The Seizure Safe Schools initiative aims to ensure students with epilepsy feel safe in school. This will help them express their full academic potential and build lasting friendships without fear of stigma. Seizure Safe Schools legislation also seeks to ensure standardized, in-case-of-seizure emergency protocols by training school personnel and students on best practices. “A lot of people don't know what to do when someone is having a seizure,” said one mother on MyEpilepsyTeam. “It would be nice knowing our kids are in good hands.”

Since 2018, four states have followed Kentucky’s lead in passing Seizure Safe School legislation. Several other states have introduced bills or have advocacy efforts underway to enact seizure safe laws in their public schools.

What Is the Seizure Safe Schools Initiative?

The Seizure Safe Schools initiative provides students with epilepsy an opportunity to make the most of their educational experience by ensuring access to first aid (through trained staff) and the ongoing support and care they need while at school.

The model Seizure Safe Schools bill is a four-point plan to raise awareness about epilepsy and to ensure a uniform, high-quality standard of response, care, and support for students with seizure disorders. The four components are:

1. Train school nurses, educators, health care aides, and other school employees and volunteers on seizure recognition, emergency response, and first aid delivery.
2. Mandate that every student with a diagnosed seizure disorder has a seizure action plan (including a copy of any prescriptions) on file. All school personnel responsible for the student should be able to access this plan.
3. During the school day, ensure students with epilepsy can access the FDA-approved, anti-epileptic drugs (AEDs) prescribed to them by their treating physician.
4. Raise epilepsy awareness among the student community, and teach students basic seizure-response measures.

History of the Seizure Safe Schools Initiative

Kentucky became the first state to enact a Seizure Safe Schools law in April 2018. The law was the result of two years of advocacy by Lyndsey Crunk, an ambassador of Epilepsy Foundation’s Teens Speak Up! Program. Building off that success, the Epilepsy Foundation rolled out the Seizure Safe Schools initiative nationwide.

To date, five states have passed Seizure Safe Schools legislation.

• Kentucky enacted HB 147, the Lyndsey Crunk Act, in April 2018.
• Indiana passed HB 1089 in May 2019, and the law went into effect July 2020.
• Texas passed Sam’s Law or HB 684, in June 2019.
• Illinois passed its Seizure Smart School Act, HB 1475, in July 2019, and it went into effect in July 2020.
• New Jersey passed S 4141 or Paul’s Law in January 2020.

Several states have introduced Seizure Safe School bills as well. These include:

• Virginia’s SB 420, the Jamie and Brie Strong Act, introduced in January 2020
• Iowa’s SF 2056, introduced in January 2020
• California’s AB 2116, introduced in February 2020
• Wyoming’s HB 0141, introduced in February 2020
• Colorado’s HB 20-1358, introduced in March 2020

Epilepsy Foundation’s local chapters and advocates have been working together with legislators to draft, introduce, and enact similar laws in every state.

Why Do States Need Seizure Safe Schools Laws?

Living with a serious, chronic condition like epilepsy isn’t just a danger to a child’s health. Epilepsy can pose a threat to a child’s ability to thrive socially, emotionally, and academically.

Safe and Successful Students

Recent research shows that good grades aren't just based on intelligence. Kids learn better and fare better at school when they feel safe. Serious health conditions such as epilepsy affect students’ physical and mental well-being, performance, participation, and school attendance.

According to the U.S Centers for Disease Control and Prevention (CDC), children ages 6 to 17 years old with epilepsy were more likely to have missed 11 or more days of school in the past year when compared to children with other chronic illnesses. Kids with epilepsy participated less in extracurricular sports or clubs compared with students with other medical conditions. Students with epilepsy were also more likely to face learning difficulties in school or to require special education services than their peers.

A child’s chances of academic success increase when communities, schools, families, and parents work together to support them. Students with epilepsy often experience bullying or say they feel unaccepted by their peers who don’t understand their condition. The Seizure Safe Schools initiative aims to raise awareness about epilepsy and thereby eliminate the stigma.

Healthier School Communities

When students with chronic conditions have direct access to a school nurse and other health services, health outcomes improve. School-based health services can connect students to appropriate clinical care and disease management outside of school.

When a student’s primary health care provider collaborates with school-based health services, the continuity of that student’s epilepsy management plan is more likely to be successful. Consistent treatment is key to helping students with epilepsy succeed at school.

Additionally, when schools identify and track students who have chronic health conditions, they’re better able to assess the potential need for more case management. They may also be able to enroll students into private, state, or federally funded insurance programs (where eligible).

Epilepsy is one of the most common neurological disorders and the leading cause of seizures worldwide. According to the CDC, 3.4 million people in the United States are living with epilepsy. Of these, 470,000 are children.

Living with or caring for a school-aged child with epilepsy comes with unique challenges. Know that you’re not alone. More than 18,000 members of MyEpilepsyTeam have a child with epilepsy. Join the team for online support from people in your shoes.