Children Often Not Given Diastat in School; Denied Participation in School Activities

By Regina Reid
EpilepsyUSA Staff
Posted: August 27, 2003

With the 1975 passage of the Education for All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, millions of parents took comfort in knowing their special needs children had been assured the right to a free and appropriate public education.

Accommodating children with disabilities or special needs requires more than installing wheelchair ramps and mainstreaming them into public school classrooms, but extends to the provision of “related services” that would complete the child’s education experience.

For children with epilepsy, the administration of medication is a necessary related service that ensures the quality of their education. While the majority of school nurses dutifully dispense medications orally, children who need Diastat often find themselves unable to count on the school nurse to administer it.

Diastat, or rectally-administered diazepam, is FDA-approved for the treatment of prolonged and clustered seizures. Unfortunately, some children who require this treatment have been excluded from school programs, daycare and camps.

Because it is given rectally, there is often resistance to its administration from school personnel and others who consider the procedure invasive or think one needs special expertise to deliver it.

Children Left Out of Activities

Some children have been denied the opportunity to participate in school field trips and other academic and nonacademic activities where a school nurse is not present because administrators mistakenly believe the treatment must be administered by a medical professional, or that extensive monitoring is required. However, Diastat’s manufacturer, Xcel Pharmaceuticals, says it is specifically designed for use by non-medical caregivers and offers a training video demonstrating its ease of use.

According to Gina Fiss, staff attorney and legal advocacy coordinator for the Epilepsy Foundation, the issue is complicated by laws in some states prohibiting school nurses from delegating medical duties to non-licensed individuals.

“In instances where there is only one nurse for a school district, a child could go a week without seeing the nurse in his or her school,” she said. “If there is a field trip, a shared nurse is unlikely to accompany the student.

“When other school personnel – a teacher or principal – are not authorized to administer the treatment, then the child is either excluded from the trip or one of the child’s parents must be available to give the medication if needed,” Fiss continued.

Parents Experience Frustration

The feeling that they need to always be within five minutes of their child’s school is a great frustration to parents who give Diastat to control their child’s seizures. In situations where the school staff cannot administer the treatment and a parent cannot immediately arrive at school, a costly 911 call will ensue.

Wendy Garrison, executive director of the Epilepsy Foundation of West Virginia, has dealt with this issue on behalf of consumers and as a former school teacher who spent seven and a half years in the classroom.

Garrison is also the mother of a child with epilepsy who uses Diastat.

“Where we live,” she said, “children with disabilities are still bused to special needs schools, so my son’s school has a full-time nurse to administer Diastat.

“However, this is not the case for many people I talk to,” Garrison continued. “One parent almost had her child refused entry to school when the schools’ administrators recommended the child be home-schooled due to her medication need. Another parent sent Diastat to school with her child the first week of classes only to have it sent back because there was no full-time nurse.

“We have parents who, unfortunately, have had to bring legal action against their child’s school district,” she said.

Garrison has tried to use her prior experience in the classroom to recommend solutions.

“As a former teacher, I try to give alternatives from the perspective of the classroom teacher who may be uncomfortable giving Diastat, suggesting that other personnel – the principal, perhaps, or other willing staff – be trained in its administration,” she said. “The teacher’s role could be to remove others from the area to protect the child’s privacy and dignity.”

Tips For Advocating For Your Child

"The Foundation believes that lack of access to a doctor or full-time nurse is not an acceptable reason to refuse to administer Diastat," Fiss said. Federal law requires that educators accommodate children with disabilities and prohibits the exclusion of children with disabilities from educational activities and programs.

"Parents of children with epilepsy should work with their child’s physician, teacher and childcare provider to ensure that their child will be given Diastat when needed," Fiss continued. "The manufacturer’s training video can be used to educate your child’s teachers or caregivers on the proper administration."

It is also important for parents to share with teachers, school administrators and daycare providers any information regarding their child’s seizure history and any side effects of the medication.

For more information or to request the manufacturer's Diastat patient administration training video, go to www.diastat.com/contactus.html.