FOX 13 investigates wait list for developmentally disabled citizens

TAMPA - In Florida, thousands of intellectually and developmentally disabled residents qualify for community and home-based services but do not receive them. They’ve been on a wait list for years. And advocates say the longer families wait, the more it could compromise their health and cost all of us. 

Parents like Nataisha Clay are struggling to care for their children as they age. 

Nataisha’s daughter, London, was born with steep challenges. She’s paralyzed on her right side and cannot stand. And her brain did not fully develop, leaving her fully dependent on her mom. 

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"She’s a snuggle bunny. Everything is ‘Mom’, ‘Mom’, ‘Mom’. She wants my attention and I want to give it to her," said Nataisha. "It’s my kid. I’m doing everything I can."

Florida gives Nataisha Clay and other parents a choice. They can put disabled loved ones in an institution covered by Medicaid, or they can opt for a waiver for home and community-based services tailored to their needs.

This can accomplish two things. First, each disabled person who can live at home should save state taxpayers. 

"It was the difference between $100,000 a year to less than $60,000 a year," said Alan Abramowitz who leads The Arc of Florida (an advocates for individuals with disabilities). "The cost associated with institutionalization is significantly more than supporting a person with a disability in the community. It’s significantly more."  

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In addition to saving money, the waiver for home-based services gives parents like Nataisha what they desperately want.    

"I choose to keep her with me. I love my child," she said.  

However, like many others, Nataisha and London have been stuck on hold. 

"That’s the first thing they say. It’s a wait list. It’s a wait list," said Nataisha. 

She said after she gave birth to London, she was initially told her daughter wouldn’t get access to services until her teenage years. London is now 13, and Nataisha said she was recently told London would have to continue waiting until after she’s 18. 

According to a state legislative analysis, London is still near the bottom of the list of more than 21,500 names, because others have been waiting longer or the state has determined they have more pressing needs than she does. And if you’re wondering what it can take to finally get off the wait list, Denie Sidney explains how it often takes a crisis.  

Her 13-year-old daughter, Mattison Sidney, is legally blind, hearing impaired, and born with three rare syndromes that affect her brain, heart, and motor skills. She was also stuck near the bottom of the list for nearly seven years. 

"The biggest (need) would have been nursing help when you have a child, that is total care," Denie said. 

She phased out of her job as a social worker to care for Mattison, while her husband Marvin worked as hard as he could to keep them going.   

"He bagged groceries for maybe five months and one of his minimum wage paychecks from bagging groceries was $20 over the traditional Medicaid limit, and they cut us off," she said. 

Marvin’s health rapidly declined due to the onset of dementia. 

He died in 2019. And before he passed away, as Denie exhausted herself caring around the clock for Marvin and Mattison, she broke down. 

"I signed myself into a mental hospital (in-patient)," she said. 

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That led to the kind of crisis that eventually bumped Mattison off the list and got her the home nursing care and equipment she needs. But Denie says you shouldn't have to wait for a crisis to get the kind of help that could have prevented the crisis. 

"It is godawful to only thrive on one to two hours of broken sleep. It breaks you as a person," Denie noted, which brings us back to more than 21,500 of Florida’s most vulnerable citizens at risk of going into institutions – and still waiting for the cheaper services to continue to live at home. The longer they go without, the more it wears down their parents.

Nataisha said she’s previously been on the cusp of eviction and the brink of despair. 

"Tears, crying. Just thinking that if I don’t wake up it's okay," she said. 

"The families suffer and sometimes policymakers don’t see it, because the family members will do anything to keep their child in the community," added Abramowitz.