support through the state have not been able to get it. JJ Holmes ought to know. He’s been waiting for more than 17 years.
This goes back to a long-running problem. The state offers home-based care as a cheaper alternative to putting people with developmental disabilities in institutions. A lot of eligible families sign up for it so their loved ones can remain at home, and the state puts them on hold.
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"You’ll see parents leaving their jobs to stay home with a 30-year-old child, a 20-year-old child, so they’ll do whatever they can," said The Arc of Florida CEO Alan Abramowitz.
The longer many go without services like nursing, therapy, training, respite care, transportation, equipment and home modifications, the more costly their needs can become, and the more costly the needs of their over-extended and exhausted parents can become.
"You cannot control a psychotic break," said Denie Sidney whose health broke down while caring for her disabled daughter and ailing husband. "I think of all the money you could have saved because they had to pay for my inpatient stay, the aftercare from inpatient stay, the medication."
"It’s not like we’re asking for a mansion," said JJ Holmes. "We’re just asking for people to be able to live comfortably in their homes. I don’t think it’s too much to ask."
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A state analysis shows more than 21,500 disabled people in Florida are waiting for help. The average wait time is more than 8.5 years, and that nearly 40 percent have been waiting for more than 10 years.
"Could we fix it today if we really wanted to? Yes, we could. Could we find the money? Yes, we could," said Democratic State Representative Kelly Skidmore who represents Palm Beach. She said previous administrations tried various approaches that did not work, and that a lack of funds perpetuates the backlog.
For background, Gov. Jeb Bush inherited a wait list in 1999. Bush more than tripled funding for home and community-based services and got rid of the backlog.
"In elevating their lives, I actually found it elevated the lives of all Floridians," Bush said in 2013.
Bush erased the wait list under legal pressure. Developmentally disabled residents and their families had sued, and the surge in state funding helped settle the suit.
"In the original bringing of the settlement of the class action lawsuit, people’s needs were met," said Clearwater resident Tom Nurse.
When his daughter Shelby got help, he said it kept him from going broke and it changed her life.
"My daughter can’t crawl, walk, stand up, roll over, get a drink of water, dress herself, eat without assistance. Yet, she has a Masters in mental health counseling. She’s now working with others with disabilities in the field seeking employment," said Nurse.
However, Florida’s full commitment to individuals with intellectual and developmental disabilities didn’t last. The wait list was re-formed before Bush left office, then it grew under governors Crist and Scott as the Great Recession cratered state revenue. And when the economy bounced back, state leaders did not reduce the wait list as they accrued a substantial state surplus.
It would now be around $1.1 billion in recurring revenue to get everyone off the wait list.
In making his pitch to state legislators, JJ Holmes said the recent toll road discounts would have covered nearly half of that money for a year.
"They gave a half billion dollars to toll road drivers. And it would have transformed my life and the lives of nearly 23,000 people just like me," he said.
JJ and his family took several trips across the state to meet with legislative delegations, and his efforts helped fire up a movement that is finally driving some change.
"This young man and many others like him deserve to be like your kids and my kids, and we’re going to do whatever the heck we have to do to make it happen," said State Sen. Jason Pizzo, (D) Broward/Miami-Dade.
It wasn’t just JJ. Stephanie Nordin, mom of an autistic son and many others organized online, then rallied in Tallahassee. They discovered some lawmakers may not have understood the situation, and others may have just needed a nudge.
"It was not me who put this bill on the agenda. It was JJ. Because without his effort and without Stephanie and her family effort explaining it to us and pushing us, we may not be here," said Florida Senate President Kathleen Passidomo, (R) Collier/Lee/Hendry.
JJ took the floor as the Senate unanimously passed a bill to increase funding, move clients with caregivers over 60 up the wait list, and finally get some off the list. The House also passed this bill in the closing week of the session.
Advocates say it’s a promising start for what could be much more to come.
"With the help of the Nordin family with the help of JJ and Allison Holmes family, this is an opportunity for us, and thank you Madame President for the Herculean lift," said State Sen Jason Brodeur, (R) Seminole/ Orange.
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