Tennesseans with epilepsy relied on state funding for transportation. Then it got cut

Liza Miggo darts over to greet her favorite customer — a tall older gentleman with a long white beard and mustache — as he picks up his order at Bad Ass Coffee in Hillsboro Village. She’s isn't working this morning in late May but loves chatting with him about old films whenever they meet.

The 22-year-old is vivacious and passionate about film — from the industry to the art of it. She took acting lessons in high school, and then dipped her toes into the world working on music videos around Nashville after high school. When looking for places to live, she knew she wanted to be close to the Belcourt Theater.

Liza Miggo, a 22-year-old Nashvillian who has epilepsy at Bad Ass Coffee in Nashville, Tenn., Thursday, May 23, 2024.
Liza Miggo, a 22-year-old Nashvillian who has epilepsy at Bad Ass Coffee in Nashville, Tenn., Thursday, May 23, 2024.

But Miggo doesn’t live within walking distance of the theater just because she loves it.

She chose the walkable neighborhood because she is living with myoclonic epilepsy, a condition that causes seizures and prevents her from safely driving.

“I was one of the most ambitious people in high school,” Miggo said. “I was like, I’m going to do this — move to the city and everything’s going to be great — I’m gonna be like Carrie Bradshaw or something.”

But because of the diagnosis and the surveillance and transportation needs it entails, her life hasn’t gone exactly as she’d planned. Right now, she works as a barista at Bad Ass Coffee instead of the film sets she dreams of, and works to maintain a social life, despite transportation difficulties. When she needs to stock up on groceries, she occasionally calls her mother, Melissa Lagrandeur, for a ride to get things home.

“I’m kind of stuck — and I hate to say that it’s because of epilepsy, but I know that my life would be so different and amazing if I didn’t have it,” she said. “That’s what sucks. I try not to think about that.”

Melissa Lagrandeur drives her daughter Liza Miggo to her local grocery store to pick up her medication in Nashville, Tenn., Friday, May 24, 2024.
Melissa Lagrandeur drives her daughter Liza Miggo to her local grocery store to pick up her medication in Nashville, Tenn., Friday, May 24, 2024.

She said it’s hard to watch the friends she graduated high school with now graduating college and moving into careers.

“The hardest thing about epilepsy is that it’s an invisible disease,” Lagrandeur said. “People don’t understand when she may have some brain fog or memory loss – and all those things have been because of her medications that keep her seizure free.”

But there was a bright spot. Earlier this year, Lagrandeur connected with the Epilepsy Foundation of Middle Tennessee, and Miggo was able to use the group’s Uber transportation voucher program to help get around town.

“[Epilepsy has] definitely affected my social life as well, being an imposition to people for rides," Miggo said. "I’ve definitely lost a lot of friends, just because people move on, you know?”

So, taking an Uber to meet friends or go to Target — without breaking the bank — offered Miggo a new kind of freedom. She looked into joining the YMCA, and planned to start volunteering at the humane society.

Liza Miggo, a 22-year-old Nashvillian who has Epilepsy at Bad Ass Coffee in Nashville, Tenn., Thursday, May 23, 2024.
Liza Miggo, a 22-year-old Nashvillian who has Epilepsy at Bad Ass Coffee in Nashville, Tenn., Thursday, May 23, 2024.

But then, state funding that supported the Epilepsy Foundation’s budget was cut, and the Nashville office was forced to close its doors.

“It all kind of came to a screeching halt,” Lagrandeur said.

'Other initiatives took priority'

Until about 10 years ago, the Tennessee Department of Health funded a statewide grant to the Epilepsy Foundation of East Tennessee that supported a range of services to support people with epilepsy. But about 10 years ago, lawmakers made the money non-recurring, and it's been that way ever since.

“We were told it was an oversight or an accident, and that we would be able to get it back the following year,” Epilepsy Foundation Executive Director Pam Hughes, told The Tennessean, recounting conversations with the Department of Health.

Nonrecurring funds have been added at various times over the last decade, including in 2017 and 2018. But despite efforts by Hughes, lawmakers have yet to restore any recurring funding.

In 2022 and 2023, after Hughes worked with Sen. Bo Watson, R-Hixson, and Rep. Michele Carringer, R-Knoxville, the legislature approved a $900,000 one-time grant to the Epilepsy Foundation of East Tennessee to be used equally across the three Grand Divisions of the state.

With that funding, the group was able to open offices in Memphis and Nashville, in addition to supporting work at Knoxville and Chattanooga branches. Funds supported public education initiatives — 1 in 26 people will have a seizure in their lifetime — as well as services for thousands of clients statewide, including neurology appointments, diagnostic testing, transportation, seizure medications, support groups, a summer camp for kids with epilepsy, and seizure alert technology.

“We have people who've been able to get out of their homes and participate in life," Hughes said. "We have people that have been able to get a job — and maintain it — because they had transportation to get to and from work."

The foundation has served 9,983 people with epilepsy in Middle and East Tennessee since July 1, 2022.

State funding also powered the program that offered $400 each month in Uber ride vouchers for people — including Miggo — to get to and from work and other engagements reliably and safely.

Hughes met with many lawmakers this year, seeking to continue the funding. But with state revenues flattening, the funding was cut.

“What we were told is that other initiatives took priority,” Hughes said.

Lawmakers passed a state budget that they argued had to be limited due to flattening state revenues. Despite budget constraints, lawmakers approved a massive tax cut and change to the state's franchise tax. The $1.5 billion in refunds and $400 million restructure of the tax were the largest combined new budget item this year.

Lawmakers also opted not to approve a sales tax holiday on groceries and food, as they have in recent years. In 2023, Tennesseans enjoyed a three-month holiday on those items.

Living with the decision

The Epilepsy Foundation of Middle Tennessee had to shut its doors after the state grant funding was not included in the budget, cutting two jobs.

“Since we didn’t get the money, we have basically had to do anything and everything so we could try to keep everything running,” Hughes said, adding that she’ll be working to seek the funds again next year.

Liza Miggo, walks her roommate’s dog, Socks, in Nashville, Tenn., Thursday, May 23, 2024.
Liza Miggo, walks her roommate’s dog, Socks, in Nashville, Tenn., Thursday, May 23, 2024.

Lagrandeur received an email from the foundation in April notifying her that the Uber voucher program was terminated directly due to state funding cuts.

Miggo was devastated.

“It’s been tough becoming somewhat agoraphobic, especially not having the Uber rides,” Miggo said. “Just not being able to get anywhere by myself — I don’t think people understand what a big deal that is to being an adult and having independence … I can’t afford that.”

Vivian Jones covers state government and politics for The Tennessean. Reach her at vjones@tennessean.com

This article originally appeared on Nashville Tennessean: Tennessee cuts grant funding for epilepsy transportation program