Florida families of children with developmental disabilities stuck in line for assistance
Despite a state budget that allocates more than $900 million this year to support people with developmental disabilities, tens of thousands of Florida families are still waiting for help.
Among them is the Castro family of Sunrise, who said the long-standing waitlist for services is forcing them to pay thousands out of pocket each month to care for their daughter with a rare genetic condition.
A rare diagnosis, a daily struggle
Fridays are always busy in the Castro home. That's when 5-year-old Madi attends physical therapy and dynamic movement intervention-treatments her parents say are essential but costly.
"She has a chromosome 7 duplication. It's essentially a one-in-a-million. It's very, very rare," said Madi's mother, Francis Castro. "We don't have a lot of information as to what that means. It comes with other things, of course, like being nonverbal, [and having an] intellectual disability."
While therapy has made a huge difference in Madi's development, it's all paid for out of pocket. "Her overall care a month, including everything else that we do, is probably about $3,500," Francis said.
Thousands still waiting for help
The Castros are one of more than 23,000 families in Florida stuck on the waitlist for the state's iBudget Medicaid Waiver program, which provides essential services such as therapy and in-home care for individuals with developmental disabilities.
"Some people with a diagnosis of cerebral palsy or severe autism, other chromosomal or genetic mutations, they have been on the waitlist 7, 12, 15 years with absolutely no other assistance," Francis said. "So essentially, they have to quit their jobs and just take care of them."
Although Florida invested a record $2.2 billion into the Agency for Persons with Disabilities last year, only about $64 million went toward reducing the waitlist-enough to serve just 1.71 percent of those in need, according to the Florida Policy Institute.
"Anyone can become disabled at any point," Francis added. "So I think it's something that everyone should be passionate about because once you need the services, it becomes a lot harder to try to get them, and it really shouldn't be."
Other states, including New York, Vermont, and New Hampshire, have eliminated their waitlists altogether.
"It is really frustrating having to continuously fight," Francis said. "But obviously it's worth it for our kids."
CBS News Miami reached out to the Agency for Persons with Disabilities for comment but has not received a response.
