Make our Schools Seizure Safe!

Get Involved

EFNE is working with legislators in each of the five states we serve (MA, ME, RI, NH and VT) to pass this critical legislation. We currently have bill sponsors in MA, ME, RI & VT and are working to identify a bill sponsor in New Hampshire. The bills will be introduced in January 2025 when the legislators start their session at the State Houses. We look forward to sharing the bill numbers as soon as they are available!

 

If you would like to be actively involved with this effort, get updates and important information as we go through the process you can register as an Epilepsy ENVOY here.

 

Select your state below for information on our efforts

Maine

Recommendation

Pass Seizure Safe Schools legislation to ensure that schools are well-equipped with the tools necessary to provide a safe and enriching environment for students living with epilepsy and seizure disorders.

Background

The legislation makes certain that school personnel are not only prepared but can recognize and respond appropriately and efficiently to the student experiencing a seizure. Even more importantly, the legislation safeguards physician-directed care in the school setting allowing students to access necessary and oftentimes life-saving medication. Lastly, by bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.
 

The model bill has five key components: requiring school personnel to complete a seizure recognition and first-aid response training; requiring that a Seizure Action Plan is made part of the student’s file and made available for school personnel responsible for the student; ensuring that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy; educating and training students about epilepsy and first-aid response; and a Good Samaritan clause.

24 states

have passed seizure-safe schools legislation to date (AL, AR, AZ, CA, CO, CT, FL, GA, IL, KY, LA, MD, MN, MO, MS, NE, NJ, OH, OK, SC, TX, UT, VA, WA)
 

1,700

children and teens living with epilepsy in Maine1
 

11 or more days

of school missed in the past year on average for students aged 6-17 years living with epilepsy2
 

602

students per school nurse in Maine3


1 https://www.cdc.gov/epilepsy/data/index.html
2 https://www.cdc.gov/healthyschools/npao/epilepsy.htm
3 National Education Association. (n.d.). A National Look at the School Nurse Shortage. http://www.nea.org/home/35691.htm

Massachusetts

Recommendation

Pass Seizure Safe Schools legislation to ensure that schools are well-equipped with the tools necessary to provide a safe and enriching environment for students living with epilepsy and seizure disorders.

Background

The legislation makes certain that school personnel are not only prepared but can recognize and respond appropriately and efficiently to the student experiencing a seizure. Even more importantly, the legislation safeguards physician-directed care in the school setting allowing students to access necessary and oftentimes life-saving medication. Lastly, by bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.
 

The model bill has five key components: requiring school personnel to complete a seizure recognition and first-aid response training; requiring that a Seizure Action Plan is made part of the student’s file and made available for school personnel responsible for the student; ensuring that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy; educating and training students about epilepsy and first-aid response; and a Good Samaritan clause.

24 states

have passed seizure-safe schools legislation to date (AL, AR, AZ, CA, CO, CT, FL, GA, IL, KY, LA, MD, MN, MO, MS, NE, NJ, OH, OK, SC, TX, UT, VA, WA)
 

8,400

children and teens living with epilepsy in Massachusetts1
 

11 or more days

of school missed in the past year on average for students aged 6-17 years living with epilepsy2
 

419

students per school nurse in Massachusetts3


1 https://www.cdc.gov/epilepsy/data/index.html
2 https://www.cdc.gov/healthyschools/npao/epilepsy.htm
3 National Education Association. (n.d.). A National Look at the School Nurse Shortage. http://www.nea.org/home/35691.htm

New Hampshire

Recommendation

Pass Seizure Safe Schools legislation to ensure that schools are well-equipped with the tools necessary to provide a safe and enriching environment for students living with epilepsy and seizure disorders.

Background

The legislation makes certain that school personnel are not only prepared but can recognize and respond appropriately and efficiently to the student experiencing a seizure. Even more importantly, the legislation safeguards physician-directed care in the school setting allowing students to access necessary and oftentimes life-saving medication. Lastly, by bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.
 

The model bill has five key components: requiring school personnel to complete a seizure recognition and first-aid response training; requiring that a Seizure Action Plan is made part of the student’s file and made available for school personnel responsible for the student; ensuring that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy; educating and training students about epilepsy and first-aid response; and a Good Samaritan clause.

24 states

have passed seizure-safe schools legislation to date (AL, AR, AZ, CA, CO, CT, FL, GA, IL, KY, LA, MD, MN, MO, MS, NE, NJ, OH, OK, SC, TX, UT, VA, WA)
 

1,500

children and teens living with epilepsy in New Hampshire1
 

11 or more days

of school missed in the past year on average for students aged 6-17 years living with epilepsy2
 

347

students per school nurse in New Hampshire3


1 https://www.cdc.gov/epilepsy/data/index.html
2 https://www.cdc.gov/healthyschools/npao/epilepsy.htm
3 National Education Association. (n.d.). A National Look at the School Nurse Shortage. http://www.nea.org/home/35691.htm

Rhode Island

Recommendation

Pass Seizure Safe Schools legislation to ensure that schools are well-equipped with the tools necessary to provide a safe and enriching environment for students living with epilepsy and seizure disorders.

