GRAND RAPIDS, Mich. (WOOD) — More than 3.4 million people across the country are living with epilepsy.
In nearly 20 states, ‘Seizure Safe Schools’ legislation has passed. Michigan is not one of them.
The Epilepsy Foundation of Michigan has been pushing for this legislation for two years. Their hope was dashed when Michigan’s legislature officially adjourned for the year, leaving the bill stalled out in the Senate.
The bill will have to be re-introduced in the new year, leaving parents and their kids who live with epilepsy waiting.
“We’ve made so much headway. We had our hearings in the House Education Committee. It went to the House floor. It overwhelmingly passed. It got sent to the Senate and that’s really where things have stopped,” said Brianna Romines, the president of Epilepsy Foundation of Michigan.
Romines spends her days fighting for Michigan families living with epilepsy.
Families like the Olivers: Erika Oliver and her 16-year-old daughter, Ani Oliver.
“Well, Ani had had some symptoms of epilepsy for a few years, but nothing that you would think of as a symptom of epilepsy,” said Erika Oliver.
The often invisible symptoms of epilepsy can leave families confused and frustrated and those around them unaware. One in 26 people will be diagnosed.
“Ani does not generally have any type of convulsive seizures, which is one of the biggest tricks of epilepsy in terms of like the school and other people. They don’t see it necessarily with Ani. … It’s hard for me to see it with Ani,” said Erika Oliver.
That’s part of what the Seizure Safe Schools legislation addresses.
The bill would require seizure recognition and first aid training for all school personnel and requires medication administration training for at least one full-time employee at the school. It would also require a seizure action plan for every student who has epilepsy and has a good Samaritan clause that protects people acting in good faith.
“Nineteen other states have enacted this legislation. The very first to do it was Kentucky. We’ve watched really this whole initiative take the country by storm,” said Romines.
For two years, advocates have been pushing for the Seizure Safe Schools Act to pass and become law in Michigan.
“There’s a huge need for this, and certainly especially I’d say in Michigan, because of the number of school nurses that we have. It’s quite low compared to other states,” said Romines.
Meanwhile, Erika Oliver has spent years to get school personnel to recognize her daughter’s epilepsy, which doesn’t present like the seizures you see on TV.
“It’s like, split seconds. Not even, sometimes, not even a second long. She might stop what she’s doing or stare. It could be a pause in her speech. You don’t notice like you can’t see them,” said Erika Oliver.
Erika Oliver says because school staff haven’t been required to undergo this training, Ani Oliver’s education journey has been rocky.
“She was daydreaming, is what they told me, excessive daydreaming. And she won’t answer when we’re talking to her,” Erika Oliver said. “They would call her name when she was daydreaming and wouldn’t respond. But you can’t respond when you’re having an absence seizure, so it’s tricky.”
“I had a 504 plan at the time for my anxiety. I think that some teachers thought it must have been related to the anxiety, but that wasn’t the case,” said Ani Oliver.
Erika Oliver says she couldn’t get the staff to understand Ani’s epilepsy or give her the resources she needed to succeed.
“I think they thought I was an overprotective, like helicopter mom, and that’s the vibe I got. I eventually pulled Ani out of school and said, we’ll figure it out,” said Erika Oliver.
The Seizure Safe Schools Act would require school personnel go through the training every two years. The Epilepsy Foundation offers it for free with instructors available. The one-hour training can also be done online.
“This is a training that has been developed and (in) coordination with the CDC. It is top notch training. It’s also updated as different seizure types and terminology emerge,” said Romines.
Ani Oliver is now enrolled in a private high school, where her teachers and a few of peers took the seizure safe school training even though it’s not mandated.
“It shouldn’t even have to be a bill, right? It should have been something that was there a long time ago,” said Erika Oliver.
“I want not just kids in Michigan, but all kids everywhere in the United States, to feel like they’re accepted and feel comfortable in the classroom,” said Ani Oliver.