Parents across the state are having to make difficult decisions about their children returning to school. Safety must always be a priority, something parents who have a child with epilepsy are well aware of.
Students with epilepsy are far too often surrounded by people who don’t know how to respond should they have a seizure. In 2018, with the help of epilepsy advocate Ruth Schmitz, we decided to change this through the introduction of Seizure Smart Schools (SSS) Legislation.
SSS Legislation ensures school personnel can recognize and respond appropriately to students having a seizure. While drafting language, reaching out to advocacy groups, and working with lawmakers to find authors for the legislation, we found strong support throughout the epilepsy community. We officially introduced this bill to the Minnesota Legislature in 2019.
It came as no surprise when over 100 epilepsy advocates joined us in 2019 for the annual Epilepsy Advocacy Day at the Capitol to meet with legislators and share why their support for this bill is critical.
“From past advocacy work I’ve learned how interested our elected officials are regarding topics their constituents find important. Time and again they demonstrate sincere appreciation for citizens sharing their stories and concerns, and they truly want to assist,” says Trisha Zeller, mother to Rachel, a 13-year-old with epilepsy.
Although Minnesota failed to pass SSS Legislation in 2019, it remained a top priority for our community. In early 2020, Trisha and her daughter Rachel testified in favor of the legislation to the House Education Committee.
This year, as the Minnesota Legislature becomes more open to hearing non-COVID legislation, the Zeller’s have taken an even larger advocacy role prior to Day at the Capitol.
“To prepare for Epilepsy Day at the Capitol, I am reaching out to our elected Senate and House representatives to inform them of Seizure Smart Schools, ask for their support, and share my family’s story,” says Trisha.
Part of this work includes securing a lead author for SSS Legislation. For a bill to be presented and voted on, it must have a lead author in both the Senate and House of Representatives.
To make it more likely this bill is passed, we’re working with other health organizations to join us in this advocacy work. One of our recent supporters includes Gillette Children’s Specialty Healthcare, a non-profit hospital in Saint Paul.
However, we also need the support of individuals. Including parents, students with epilepsy, and adults who know what it’s like to go through years of schooling when teachers and other students don’t understand epilepsy or seizures.
“As a parent, I don’t want to be scared, I don’t want to worry. I want to be assured that my child’s school is educated, informed, and prepared for a seizure. If Seizure Smart Schools saves one child, it more than justifies the informative curriculum with every teacher, administrator, and employee,” says Trisha.
You can support SSS Legislation by joining us on Wednesday, February 24, for our annual Epilepsy Advocacy Day at the Capitol. This year the event is online with a program and virtual visit with legislators.