Legal Rights of Children with Epilepsy in School & Child Care

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Legal Rights of Children with Epilepsy in School and Child Care snacks and party food from Talia’s classroom; this is a fairly drastic modification to classroom routine for young children and, based on cases involving children with peanut and tree nut allergies, it is not a winning position. However, perhaps Talia’s parents can consult with her neurologist about having some of her daily calories be in the form of a snack that she could have at the same time that her classmates have their snack, and perhaps her teacher can notify her parents ahead of time when there will be a celebration, so that arrangements can be made to permit Talia to eat something along with her classmates, even though it will not be the same food. If this is not possible, perhaps Talia’s teacher can identify a special job or activity that Talia can perform during snack time or celebrations so that she does not feel quite as left out while other children are eating. At the same time, in addition to training school staff about the ketogenic diet, it may be helpful to train Talia’s classmates as well. It is possible that out of loyalty and compassion to Talia, her classmates will choose to forego a snack or choose to celebrate birthdays in a different way, but the choice should be theirs, it cannot be imposed by Talia’s parents. Case Scenario 4 — Vagus Nerve Stimulator (VNS) and Attendance at School Sam is a fifteen-year-old young man with epilepsy and other developmental disabilities who attends Hillside High School, a separate special education school. He recently had a VNS implanted and has been cleared by his neurologist to return to school. Although he has always had a variety of types of seizures at school, he has had several intense tonicclonic seizures since he has returned, although none has lasted long enough to require emergency medication. However, the principal of the school has contacted Sam’s mother and asked her to keep Sam home until his seizures are under control. Sam’s mother seeks legal assistance to get Sam back into school. Discussion and Possible Advocacy Strategy: As a school that exclusively serves students with developmental disabilities, Hillside should be accustomed to students with seizures and, in fact, Sam has a history of having seizures at school. It appears that the implantation of the VNS, along with the fact that Sam has had several seizures that are perhaps more intense than his usual seizures, have made school staff, or at least the principal, nervous. This situation needs to be addressed quickly before Sam misses many days of school. The following advocacy strategy may be helpful: 1) Contact the principal and offer training to school staff from the local Epilepsy Foundation affiliate (or another organization) regarding the VNS and its use. Explain to the principal that the VNS may take some time to program to the optimal level. 2) Obtain a letter from Sam’s neurologist explaining the VNS and how it affects Sam. The letter should make clear that Sam can safely attend school, and should explain any responsibility the school needs to exercise with respect to the VNS, such as swiping a magnet over the implant if Sam has a seizure. 95
Special Education and Students with Epilepsy: Specific Issues 3) Inform the principal that excluding Sam from school without a valid reason is equivalent to a suspension and tell her that if her intent is to suspend Sam, she needs to provide the required written notice. Often, pressing the issue is enough to get a student back in school immediately. 4) If necessary, make a complaint to the special education director for the district, or an IDEA complaint to the state department of education. See Chapter 8 for discussion of an alternate advocacy strategy regarding this same scenario. 96
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AN ADVOCATE’S MANUAL AN ADVOCATE
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CHAPTER TWO What Laws Apply to Chil
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ABOUT THE AUTHOR Leslie Seid Margol
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Legal Rights of Children with Epile
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CHAPTER TWO What Laws Apply to Chil
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What Laws Apply to Children with Ep
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