Legal Rights of Children with Epilepsy in School & Child Care AN ADVOCATE’S MANUAL AN ADVOCATE’S AN ADVOCATE’S MANUAL AN ADVOCATE’S First Edition Legal Rights of Children with Epilepsy in School and Child Care – An Advocate’s Manual First Edition Prepared by Leslie Seid Margolis Managing Attorney Maryland Disability Law Center Edited by Gary Gross Director Jeanne A. Carpenter Epilepsy Legal Defense Fund Epilepsy Foundation of America® User is hereby granted permission to copy or disseminate this publication, either in print or electronic format, provided such copies are not made, distributed or used for commercial purposes, and that the user affixes the Epilepsy Foundation’s copyright notice, and states that copying is by permission of the Epilepsy Foundation. To disseminate otherwise, or to republish, requires written permission from the Epilepsy Foundation. Permission can be obtained by contacting the Foundation’s Legal Department at 301-459-3700. The Epilepsy Foundation does not evaluate, promote or endorse commercial products, and nothing contained in this document is intended to be an endorsement of any particular treatment for seizures or epilepsy. © 2008 Epilepsy Foundation of America, Inc. Epilepsy Foundation® and Epilepsy Foundation of America® are registered trademarks of the Epilepsy Foundation of America, Inc. TABLE OF CONTENTS ACKNOWLEDGEMENTS …………………………………………….xiii ABOUT THE AUTHOR ...........................................................................xiv INTRODUCTION …………………………………………………………1 CHAPTER ONE What Do Attorneys and Advocates Need to Know About Seizures and Epilepsy?........................................................................................................ 5 1.1Q: What is a seizure? ................................................................................................ 5 1.2Q: What is epilepsy?................................................................................................. 5 1.3Q: How common is epilepsy?................................................................................... 5 1.4Q: How is epilepsy classified?.................................................................................. 5 1.5Q: Are there different types of seizures? .................................................................. 6 1.6Q: What are partial seizures?.................................................................................... 6 1.7Q: What are generalized seizures?............................................................................ 7 1.8Q: Are there particular epilepsy syndromes or conditions?...................................... 7 1.9Q: Can seizures be triggered by anything in particular?........................................... 9 1.10Q: What is status epilepticus?................................................................................... 9 1.11Q: How is epilepsy treated?...................................................................................... 9 1.12Q: What are the standard antiepileptic drugs (AEDs)?............................................. 9 1.13Q: What are the side effects of AEDs?................................................................... 10 1.14Q: What is the Ketogenic diet? ................................................................................10 1.15Q: Does the ketogenic diet have side effects or drawbacks?.................................. 11 1.16Q: What is the vagus nerve stimulator (VNS)? ...................................................... 11 1.17Q: Does the VNS have side effects or drawbacks? ................................................ 11 1.18Q: How may epilepsy affect a student? .................................................................. 11 1.19Q: What is the appropriate intervention for a child who has a seizure at school or in a child care setting?........................................................................ 12 1.20Q: What are the practical implications of this information for attorneys and advocates working with children with epilepsy and their families?.................. 13 i CHAPTER TWO What Laws Apply to Children with Epilepsy? ........................................ 14 2.1Q: What are the primary laws that apply to children with epilepsy?...................... 14 2.2Q: What are the major provisions of the IDEA? .................................................... 14 2.3Q: What is a “free appropriate public education?”................................................. 14 2.4Q: Are all children with disabilities entitled to special education services under the IDEA?.......................................................................................................... 15 2.5Q: Since epilepsy is not included as one of the listed disabilities, does that mean students with epilepsy are not protected by the IDEA?..................................... 15 2.6Q: How does a school system decide that a student needs special education? .......15 2.7Q: Does the IDEA impose requirements for the evaluation process? .................... 16 2.8Q: What is an IEP?.................................................................................................. 17 2.9Q: Who develops the IEP?...................................................................................... 17 2.10Q: What are the related services referred to above? ............................................... 18 2.11Q: What does “least restrictive environment” mean?............................................. 18 2.12Q: Does the IEP team have additional responsibilities as it develops the IEP? ..... 18 2.13Q: Can students with disabilities be suspended for disciplinary reasons?.............. 19 2.14Q: Do parents have rights in the special education process?.................................. 20 2.15Q: What rights do parents and students have under the IDEA if English is not their native language? ........................................................................................ 21 2.16Q: What is Section 504 of the Rehabilitation Act of 1973? ................................... 21 2.17Q Who is protected by Section 504? ..................................................................... 21 2.18Q: What is considered a “physical or mental impairment” under Section 504?..... 21 2.19Q: Are all people with epilepsy automatically covered by Section 504? ............... 22 2.20Q: What is a “major life activity” under Section 504? ........................................... 22 2.21Q: What are the requirements of Section 504 for public school systems? ............. 22 2.22Q: Does Section 504 require placement of students in the least restrictive environment? ..................................................................................................... 23 2.23Q: Does Section 504 have requirements about evaluation and placement? ........... 23 ii 2.24Q: Does Section 504 have requirements about physical accessibility of buildings?........................................................................................................... 23 2.25Q: Does Section 504 apply to students with disabilities beyond the age of 21? .... 24 2.26Q: What happens if a school district or other recipient of federal funding violates Section 504?....................................................................................................... 24 2.27Q: What is the Americans with Disabilities Act?................................................... 24 2.28Q: Does the ADA apply to schools? ………………………………………………25 2.29Q: What happens if a school violates the ADA? .................................................... 25 2.30Q: Must parochial schools comply with Section 504 or the ADA ………………..25 CHAPTER THREE What are the Legal Rights of Children with Epilepsy in the Child Care Setting? .................................................................................... 27 3.1Q: Can a child care provider reject a child from care on the basis of the child’s epilepsy? ............................................................................................................ 27 3.2Q: What general obligations do child care providers have under the ADA and Section 504?....................................................................................................... 27 3.3Q: Can a child care provider reject a child with epilepsy from care because the child needs routine administration of antiepileptic drugs (AEDs) to prevent or minimize seizures? ........................................................................................ 28 3.4Q: Can a child care provider reject a child with epilepsy from care because the child would require administration of emergency antiepileptic medication, such as diazepam rectal gel, in the event of a prolonged seizure or cluster of seizures?............................................................................................................. 29 3.5Q: What level of individualized attention must be provided to a child with epilepsy?........................................................................................................... 30 3.6Q: What accommodations must a child care provider make for a child with epilepsy?.................................................................................................... 31 3.7Q: Are all child care providers required to make the same level of accommodations for a child with epilepsy?....................................................... 31 3.8Q: May child care providers charge parents of a child with epilepsy for the cost of needed