Background

The legislation makes certain that school personnel are not only prepared but can recognize and respond appropriately and efficiently to the student experiencing a seizure. Even more importantly, the legislation safeguards physician-directed care in the school setting allowing students to access necessary and oftentimes life-saving medication. Lastly, by bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.
 

The model bill has five key components: requiring school personnel to complete a seizure recognition and first-aid response training; requiring that a Seizure Action Plan is made part of the student’s file and made available for school personnel responsible for the student; ensuring that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy; educating and training students about epilepsy and first-aid response; and a Good Samaritan clause.

24 states

have passed seizure-safe schools legislation to date (AL, AR, AZ, CA, CO, CT, FL, GA, IL, KY, LA, MD, MN, MO, MS, NE, NJ, OH, OK, SC, TX, UT, VA, WA)
 

1,300

children and teens living with epilepsy in Rhode Island1
 

11 or more days

of school missed in the past year on average for students aged 6-17 years living with epilepsy2
 

632

students per school nurse in Rhode Island3


1 https://www.cdc.gov/epilepsy/data/index.html
2 https://www.cdc.gov/healthyschools/npao/epilepsy.htm
3 National Education Association. (n.d.). A National Look at the School Nurse Shortage. http://www.nea.org/home/35691.htm

Vermont

Recommendation

Pass Seizure Safe Schools legislation to ensure that schools are well-equipped with the tools necessary to provide a safe and enriching environment for students living with epilepsy and seizure disorders.

Background

The legislation makes certain that school personnel are not only prepared but can recognize and respond appropriately and efficiently to the student experiencing a seizure. Even more importantly, the legislation safeguards physician-directed care in the school setting allowing students to access necessary and oftentimes life-saving medication. Lastly, by bringing awareness to the entire educational community, students living with epilepsy or a seizure disorder can feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.
 

The model bill has five key components: requiring school personnel to complete a seizure recognition and first-aid response training; requiring that a Seizure Action Plan is made part of the student’s file and made available for school personnel responsible for the student; ensuring that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy; educating and training students about epilepsy and first-aid response; and a Good Samaritan clause.

24 states

have passed seizure-safe schools legislation to date (AL, AR, AZ, CA, CO, CT, FL, GA, IL, KY, LA, MD, MN, MO, MS, NE, NJ, OH, OK, SC, TX, UT, VA, WA)
 

700

children and teens living with epilepsy in Vermont1
 

11 or more days

of school missed in the past year on average for students aged 6-17 years living with epilepsy2
 

275

students per school nurse in Vermont3


1 https://www.cdc.gov/epilepsy/data/index.html
2 https://www.cdc.gov/healthyschools/npao/epilepsy.htm
3 National Education Association. (n.d.). A National Look at the School Nurse Shortage. http://www.nea.org/home/35691.htm

Background

Students living with epilepsy deserve to feel safe in school, reach their full academic potential, and build meaningful friendships without fear of being stigmatized.

Seizure Safe Schools Legislation

Seizure Safe Schools legislation will ensure that schools are well-equipped with the tools necessary to provide a safe and enriching environment for students living with epilepsy and seizure disorders. 

The bill has five key parts:

  • Requires school personnel to complete a seizure recognition and first-aid response training
  • Requires that a Seizure Action Plan is made part of the student’s file and made available for school personnel responsible for the student
  • Ensures that any FDA-approved medication prescribed by the treating physician is administered to the student living with epilepsy
  • Educates and trains students about epilepsy and first-aid response
  • Includes a good Samaritan clause

What Can We Do right now? 

LEGISLATORS NEED TO HEAR FROM YOU.  

It’s real stories like yours that put a face to the issues.  It’s real stories that move them to support these bills.  This is what legislators understand best, how their decisions impact real individuals. 

BE PREPARED!  

Once the bills are introduced, we want to be prepared to get important information to legislators so they can make informed decisions to hopefully vote in favor of the bill.

Right now, we need parents, students, educators and care providers to get their stories in writing!  We are encouraging this because we often get very short notice when a Committee will hear the bill, and folks may feel rushed and not even have the time to get it submitted to the committee. We want to collect your stories early on, so we are ready to act quickly. 

EFNE can provide an outline to help you write an effective story. We are especially interested to hear from folks willing to share their (or their child’s) experience dealing with their schools.  What problems have you had?  Has your child been denied school services because of their epilepsy.  Have you been excluded from participating in any school activities?  Have you had problems getting seizure rescue meds administered as needed?  Problems with the school not following an IEP or 504 plan? 

Click here if you would like a template of how to write your story

Read samples of past testimony on Seizure Safe Schools legislation: 

Kate Morton

Ben Herman

Erica Rogers-Jensen

Clare Tyler

Jessica Gavinson

If you would like to be actively involved with this effort, get updates and important information as we go through the process you can register as an Epilepsy ENVOY here.