Diabetes Denied: Illness in the Classroom

Imagine if your child was being denied life-saving treatments for a chronic illness during the school day. Find out how two moms took on — and beat — the principal, school board and Virginia government.

By Gordon Young

Crystal Jackson didn't have much concern about her daughter, Devin, playing soccer and taking ballet classes with the other neighborhood kids in Loudoun County, Virginia. After all, she and her husband could keep an eye on the energetic 10 year old. But attending school was a different story.

Devin has type 1 diabetes, and the school district refused to let teachers and other employees administer life-saving glucagon injections to diabetic students suffering from severe insulin reactions. School district officials said only registered nurses could administer shots, but RNs weren't on call at Loudoun County schools. The school district adopted a policy of dialing 911 instead.

"We would have been asking our staff to commit an illegal act based on laws in place at the time," said Ned Waterhouse, head of pupil services in the Loudoun County district.

But for Jackson, this wasn't an issue of policy; this was, potentially, her daughter's life. She feared her daughter could die or suffer brain damage in the time it might take for paramedics to arrive.

After meeting with school district officials and speaking to school board members, Jackson and Sandi Pope, the mother of two children with type 1 diabetes, enlisted the help of the American Diabetes Association (ADA). Eventually, Virginia State Senator William Mims introduced legislation forcing Virginia public schools to train personnel to administer both insulin and glucagon shots.

But there was still a lag time of several months before the law went into effect, and the school district was unwilling to implement the requirements early. Jackson and Pope decided to file a complaint with the U.S. Department of Education's Office of Civil Rights (OCR).

Jackson argued that parents "were being asked to send [their] children to school with the knowledge that if they needed life-saving medication, no one at the school would provide it."

In a recent agreement to settle the discrimination complaints, the 28,000-student school district agreed to train more than 500 staff members and all bus drivers to administer the injections. The district hasn't estimated the cost of the program, but training consumed more than 2000 hours of paid staff time.

The agreement exceeded state requirements by mandating that the district will develop and implement an individualized healthcare plan for diabetic students. In addition, trained staff members will accompany diabetic students on field trips and extra curricular activities.

"The effort to change the school district's policy pretty much consumed all of our time," Jackson said. "The agreement brought my family great peace of mind, and we all feel a lot safer now."

Devin Jackson's story is not unique. There are 123,000 Americans with diabetes under the age of 20, according to the National Institutes of Health. Each year more than half of the 2,500 complaints lodged with OCR involve disputes concerning the rights of 5.8 million children with disabilities in public schools, including diabetics.

Complaints cover a broad range of incidents, from children not given permission to prick their fingers for in-classroom glucose monitoring to kids who aren't allowed to make up work for diabetes-related absences. They also reveal that school district policies differ throughout the country.

"As we gain a greater understanding of what constitutes good care for diabetics, it has become clear that students need access to certain tools and accommodations during the school day," says Ann Albright, chair of the Advocacy Committee of the ADA. "Children can't put diabetes on hold when they go to school."

Discrimination issues are a hot topic on the ADA's website, where nearly 500 people have responded to an online poll on the subject. Complaints range from things as minor as the lack of diet sodas in school vending machines to the frustration of dealing with school officials who don't know how to handle diabetic children. One mother was told her 5-year-old son must transfer to a school 30 minutes away to receive insulin injections and glucose monitoring. Another wrote that she discovered her daughter was drinking sugary fruit juice because the teacher would not allow diet soda in the classroom during a snack break.

"My daughter was too embarrassed to tell me, knowing that I would talk to the teacher," the parent wrote. "She thought the teacher would treat her badly the rest of the year if I talked to her."

Children with diabetes are protected from discrimination by the Individuals with Disabilities Education Act, which entitles children with disabilities free public education, Section 504 of the Vocational Rehabilitation Act of 1973, which prohibits discrimination against the disabled in all federally funded program and the Americans with Disabilities Act.

In response to growing complaints and concerns from parents, the ADA has published "Care of Children with Diabetes in the School and Day Care Setting." ADA Vice President Michael Mawby said the guide "brings together current medical practices and legal requirements. Our goal is for parents and school districts across the country to use it to answer questions and settle disputes."

The issue has been garnering nationwide attention. In his January 6th State of the State address, New York Governor George Pataki announced his administration would "launch initiatives in our schools aimed at giving children with diabetes the support they need, while giving parents the peace of mind they deserve."

But, parents like Sandi Pope know that there is still a lot of room for improvement.

"Fourteen months ago, at the very tender ages of 8 and 9, my children learned what it felt like to be discriminated against at the hands of their school system," Pope said. "We learned how to spell discrimination. We learned the meaning of it. And, most importantly, we learned how to fight it and win."

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