Epilepsy Foundation Marks Second Year of ‘Seizure Safe Schools’
In the two years since the Epilepsy Foundation launched its nationwide Seizure Safe Schools initiative, a dozen states have enacted legislation aimed at providing a safe school environment for the approximately 470,000 children and teens in the U.S. who have an epileptic condition, including Dravet syndrome.
The initiative calls for state lawmakers to pass legislation ensuring that all school personnel, including nurses, teachers, and volunteers, are prepared to handle epileptic emergencies. Seizures are sudden, uncontrollable electrical brain disturbances that cause temporary abnormalities in behavior, sensations, or states of awareness. They can cause injury to those experiencing them.
“Creating a seizure-safe nation is a top priority for the Epilepsy Foundation,” said Laura Thrall, president and CEO, the Epilepsy Foundation, in a press release marking the initiative’s anniversary. “As part of this, through our Seizure Safe Schools legislative initiative, we have trained more than 170,000 school nurses and school personnel across the country. We congratulate all of the states that have made their schools seizure safe so far. We will continue to work with our local teams, grassroots advocates, and key stakeholders until the bill is passed in all 50 states and Washington, D.C.,” Thrall said.
The initiative began after the 2018 passage in Kentucky of the Lyndsey Crunk Act (HB 147), led by one of the Epilepsy Foundation’s Teens Speak Up! ambassadors, Lyndsey Crunk, and the Epilepsy Foundation of Kentuckiana. The measure provides support and protections for Kentucky students who are living with epilepsy and seizure disorders.
Following that passage, the Epilepsy Foundation developed model Seizure Safe Schools legislation and began an education campaign that led to enactment of measures in Indiana, Texas, and Illinois. Since then, thanks to expanded efforts, the four states, including Kentucky, have been joined by New Jersey, Virginia, Washington, Oklahoma, Colorado, Alabama, Nebraska, and Minnesota.
The initiative has been supported by the Seizure Action Plan Coalition, the National Epilepsy Advocates for Seizure Facebook group, and local Epilepsy Foundation efforts.
“Prior to the passage of these bills, safeguards haven’t always existed for children with epilepsy,” said Colleen Quinn, a New Jersey mother who initiated “Paul’s Law,” a measure signed into law in New Jersey last year regarding individualized healthcare plans for students with epilepsy or seizure disorders. The law is named for Quinn’s son, Paul St. Pierre, who has epilepsy.
“Seizure Safe Schools legislation provides critical protection for students with epilepsy. After Paul’s diagnosis in 2019, Paul felt we needed to create positive change for the 12,000 children in our state. In January 2000, we became the fifth state in the nation to pass this legislation.”
Because some 336,000 children have at least one seizure annually, it’s vital that school personnel and nurses are equipped with the knowledge and tools necessary to provide a safe environment for patients as well as those who may experience a seizure for the first time at school due to a condition other than epilepsy, the foundation said.
Studies have shown that direct access to school nursing and other health services, in addition to disease-specific education, have improved the health and scholarly outcomes of students who have chronic health disorders, the organization added.
As its efforts continue, the Epilepsy Foundation is calling for the involvement of state officials, parents, community organizations, healthcare providers, and others.
Dravet syndrome, a type of epilepsy, affects one in 20,000 to 40,000 people globally.