Epilepsy: The Hidden Disability

Most school leaders will have at least one student with epilepsy in their building. That student and their family need the support of the entire school community, and administrators are legally and ethically obligated to lead efforts to provide that support.

In this article, we offer an overview of epilepsy, its potential impact on a student’s educational experience and—importantly—the legal implications for educators in providing an education for students with epilepsy under disability law.

Educators Need Epilepsy Training

Epilepsy is the most common neurological condition of childhood, with the highest incidence occurring in children 10 years old and younger. Students with epilepsy are at greater risk for learning disabilities and low self-esteem, and they might struggle with depression or disconnect from peers, especially after a seizure occurs. They might also experience increased absences, resulting in missed learning and social opportunities.

Given the significant impact and high incidence of epilepsy, it should be top-of-mind in educator training and professional development. Yet, teachers report being unfamiliar with epilepsy and need to know more about the serious physical, academic, mental, and social obstacles that students with epilepsy encounter.

Specifically, educators should be trained to identify the signs that a seizure is occurring and be able to address the educational challenges that occur as a result of epilepsy. All seizures “involve bursts of electrical activity in the brain that can cause involuntary changes in body movement or function, sensation, behavior, or awareness,” according to the Epilepsy Foundation, and a person with epilepsy “has a lower seizure threshold.”

Although seizures can present with individuals falling, shaking, and losing awareness, that’s only one type of seizure. According to the Centers for Disease Control and Prevention (CDC), other signs of a seizure include when a student is unable to answer questions, stares into space, seems confused, wanders, or makes unusual movements.

The Legal Rights of Students With Epilepsy

Epilepsy is a “hidden” disability, because its presence is rarely apparent to others. Nonetheless, educators must be aware of students’ legal protections under Section 504 of the Rehabilitation Act (Section 504), the Americans with Disabilities Act (ADA), and the Individuals with Disabilities Education Act (IDEA).

Section 504 and ADA protect students with disabilities including epilepsy. The laws prohibit discrimination based on any physical or mental impairment that substantially limits one or more major life activities, such as concentrating or learning. Consequently, schools must make reasonable accommodations for a student to gain meaningful access to educational programs—including extracurricular activities—comparable to those offered to their peers.

For example, educators might allow extended time on assignments or modified attendance plans to accommodate the effects of medication or the frequency and time frame of seizures. Educators should analyze situations that could trigger a seizure—stressful activities such as lengthy tests or physical activities such as competitions in physical education classes. Some students with epilepsy are legally entitled to be accompanied by service dogs that detect and respond to seizures, as well as mitigate anxiety.

Students with epilepsy might also qualify for special education and related services. IDEA applies when a student’s educational performance is adversely impacted. For example, some students’ epilepsy might include neurological issues that cause learning difficulties, and those children might need specialized instruction or tutoring.

Because the needs of students with epilepsy fluctuate depending on the type, frequency, and effects of the seizures a student experiences, however, it can be challenging for educators to identify appropriate related services. While schools are not legally required to offer services provided by a physician, schools might need to offer medical procedures provided by nurses or other trained staff that allow the student to remain at school.

Reducing the Risk of Legal Violations

School leaders should prevent legal violations of Section 504, ADA, and IDEA by considering the following recommendations:

Create seizure action plans for individual students. A seizure action plan should guide teachers and staff in supporting a student who is experiencing a seizure, and the school nurse and the student’s health care provider should be involved in developing and implementing the plan. Moreover:

• At a minimum, the CDC recommends that the plan should include information on seizure triggers, behaviors, first aid, details about rescue medications, and parents’ and health care providers’ contact information.
• Seizure action plans should be easily revisable, remain current, and include step-by-step instructions. The plan should account for atypical activities and unexpected events such as field trips and fire drills.

Implement epilepsy-specific training for all staff. Anyone in the building—not just teachers and nurses—might encounter students with epilepsy. Noncertified staff and paraprofessionals are often the most undertrained in medical needs, but they are the employees who most often supervise students when teachers are not present. Further:

• Consider including seizure first aid training, which might be required by state law.
• Ensure that training involves steps to prevent and respond to bullying and harassment of students with epilepsy.
• There’s never a shortage of things for which educators and administrators need to prepare. But with the high incidence of epilepsy and the legal obligations under antidiscrimination laws, providing some additional information to your teachers and staff is a wise investment.

Lila A. Jay is the principal of Smoky Row Elementary School in Carmel, Indiana, and an Ed.D. student at Indiana University.

Janet R. Decker is an associate professor of education law at Indiana University and a co-author of Legal Rights of School Leaders, Teachers, and Students.

Mark Paige is a professor of education law and chair of public policy at the University of Massachusetts Dartmouth.