Sep 6

Guest blog! Epilepsy as a Spectrum Disorder, by Janet Romeo, Community Education Coordinator, EPIC Long Island

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Epilepsy is increasingly recognized as a disease that reaches well beyond seizures.* A diagnosis of epilepsy can be accompanied by a host of cognitive, behavioral, psychiatric, and other neurological disorders. These co-occurring conditions can be related to the seizures, to the anti-epileptic medications, or they could be due to whatever is the underlying cause of the epilepsy. The experience of epilepsy varies from person to person with regard to seizure type, frequency, severity, and duration.

Most people with epilepsy can participate fully in school, but at times, seizures or side effects of seizure medicines may interfere with schoolwork. Some children may be at risk for learning difficulties such as memory and processing deficits. Seizure medicines may make students feel tired, have difficulty paying attention, or forget things more frequently. It may be hard to stay focused during the school day or complete homework at night. If a child is having seizures at night, this could lead to problems at school during the day.

Children with epilepsy are covered under Section 504 of the Rehabilitation Act of 1973, which prohibits discrimination based upon disability. They are entitled to the supports and accommodations they require to have equal access in the classroom and in extracurricular activities. A Section 504 Plan can list a broad range of services and accommodations, like preferential seating, extended time for homework and tests, support of a 1:1 aide in the classroom, cafeteria, playground, school-related trips and extra-curricular activities. It should include a seizure emergency action plan. A parent may also request that all school staff are educated about seizures, their impact, and the appropriate first aid procedures. Section 504 plans are not Individualized Education Program (IEPs). The legal source for an IEP is different. IEPs responds to academic progress issues, not just access. If a student with epilepsy has an IEP, make sure that their seizure emergency action plan is attached as part of the IEP. Section 504 accommodations and the seizure emergency action plan for all non-classroom activities can be included in the IEP or a separate document.

The Epilepsy Foundation of Long Island, a Division of EPIC Long Island, was formed in 1953 by a small group of parents committed to helping children with epilepsy lead productive and satisfying lives. The Foundation is dedicated to educating the community about epilepsy and promotes inclusion for people with epilepsy in the workplace, schools and communities in which they live. Our Community Educators are available to advise parents of their children’s rights in school, and will advocate by accompanying parents to meetings with school administration, and by providing free trainings for all school staff and for students. Advocacy is also available to adults facing workplace issues due to their epilepsy.

For more information, please contact Janet Romeo, Community Education Coordinator, at (516)739-7733, ext. 1-145 or via e-mail to jromeo@epicli.org.
Visit EPIC at www.facebook.com/epiclongisland

*(1) Jensen FE. Epilepsy as a Spectrum Disorder: Implications from novel clinical and basic neuroscience. Epilepsia. 2011;52(s1):1-6. doi:10.1111/j.1528-1167.2010.02904.x.

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