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 seizure status, his or her participation in practice sessions and games or meets might need to be adjusted. A school cannot simply deny a student with epilepsy the opportunity to participate on a sports team on the basis of his or her epilepsy. The IEP team or family and coach will need to conduct an individualized examination of the student’s situation and the requirements of the team, and make a decision about the ability of the student to participate and at what level he or she can do so. Case Scenarios Case Scenario 1 — Restraint/Behavior Intervention/Safety Issues Amalie is a seventeen-year-old nonverbal young woman with an intractable seizure disorder, mental retardation and aggressive behaviors due to a chromosomal disorder. She attends Edgeview Falls, a public separate special education school. She has drop seizures, absence seizures and tonic-clonic seizures. She also engages in avoidance behavior in which she will drop to the floor to avoid demands being made on her. She has a behavior plan that includes use of a seatbelt to keep her in her chair during instructional periods. The school’s behavior specialist developed the plan based on a one-hour observation of Amalie and a cursory review of her records. He did not speak with Amalie’s parents, her doctors or the school nurse; nor did he review her medications or their side effects. The behavior specialist tells Amalie’s parents that the seatbelt is for safety reasons so that Amalie will not fall from her chair during a seizure. On community outings, the IEP team wants to use a leash with Amalie, as well as have her be supported by two staff. The alternative they present to Amalie’s parents is to have Amalie travel by wheelchair. Amalie has sustained a number of injuries in the classroom, some requiring stitches, because she fell against sharp furniture corners during seizures. Her parents seek advocacy assistance. Discussion and Possible Advocacy Strategy: The seatbelt plan proposed by the behavior specialist is nothing more than a restraint, and Amalie’s parents are correct to be concerned. The behavior specialist has made no effort to try to distinguish between Amalie’s avoidance behavior, which should be addressed through a behavior plan, and her seizures, which are a medical, not a behavioral, issue. Likewise, the behavior specialist has not tried to determine the effect Amalie’s medications may have on her behavior or even what effect her seizures have on her behavior. Nor has the specialist explained why, if he thinks the seat belt is important for safety reasons, it would be used only during instructional periods. Neither has he offered any explanation for his position that it is safe to restrain Amalie with a seatbelt in a chair during a seizure. Further, the behavior specialist and the team appear not to have considered the use of positive behavior supports, strategies and interventions, as required by the IDEA. 34 C.F.R. 300.324(a)(2)(i). Nor does it appear that Amalie has had an assistive technology assessment to address her communication needs, which may also have an impact on her behavior. 91
Special Education and Students with Epilepsy: Specific Issues Likewise, the team has proposed a restrictive and degrading method of managing Amalie on school outings; the choice the parents have been given between a leash and a wheelchair is unacceptable. At the same time, as overly concerned as the school staff appear to be about Amalie (or about their liability) in the community, they have taken few, if any, steps to make the classroom area safe. The following advocacy strategy may assist Amalie: 92 1) Ask the behavior specialist for the research that supports his recommendation of a seatbelt for Amalie. Similarly, ask for the research that supports the team’s recommendation that a leash be used with Amalie in the community or, if not a leash, that a wheelchair be used to move a student with epilepsy who is able to walk on his or her own. The IDEA requires that IEPs include a statement of the special education and related services and the supplementary aids and services, “based on peer-reviewed research to the extent practicable,” to be provided to the student. 34 C.F.R. 300. 320(a)(4). It is unlikely that the team will be able to produce any research to support its position. Advocate against these highly restrictive recommendations. 2) Advocate for a meaningful functional behavior assessment and behavior intervention plan based on positive behavior interventions. As a first step, advocate for the behavior specialist, the school nurse and Amalie’s neurologist to discuss the relationship between her seizures, her medications and her behavior. It is critical to try to distinguish when Amalie is having a seizure from when she is dropping to the ground to avoid engaging in a task. A revised behavior intervention plan should be included as part of Amalie’s IEP. 3) Advocate for an assistive technology assessment to address Amalie’s communication needs. The assessor should also work with the behavior specialist, as Amalie’s behavior may be related to her lack of ability to communicate her needs. 4) Amalie should also have a health care plan that explains the types of seizures she has, the medications she takes and the side effects they cause, and the impact all of this has on her education. This health care plan should be included as part of Amalie’s IEP. 5) Advocate for additional training for staff so they are better able to distinguish Amalie’s seizures from her avoidance behavior. This training should be included on Amalie’s IEP as a programmatic support. 6) Discuss with the IEP team steps that can be taken to make the classroom safer for Amalie. For example, sharp furniture corners could be padded with foam. If the classroom is not carpeted, inexpensive rugs or carpet could be put down to help cushion falls. Any modifications agreed upon should be included in the IEP.
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AN ADVOCATE’S MANUAL AN ADVOCATE
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User is hereby granted permission t
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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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Myoclonic seizures: Seizures in whi
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(Student’s name) needs assistance
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7. FIELD TRIPS AND EXTRACURRICULAR
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Seizure Observation Record Student
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SAMPLE COMMUNICATION FORM FOR STUDE
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SAMPLE COMMUNICATION FORM FOR STUDE
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APPENDIX E: SELECTED STATE LAWS ON
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Selected State Laws on School Medic
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Legal Rights of Children with Epilepsy in School & Child Care

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