Bill to protect students with epilepsy
Legislation that was championed by 2 teens awaits Northam’s approval
Jamie Van Cleave spent her junior year adjusting to remote learning, battling seizures and advocating for legislation that will make schools safer for students with epilepsy. She hopes her senior year will bring the chance to earn her driver’s license.
Jamie, along with 13-year-old Brie Gesick of Virginia Beach, spent the past two General Assembly sessions rallying support and meeting with legislators to pass Seizure Safe School legislation, which will require school nurses, teachers and staff who have regular contact with students to complete training for recognizing and treating seizures.
“This bill is of critical importance because there are only vague standards for how to treat seizures in our schools,” said Suzanne Bischoff, the CEO of the Epilepsy Foundation of Virginia. “In many hours of mediating between parents and schools it has become clear that well-prepared teachers not only save their pupils but also save themselves lots of time.”
If Gov. Ralph Northam signs the bill, dubbed the Jamie and
Brie Strong Act, into law, Virginia will become the sixth state to pass the legislation, joining Illinois, Indiana, Kentucky, New Jersey and Texas.
The Van Cleaves don’t expect any difficulties. Last year, Northam issued a proclamation designating March 26 as Epilepsy Heroes Day with the hope of increasing awareness and to “change the way people think about epilepsy and seizures.”
About 3.4 million people in the U.S. have epilepsy, about 470,000 of whom are children, according to the Centers for Disease Control and Prevention. But people with epilepsy aren’t the only ones who have seizures — the Epilepsy Foundation estimates about 1 in 10 people experience a seizure in their lifetime.
“There’s no cure for epilepsy, so even if you have a child with seizure control — they could have seizure control for two years, and then boom, there’s a seizure,” Jamie’s mother, Christie Van Cleave, said. “Nothing is better than being able to send your kid to school and know that her seizures are under control, but if there is that breakthrough, someone will know how to respond.”
Not all seizures look the same, and in some cases, they can be fatal.
That’s part of why the Gesick and Van Cleave families say the bill is so important.
The Van Cleaves said some of the opposition to the bill came from misunderstandings about what Individualized Education Programs and 504 plans cover.
Most 504 plans include a seizure action plan, but that doesn’t mean everyone is trained to respond to the seizures, and not all students with epilepsy need the academic support the plans offer.
The law won’t cost the state any money. The Epilepsy Foundation provides biennial online training at no cost for states that pass the law.
“It was a little bit disappointing last year when it didn’t pass, but this year it feels even better that it passed because we’ve put so much hard work into it and it finally paid off,” Jamie said.
The law would take effect July 1, 2022 — after Jamie has graduated.
“We, the families, agreed to extend that one year because we feel like schools have really felt like schools have lost a year to COVID and we didn’t want to overwhelm them with this legislation,” Van Cleave said. “We don’t want children to be unsafe another year, but it’s better to have something passed than nothing at all.”
Jamie facilitated the training for teachers at York High School, Yorktown Middle School and Yorktown Elementary School in 2019.
“It took a lot of pressure off of us, but we also recognize that’s not the typical scenario and that’s a lot of responsibility to put on a kid to train the entire school to take care of her just so she’s safe at school,” Van Cleave said.
Even though Jamie won’t benefit directly from the law, she’s built confidence talking about her epilepsy — something she said is often stigmatized.
She was diagnosed with the neurobiological condition about 10 years ago. Epilepsy can be related to a brain injury or genetics, but most of the time — like for Jamie — the cause is unknown.
“Now, I feel a lot more confident and like I can accomplish so much more — not just with epilepsy advocacy but with things outside of that,” Jamie said. “It’s just another part of my life. If people know, they know. It’s not going to affect me, no matter what they think about it.”
She’s about to start her third year with the Epilepsy Foundation’s Teens Speak Up! program, which gives teenagers advocacy training including how to build relationships with elected officials.
“You have two kids — Jamie and Brie — they came together and openly spoke about a condition that is so rarely spoken about. It really, from my perspective, I think it gave them a lot of strength and it’s going to wear away at the stigma,” Van Cleave said.
Jamie takes advanced classes and earns A’s. Her epilepsy hasn’t prevented her from horseback riding, whitewater kayaking or rock climbing.
But, because of her seizures, Jamie hasn’t been able to get her driver’s license. State law requires that she go at least six months without a seizure — her mom says she’s lucky if she makes it six days.
She’s about to undergo another round of testing that will tell her whether she’s eligible for neurosurgery that could stop her seizures.