Legal Rights of Children with Epilepsy in School & Child Care

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:
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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