After years of uncertainty epilepsy services are set to see their first stable source of funding from the state. The money, providers say, will help hundreds of thousands of Floridians, their families and their caregivers.
“Epilepsy can impact any family, and at any moment, without any warning. And this year, epilepsy impacted my family.”
Representative Jenna Persons-Mulicka is the House sponsor of the budget request. Her stepson has epilepsy. She says it’s been a long road to stabilize his life -- and their family’s.
“How do you prepare school, in case he has a seizure there? And how do you return him back to living as normal of a life as possible?" she asks. "It’s a hard and difficult journey, not only for the person who has epilepsy but also for the family who’s trying to help that person. And it’s scary…”
Epilepsy is a disorder of the brain that causes seizures or periods of unusual behavior, and sometimes loss of awareness. It’s diagnosed when two or more unprovoked seizures have occurred. The state Department of Health estimates that more than 360,000 Floridians have epilepsy.
Political strategist Steve Schale had the disorder as a child, and it’s been his passion for decades to advocate for support and funding for proper care. He serves on the board of Epilepsy Alliance Florida, one of the state’s lead agencies in the Epilepsy Services Program at DOH.
“Epilepsy is a terrifying thing, as anybody who’s ever had a seizure or had family members that does -- one in 27 Americans will have a seizure in their life, so it’s much more common than people think," says Schale. "It can be a terrifying thing to navigate, in finding the right doctor and the right medicines. So we do a lot of peer-to-peer counseling, caseworker with patients…”
This year the governor and both legislative chambers included recurring funding in their budgets that would expand services and stabilize them. It’s a change from how the programs are funded now. Funding for epilepsy services has long been tied to the Seat Belt Infraction Trust Fund. But that trust fund is no longer collecting the kind of revenue it used to. Fifteen years ago says Schale, the fund would collect between $1.2 million and $1.5 million dollars. But last year, that amount fell to about $220,000. And so the epilepsy service providers have been operating with a gap.
“And this year, the Florida Legislature is on the brink of permanently fixing that for us," Schale says. "And so, for organizations like ours that provide services to people with epilepsy, it means that we can now budget in a much more thoughtful way, not necessarily having to go back to the Legislature every single year and beg them for one-time money to fill this gap.”
Karen Basha Egozi is the president and CEO of Epilepsy Alliance Florida, where Schale serves on the board. It’s one of the five lead agencies in the Epilepsy Services Program. The organization provides medical care for those who are uninsured, public education and case management.
“We also have a mental health component, which is extraordinarily important because many people with epilepsy suffer from depression," she says. "There’s a huge stigma associated with it, and many of them can’t drive, so they’re home-bound because transportation is difficult when you can’t drive…”
Egozi says if the budget recommendations come through, organizations like hers won’t have to spend so much time struggling for funding.
“And this will mean that patients can continue their services, we’ll be able to expand our services," she says. "Hopefully, we’ll be able to serve more people.”
One of the reasons for this year’s success, Schale says, is having lawmakers with personal experience of epilepsy who can humanize it for their colleagues. Jenna Persons-Mulicka does it in the House. Senator Ileana Garcia, who like Schale had the disorder as a child, sponsored the measure in the Senate.
“But over that time, we’ve not often had people in the Legislature who had seizures. So, for me, it’s been a way I can kind of testify on my own personal experience and provide a voice for those people who don’t have the access that I’m blessed to have in this process to tell the story. Fortunately, year after year, we’ve found legislators who understand what we’re doing, whether we find sisters or brothers or cousins and kind of cobble those together. But this win, this year, is a really big deal for us going forward.”
Which brings us back to Charlie, Persons-Mulicka’s son:
“It’s scary and every case is so unique," she says. "And every person is so unique. So, finding that right path for our Charlie has been and will continue to be a journey. But we’ve overcome some huge obstacles -- and he’s back to living his greatest life, and every day in Charlie’s life is a great life.”
The funding is included in the legislature’s budget for the upcoming fiscal year.
