Talking To Your Child’s School About Epilepsy

Doctor Checking a Form

What are reasonable accommodations for employees with epilepsy?

Talking to your child’s school about epilepsy can be difficult at first if they have no prior knowledge of children experiencing seizures. Since epilepsy is not widely discussed, many people have had to do their own research to present the information to educate their child’s teachers and school administrators on their own.

What can you do to make sure your child is safe and is enjoying a successful learning environment? Follow these steps.

1. Create and submit a Seizure Action Plan to your student’s school.

  • That describes your child’s type of epilepsy and determines what the school will do if your child has a seizure. Talk to your child’s epileptologist or neurologist about it, as you will need their signature. Here is a copy of the seizure action plan that you can download and use.

  • This helps you maintain control by proactively planning for when a seizure takes place.

  • It teaches your school’s clinical staff about your student’s seizures and the medications prescribed.

  • It helps the staff assist your student to avoid seizure triggers.

  • It also provides emergency contact information when a seizure takes place.

2. Create a Personal Student Resume

  • This short informational summary gives the staff a snapshot of your child’s strengths and weaknesses to start the year off right.

  • Make this a one page sheet with highlights about your child: Medical, Behavioral and Academic.

  • Give this annually to any school worker who is working with your child – teacher, specials teacher, teacher’s aide, monitor, bus driver, lunch attendant, recess monitor, etc.

  • Include the following info:

    • Current photo

    • Vision Statement/3 things…

    • My Seizures May Look Like…

    • Important Medical Information

    • I Am Good At…

    • Still Working On…

    • I am interested in…

    • When I am upset…

    • Strategies that work…

    • IEP Classroom Accommodations

    • Parent Contact Info

3. If your child is struggling, and you believe they may need accommodations, contact your student’s Teacher, Guidance Counselor, Principal, or School Psychologist by writing them an email or a letter to mail to them.

  • IN WRITING indicate that you believe your child’s disability is impacting their education. Request a meeting of your child’s educational team to discuss the potential for special education and a multi-factored evaluation (MFE).

  • Make sure to include a date in the letter.

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications and access to state and local government’ programs and services.

  • Epilepsy IS covered by the Americans with Disabilities Act (ADA). 

  • 2008, President George W. Bush signed into law the ADA Amendments Act that clarified and broadened the definition of “disability” to encompass episodic conditions like epilepsy.

  • Education of students with disabilities involves two federal laws:

    • Section 504 of the Rehabilitation Act of 1973: protecting Civil Rights of person with a disability

    • Individuals with Disabilities Education Act (IDEA): special education, IEP – Individualized Education Plan

  • 504 Plan

    • Protects the civil rights of a person with a diagnosed disability

    • Focuses on modifications to the learning environment to meet the needs of a child as adequately as other non-disabled peers.

    • Not considered “special education.”

    • Civil rights law that is applicable everywhere.

  • Individualized Education Plan -IEP

    • Provides a blueprint for a child’s special education experience at school for students with a qualifying disability
      Focuses on unique, specially designed instruction (SDI) and related services (PT, OT, SLP, etc.)

    • Only applicable to public schools

    • The student’s disability must  be negatively affecting the student’s access to the school curriculum

    • IDEA includes 13 disability categories. Epilepsy often falls into “OHI” – other health impairment

4. Parent Mentors are available in your school district. They are hired by the State of Ohio to represent the families of students with disabilities in your area. Click the link below to find the parent mentor in your Ohio county.

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This is a video from the Epilepsy Foundation to learn about epilepsy and how to manage seizures in the classroom. Click on the link above to watch and learn more. Understanding what is happening can help teachers learn how to best assist that student in successful learning. Know that there are over 40 different types of seizures.

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Should I have a Seizure Action Plan?

SeizureActionPlan – Click on this link to download a copy of a seizure action plan to share with your school’s health clinic. This allows for a plan to be in place when your child has a seizure at school.

How to share your child’s information with school

Watch this video from the Cleveland Clinic: Project Care: Taking Epilepsy to School

IDEA – Individuals with Disabilities Education Act

Center for Parent Information and Resources – Check out this website to learn the rights that your child has thanks to IDEA – the Individuals with Disabilities Education Act. Any person diagnosed by a neurologist with epilepsy has rights to receive appropriate and free education.

If you are looking for help with talking to your child’s school administrators about learning and epilepsy, Empowering Epilepsy can help. Many schools are unsure of what to do when creating an IEP (Individualized Education Plan) or 504 plan for epilepsy, as seizures and side effects take so many different forms. We understand first hand the needs of your students in the classroom. Contact leigh@empoweringepilepsy.org for more information.

  • In Cleveland, Ohio, the Epilepsy Association provides Epilepsy Education to local schools. If you are looking for an in-service to provide epilepsy education as well as seizure first aid for students or staff at your child’s school, call Lacey Wood at the Epilepsy Association of Cleveland at 216-579-1330 or click here to learn more.

  • Here is a great video from the Epilepsy Foundation for teachers and other school personnel to learn more about students experiencing seizures at school and how you can help them. https://www.youtube.com/watch?v=8NrQ_O1fwi

  • A great toolkit for Parents of Children with Epilepsy, as well as Teachers of Children with Epilepsy was created by the Epilepsy Foundation and can be found on this page in the bottom left hand corner. Click on the toolkit link. http://www.epilepsy.com/information/parents

  • Here’s a great article about Quality of Life for Children with Epilepsy. It points out the important role parental and peer support play in a child with epilepsy’s life. It also accurately describes how a child with epilepsy’s mental health should be an area of focus for everyone involved in their daily care (Neurologists, Pediatrician, Parents, Family, Friends, Teachers, School Administrators). Psychologists also need to learn more about how to address these issues appropriately to allow these students to learn how they can be successful instead of solely focused on the negative effects of their seizures.
    http://www.medscape.com/viewarticle/833968?src=rss

If you would like to learn more, or would like to meet someone who can help you talk to your school about your child’s epilepsy, please contact Empowering Epilepsy at info@empoweringepilepsy.org or 440-248-6158.

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