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 7) Discuss with the IEP team alternative steps that can be taken to ensure Amalie’s safety in the community. How often does Amalie have seizures on community outings? Is she having seizures or is she engaging in avoidance behavior? How do staff react? If she is engaging in avoidance behavior, does she get reinforced by having two staff people rush to her and hover? Would sitting in a wheelchair and being pushed around give her even more reinforcement? Would it teach her dependence? If she is actually having seizures, what does her physician recommend? The precautions necessary inside a carpeted auditorium will be different from those necessary for an outdoor trip to a place with concrete sidewalks. Consider alternatives that maintain Amalie’s dignity. If an outing will mostly occur outdoors and Amalie is subject to frequent drop seizures, perhaps a soft or hard helmet might be an appropriate means of resolving the impasse. If the outing will be primarily indoors, perhaps no helmet would be necessary, and staff could simply stand by to intervene as necessary. See Chapter 8 for an alternate scenario with the same facts. Case Scenario 2 — Communication Regarding Seizures at School Benjamin is a six-year-old student with epilepsy who has several seizures a week. He receives a combination of special education and general education services at Stonewall Elementary School, his neighborhood school. Benjamin’s neurologist is adjusting his medication dosage, and it is particularly important that his seizure frequency be logged accurately so that his parents can report to the neurologist on a regular basis. Stonewall staff have not been reporting daily, and Benjamin is unable to tell his parents if he has had a seizure at school. When his parents have contacted the principal, she responds that her teachers have too much paperwork and too many responsibilities, and she does not want to burden them further. Benjamin’s parents wish to resolve this in as cooperative a manner as possible. Discussion and Possible Advocacy Strategy: Communication issues often lie at the heart of disputes between families and school districts. A quick resolution of this matter would be in everyone’s best interest, particularly Benjamin’s, both medically and educationally. The following advocacy strategy might be useful: 1) Obtain a letter from Benjamin’s neurologist explaining the need for accurate information from the school in getting a complete picture of what is happening with Benjamin over the course of each day. 2) Develop a checklist for Benjamin’s teacher or other classroom staff to complete on a daily basis. The form could list the date and types of seizures Benjamin has, and include a space for the time the seizure began and ended. If additional information is needed, the form could include space for that as well. Summarizing seizure information on a checklist imposes very little burden on school staff, as opposed to requiring a narrative report. A standard seizure observation record form is included in Appendix C. 93
Special Education and Students with Epilepsy: Specific Issues 3) Request an IEP meeting to request use of the checklist and incorporate use of the checklist onto the IEP. 4) If the team is still resistant and refuses to agree to this basic communication tool, consider a complaint to the district’s special education director or the state department of education’s special education director. Case Scenario 3 — Ketogenic Diet Talia is a five-year-old kindergarten student with epilepsy attending Enchanted Garden Elementary School, her neighborhood public school. She is on the ketogenic diet. Talia’s mother wants Enchanted Garden to provide all of Talia’s food, to train all school staff about the ketogenic diet, and to eliminate snacks and all food aspects of all party celebrations in Talia’s class since she cannot eat the foods served at these celebrations. Enchanted Garden has refused to provide Talia’s food and to eliminate snacks and party food, but has agreed to train her teachers regarding the diet. Talia’s parents and Enchanted Garden are at a standoff, and Talia’s parents have sought legal representation. Discussion and Possible Advocacy Strategy: Talia’s parents need to understand that they are not likely to obtain everything they are seeking for Talia. Although there may be some room for compromise, the school’s position is not unreasonable, and an attorney or advocate will have to work through these issues with Talia’s parents in a way that helps them understand what Talia’s rights are under the law. The following advocacy strategy may be useful: 94 1) Provision of ketogenic diet food should be viewed similarly to provision of other supplies that students need at school, such as diapers, gastrostomy tube equipment, oxygen and medications. Although school staff must change diapers, administer g-tube feedings and oxygen, and provide prescribed medication to students during school hours, it is not the school system’s responsibility to obtain and provide these personal medical supplies or equipment. It is likely that if Talia’s parents were to pursue due process or go to court seeking that the school system provide the food for the ketogenic diet, they would lose. Therefore, it is important to help Talia’s parents understand the responsibility they have to provide Talia’s food and the corresponding responsibility school staff have to give Talia the food provided by her parents and to ensure that the diet is maintained at school. 2) Training of all school staff regarding the ketogenic diet is an important element of Talia’s education, and this should be incorporated into Talia’s IEP. At a minimum, staff need to understand what the diet is, how it works, the rigorous requirements the diet imposes, and the consequences if there is any deviance from the diet. 3) There is, perhaps, some room for compromise on the issue of snacks and party food. Talia’s parents are not likely to prevail on their request to eliminate all
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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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(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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