Delays in services for people with developmental disabilities troubles state lawmakers
TAMPA, Fla. - Florida has a crisis in caring for children with developmental disabilities.
Thousands are not receiving the home services they signed up for through a Medicaid waiver program due to a waitlist that requires many to wait for years.
Dig deeper:
It includes Kelly and Wes Olive in St. Petersburg.
Their son Bennett, 10, was born with a rare gene disorder that delayed his development.
PICTURED: Bennett Olive.
What they're saying:
"He ranges from two to five on an intellectual scale, depending on what it is," said Kelly. "We have to blend all his food for him and feed him, diaper him, all the things you would do like a newborn mom. I still have to do with my 10-year-old."
READ: Controversial gun bill moves through Florida legislature following deadly FSU shooting
Bennett had six surgeries and lives with a shunt that runs from his brain and spine to his stomach to keep him alive.
"It could fail at any time. So, anyone that's around him has to kind of know the signs of a shunt failure," Kelly said.
He has also had intense seizures, with some lasting hours.
PICTURED: Bennett Olive.
"We're in the trauma room fighting for his life. He was on about a three-hour seizure, and he just still wasn't breathing, still wasn't coming out of it," she said.
Bennett pulled through that scare and continues to make his parents proud. He requires a lot of attention, which is why Kelly gave up her job to care for him.
Big picture view:
They have Medicaid, which makes them eligible for a range of home-based services for children with developmental disabilities under a program called the iBudget Waiver.
However, they cannot receive it because Bennett is stuck on a waitlist with more than 21,000 others.
"And right now we've been on the waitlist for seven years with no idea when we could possibly get off," Kelly noted.
PICTURED: Bennett Olive.
State managers have tied the issue to a lack of funds (excluding the billions of dollars our state government has stashed in reserves and the hundreds of millions intended to reduce the backlog that Florida’s Agency for Persons with Disabilities received but did not spend).
"They talk about what a vulnerable population it is, what a sacred population it is, and then hold on to the money," said Alison Holmes, a mother of an adult son who waited 18 years to receive home support through the program.
That's just part of the problem that causes families to suffer. The state will remove you from the waitlist if it determines there is a crisis, but families in situations they consider a crisis are often denied or wait months for a response before being approved.
"You have to be in like a dire, unsafe situation, and even then, you still might not get off the waitlist," Kelly noted.
For example, Yasmina Halim's daughter Lily has severe developmental disabilities and is terminally ill. She said she was denied three times and eventually received approval for home-based services, after she could not find an institution that would accept and care for her daughter.
PREVIOUS: Waiting for help: More than 21K of Floridians with developmental disabilities stuck in backlog
Denie Sydney got her daughter Mattison out of the backlog due to the crisis, but she overworked herself caring for Mattison until she had a breakdown.
PICTURED: Denie Sydney with her daughter Mattison.
Meanwhile, the Olive family is attempting to get off the waitlist by applying for crisis consideration. They couldn't afford their mortgage payments, went into forbearance and are trying to avoid foreclosure.
"Therein comes the crisis. If we don't keep our house, we might be homeless," said Kelly.
The other side:
Some lawmakers have tried to help with varying degrees of success.
They required the state to approve or deny a crisis claim within 15 days, but families sat it's still taking months to get an answer either way.
They also required the state to create an online application to expedite the process.
CLICK HERE:>>> Follow FOX 13 on YouTube
However, it does not offer an option to claim a crisis, sending families like the Olives right back to pen and paper forms.
The legislature also created a program for parents on Medicaid to undergo training and be hired as caregivers for their children.
That could be a lifeline for the Olive family, but for them and many others, it comes with a catch.
The program would pay them just enough to disqualify them from Medicaid.
"It's like a catch-22," said Kelly. "You're going to go through all the training, you're going to get one paycheck, and then you don't have Medicaid anymore. It doesn't even make sense."
What's next:
Lawmakers are aware of these issues and are currently working on reforms.
The Source: FOX 13 Chief Political Investigator Craig Patrick collected the information in this story.
WATCH FOX 13 NEWS:
STAY CONNECTED WITH FOX 13 TAMPA:
- Download the FOX Local app for your smart TV
- Download FOX Local mobile app: Apple | Android
- Download the FOX 13 News app for breaking news alerts, latest headlines
- Download the SkyTower Radar app
- Sign up for FOX 13’s daily newsletter