Individualized Education Plan: A Roadmap for the Special Education Student with Epilepsy

By Sylvia Blair
Epilepsy USA staff
Posted: September 5, 2003

Teachers who work with students with epilepsy find that some of them learn well, without any need for special help.

Other students, however, perhaps because of medication side effects or slowed memory, have major problems with learning.

Parents should know there is help for their struggling children with epilepsy in the form of an Individual Education Plan or IEP. It is a written document that formally spells out special education needs.

Under the Individuals with Disabilities Education Act, each public school child who receives special education and related services must have an IEP. Each IEP is an individualized document designed for one student.

According to the U.S. Department of Education, Office of Special Education Programs, “the IEP creates an opportunity for teachers, parents, school administrators, related services personnel, and students (when appropriate) to work together to improve educational results for children with disabilities. The IEP is the cornerstone of a quality education for each child with a disability.”

Do All Disabled Children Qualify?

Through a program called “Child Find”, states actively identify, with parent’s permission, children with disabilities in the state that need special education. Or parents may contact the school to ask for an evaluation for their child.

The child is evaluated in all areas related to the disability and the results are used to decide if the child is eligible for an IEP. A team of school personnel and parents review the evaluation together to decide if the child is a “child with a disability” as defined by IDEA.

If parents are not satisfied, they may ask for a hearing to challenge the eligibility decision.

If the team determines the child to be a “child with a disability” as defined by IDEA, they must write an IEP for him within 30 calendar days.

The team schedules an IEP meeting, including the parents, writes the services to be offered in the IEP, and begins to have the school carry out the services.

In her book “Growing Up With Epilepsy,” author Lynn Bennett Blackburn says that in the context of epilepsy, an IEP needs to address the student’s specific seizure type, frequency, time of day when seizures occur, AEDs, social history, family learning history, and the child’s current emotional status.

For example, a goal in an IEP for a student with epilepsy could be “to reduce social stigma and avoid stereotypes.” Actions taken to this end would include giving teachers reading information, providing a workshop from the local Epilepsy Foundation, and including the child in activities with other children.

An IEP That Worked Like a Charm

Seventeen-year-old Jenna Beck of El Cajon, Calif., started having seizures in kindergarten, when a teacher noticed signs of daydreaming.

In Jenna’s case, these episodes were absence seizures. She was having hundreds a day. At first, daily medication controlled the seizures.

Then, under her doctor’s advice, she stopped taking the medicine and enjoyed a year of no seizures. But unfortunately, they came back, with partial seizures added into the mix.

Finding the right medication this time was hard, and her grades went down.

Thankfully, says her mother Diane, the school developed an IEP, which helped Jenna with her studies.

“I can’t say enough good things about the IEP,” said Diane. “The school bent over backwards and followed the IEP down to the letter.”

A Case Where the School Didn’t Do Its Job

Unfortunately, having an IEP doesn’t guarantee it will be carried out effectively by the school.

Epilepsy Foundation Legal Advocacy Coordinator Gina Fiss says she receives many calls from parents and local Epilepsy Foundations reporting that schools in their areas are not implementing IEPs well.

Barb Zorzie of North East, Pa., went through frustration and disappointment surrounding an IEP for her 13-year-old daughter Leila.

In the beginning, things were going well. Leila tested high for her I.Q. and was given a “gifted IEP”, which entitled her to enhanced learning opportunities at the school. She was only in second grade at the time.

Then in third grade, she developed epilepsy. By fifth grade her seizures were so severe, she dropped 50 I.Q. points and had severe memory difficulties due to medications and uncontrolled seizures, said Barb.

“Although the school did not take the gifted IEP away, they added modifications to address her special learning needs after developing epilepsy,” Barb said.

This is where the problems started. The school’s intentions were good, but according to Barb, there was little to no follow-through.

The school put into Leila’s IEP special seating arrangements to help her think more clearly in the classroom and improve her memory skills. The IEP also allowed more time for test taking and homework preparation. Leila desperately needed this help.

To her amazement, Barb found out one day that the instructions in the IEP never went out of the homeroom to the many other teachers involved in Leila’s education. So those special accommodations weren’t happening. What’s worse, Barb found out the school even misplaced the IEP.

Possible Remedies to the Problem

“We’re still working through all this. I set up a meeting at the beginning of the year with every one of Leila’s teachers to make sure they have the IEP,” Barb said.

“One of the best things I’ve done is to keep an IEP binder with all documentation, every phone call to the school, every hallway conversation, all medical records,” Barb said.

In addition to being organized, Fiss adds that being armed with information about your child and his epilepsy is important to make sure the IEP is effective. “Remember, you as the parent are the epilepsy expert. Be vocal, and don’t be afraid to object to other’s points of view in the IEP meeting.”

“If medical administration is an issue for your child, have documentation from the doctor about whether a lay person or trained nurse should give out the medication,” Fiss said.

“Clearly identify your child’s school-based needs in all settings, including the classroom, the lunchroom and the playground. Are there limits? If so, be very specific,” Fiss said.

Another Option for Children with Epilepsy

If a child is not found eligible for special education, parents may seek eligibility under Section 504 of the Rehabilitation Act.

This law requires all agencies that receive federal financial assistance to provide “access” to individuals with disabilities. For example school districts are required to ensure that children with disabilities receive access to educational programs and services. Interpreters, note takers, and readers may meet this goal.

Section 504, like IDEA, has specific eligibility requirements parents should look into.