Nearly Half the Country Has Now Passed Seizure Safe Schools Legislation Providing Safeguards for Students with Epilepsy or a Seizure Disorder
BOWIE, Md., July 26, 2023 — Epilepsy Foundation and Epilepsy Alliance Ohio announced today that House Bill 33 (Sarah’s Law) was recently signed into law by Ohio Governor Mike DeWine, bringing Seizure Safe Schools legislation to nearly half the states in the nation. The law was named after Sarah Linardos (Springfield, Ohio) who struggled with seizures since the age of 15, and at 26, passed away from sudden unexpected death in epilepsy (SUDEP). Sarah’s Law helps school personnel manage students living with epilepsy, or a seizure disorder, and ensures that a Seizure Action Plan is in place.
“Seconds count and information is critical when someone is in medical distress. By enacting “Sarah’s Law” as part of the operating budget, teachers will have individualized information on students who have conditions that lead to seizures and how they can best be helped until medical professionals arrive,” said Governor Mike DeWine.
There are 470,000 children and teens living with epilepsy in the U.S., and of those, 16,900 are in Ohio. Sarah’s Law requires that all school personnel — including nurses and staff, in public and chartered schools — receive seizure first aid training. It also requires schools to create an individualized seizure action plan, in collaboration with parents/guardians and a healthcare professional, for each student with a diagnosed seizure disorder. It also requires at least one employee at each school building to be trained in the implementation of seizure action plans every two years.
“No parent should ever have to lose a child to epilepsy; this law is truly life changing for the children of Ohio,” said Sharon DeVore, Sarah’s mom. “Sarah was such an inspiration to us all. It is our family’s hope that the passage of Sarah’s Law for seizure safe schools will give school personnel a better understanding of epilepsy, and help children maintain their dignity after a seizure. It also gives parents a sense of comfort knowing their child is with someone who is trained to assist them, which was a fear we had sending Sarah to school.”
Seizure Safe Schools is a nationwide initiative led by family advocates and organizational partners to ensure that schools are well-equipped with the tools necessary to provide a safe and supportive environment for students living with epilepsy and seizure disorders. The model legislation has five components; the number of components included in the bill varies by state. To date, almost half of the country has passed some form of Seizure Safe Schools legislation.
“Every student with epilepsy deserves to feel safe, and every parent should have peace of mind that their child will be cared for at school in the event of a seizure,” said Bernice Martin Lee, president and chief executive officer, Epilepsy Foundation. “Living with epilepsy, I personally know how unsettling it can be not knowing when a seizure may happen. I’m glad to see that my home state of Ohio is doing what they can to ensure continuity of care for students with epilepsy so that they can reach their full academic potential.”
Sarah’s Law would not have been made possible without the bill sponsors, Representative Jay Edwards (District 94), Representative Adam Bird (District 63) and Senator Catherine Ingram (District 9), and the work of advocates, families, and other local partners.
“Epilepsy Alliance Ohio is excited to have partnered with the Epilepsy Foundation to help pass Sarah’s Law for Seizure Safe Schools,” said Doug Simmons, director of Advocacy, Epilepsy Alliance Ohio. “Many hands worked together in the passage of this necessary legislation which will only aid to protect school children affected by epilepsy in the state of Ohio.”
The Epilepsy Foundation and the Epilepsy Alliance Ohio are grateful to those who were instrumental in getting the bill across the finish line: Anup Patel, M.D., director of the Complex Epilepsy Clinic Nationwide Children’s Hospital and professor of Clinical Pediatrics and Neurology at The Ohio State University, College of Medicine and Crystal Hagans, DrPH., executive director of the Epilepsy Foundation Ohio.
The Epilepsy Foundation continues to work with its network of local offices, grassroots advocates, and nearly 40 organizational partners to pass this bill in the remaining states and Washington, D.C. To learn more about each state’s legislative efforts, contact email@example.com.
According to the World Health Organization, epilepsy is the most common serious brain disorder worldwide with no age, racial, social class, national or geographic boundaries. The U.S. Centers for Disease Control & Prevention (CDC) estimates that 3.4 million people in the United States are affected by epilepsy. Epilepsy is the underlying tendency of the brain to produce seizures which are sudden abnormal bursts of electrical energy that disrupt brain functions.
About the Epilepsy Foundation
With a network of partners throughout the United States, the Epilepsy Foundation is leading the fight to overcome the challenges of living with epilepsy. The Foundation connects people to treatment, support and resources; leads advocacy efforts; funds innovative research and the training of specialists; and educates the public about epilepsy and seizure first aid. For more than five decades, the Epilepsy Foundation has shone a light on epilepsy to promote awareness and understanding, and to advocate for laws that matter to people with epilepsy, while also funding epilepsy research and supporting epilepsy investigators and specialists in their early careers. In partnership with the CDC, the Epilepsy Foundation has helped to improve access to care for people with epilepsy, expanded its digital reach and online resources in homes across the country, and trained more than 600,000 people in seizure recognition and first aid. The Epilepsy Foundation continues to focus on serving the epilepsy community through advocacy, education, direct services and research for new therapies. To learn more visit epilepsy.com or call 1.800.332.1000. Follow us on Facebook, Instagram, Twitter, LinkedIn, TikTok, and YouTube.
About the Epilepsy Alliance Ohio
Epilepsy Alliance Ohio is dedicated to supporting those impacted by epilepsy in local communities by confronting the spectrum of challenges created by seizures.” For 70 years, Epilepsy Alliance Ohio has been providing direct services to individuals living in Ohio and Kentucky. Our services help those living with epilepsy optimize their understanding of epilepsy and to improve their methods of coping with epilepsy. Our services include counseling for individuals and families, support groups (virtual and in-person), community education to a large variety of audiences, advocacy services, a camp program for children and teens living with epilepsy, art therapy program, residential facilities and vocational day program, information and referral services, SMART program which is a self-management program and a Transition Program. All of your programs and services are in place to help meet the multiple needs and challenges created by living with epilepsy. To learn more visit www.epilepsy-ohio.org. Follow us on Facebook.
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