With Florida lawmakers as the target audience, a Collier County mom has gathered about 800 Florida families over the past 15 weeks to create the group "We the People" to advocate for
family members with developmental disabilities.
Since 2011 more than 20,000 people have been on the waitlist for Florida’s Developmental Disabilities Individual Budgeting Waiver, better known as the med waiver, funded by federal and state matching dollars.
The waiver covers most medical needs, live-in care and out-of-home care for those with specific developmental disabilities, including autism spectrum disorder, spina bifida and down syndrome.
“Before you're 21 in the state of Florida, you're entitled to services like speech therapy, occupational therapy, and nursing because they’re made to happen through the schools,” Nordin said. “But after you graduate, there is no long-term care for people with these disabilities unless you become eligible for this waiver. And it’s expensive, so unless you’re a Rockefeller, you need the waiver.”
The high waitlist numbers are a product of continuously low funding. Florida ranks 49th out of 50 states for per-capita spending on services for people with disabilities, and that low spending has a trickle-down effect. The state is unable to adequately pay existing care providers, who then leave the industry, leaving more Floridians without services.
Those on the waitlist for the waiver have their needs evaluated. Priority is given to those found to be in crisis.
Amanda Hayes of Palatka applied for crisis services for her son Jayden in March. But her application made no progress. Becoming a part of Nordin’s group in August motivated her to share her story with legislators in her area. It all resulted in her son being approved to receive the waiver.
“Becoming a part of the group really propelled me to talk to my state legislator again, even though I had already talked to him before. His district aide started helping me find resources,” Hayes said. “I found out a couple of weeks ago that Jayden was finally approved for the med waiver. I don’t know if it was [state legislator’s district aide’s] emails she sent to whoever she sent them to, or the video of me speaking at a delegation meeting, but it all helped.”
Hayes added that the We the People group is not just for family advocacy, but also serves as a support network for Florida families who share a common challenge.
“It lets you know you’re not alone. When I started this whole process, I had no idea what to do, where to go, where to ask, and now I have so many people I could reach out to,” Hayes said. “I talked to another mom locally, and I told her my story. She went, ‘Oh my God, thank you for telling me, I feel like I’ve been going crazy!’”
Eliminating the waitlist is a major goal for Florida advocates, as it currently has 23,000 people on it. The Arc of Florida, a disability rights nonprofit group, found $287 million in unspent budgeted funds for disability services, which could have attracted an additional $496 million in federal matching dollars. The average cost of services per person is about $33,000 per year.
Ven Sequenzia, former president of Autism Society of Florida, was outraged when he heard about the nearly $800 million that went untouched. His daughter Amy, now 40, was on the original waiting list for the waiver in the 1990s. Sequenzia believes the unspent money would be a game changer.
“The money that they did not spend could have eliminated, could have fully eliminated, the waiting list this year, and there probably would have been $50 million left over,” he said. “23,000 people could have been served.”
Sequenzia said he feels that not much progress has been made in the past three decades. Since a large number of people with developmental disabilities can’t vote or work, there aren’t many substantial incentives for legislators to serve those populations. He also cites ableism as part of what’s fueling the lack of support.
“Until their attitude changes and they believe that individuals with developmental disabilities and intellectual disabilities actually matter as human beings, it’s never going to change,” Sequenzia said. “Florida wants to spend $400 million to serve a few hundred students at New College, but when you’ve got 23,000 people with disabilities on a waiting list, they won’t fund it.”
A main principle of We the People is making sure local legislators know the problems of people who have developmental disabilities. Members are encouraged to share their personal stories. Nordin believes this will spread the group’s message effectively and accurately, as it’s never been done in Florida.
In her own outreach efforts, she’s made representatives aware of her situation with her twin sons, Logan and Gavin, who are both 14 and have severe disabilities. Logan fell out of a window in 2022, and barely survived.
“We haven’t personalized the issues. Families who have kids like mine are overwhelmed,” Nordin said. “Getting in the know and being civically engaged is the only reason I’ve learned anything, even pre-accident. I just started paying attention and realized that in Florida, we don’t ever talk about our disabled community. I and the families want that and need that to start happening, so we’re doing it ourselves using our experiences.”
Some who've been involved in advocating for those with disabilities believe We the People's
mission is a vital step in getting more services.
Tom Nurse of Clearwater said he has an adult daughter, Shelby, with cerebral palsy. Shelby's husband David also has the condition. They both receive services from Florida’s Agency for Persons with Disabilities while living under the same roof.
“Shelby and David are well funded, appropriately funded, because of a lot of damn good advocacy work,” Nurse said. “Stephanie and the group bring a lot of urgency. They have really embraced the person-centered philosophies behind special needs advocacy, meaning it’s not about the person without the person, giving them the opportunities to remain in their homes and live in their communities.”
This story was produced by the Democracy Watch program, a collaboration between FGCU Journalism and WGCU News.
The reporter can be reached at ebrodriguez3478@eagle.fgcu.edu