Giving a 6-year-old a shot of insulin every morning is hard. Putting her on a school bus afterwards is even harder.

Every weekday, Mary Schuh (pronounced "shoe") of Beaver Creek, Oregon, entrusts her daughter's life to the staff of Beaver Creek Elementary. Before Sarah Schuh started first grade, nobody at the school knew much about diabetes. Now her teacher knows exactly how many carbohydrates are in a cupcake, and everyone from the principal to the lunch lady knows the signs of hypoglycemia, or low blood sugar. The school nurse and a secretary have been trained to give shots of glucagon, a drug that could save Sarah's life if she ever slips into a diabetic coma. Even the first-graders are doing their part; Sarah always has a designated "buddy" watching out for her.

"Everyone at the school has been very supportive," Schuh says. That makes Sarah one of the lucky ones.

According to the American Diabetes Association, many schools and daycare centers across the country ignore the needs of children with diabetes. Some schools don't allow children to snack in class -- no matter how low their blood sugar drops. Some don't let children prick their fingers in class to test their blood sugar. Some forbid blood tests anywhere on school property.

Connie Miller, a web designer in Dallas, says such indifference put her daughter in danger. The school district said Ariana Miller couldn't use a lancet to prick her own finger; after all, children weren't allowed to carry weapons, even one with a blade 1/16th of an inch long. Unable to prick her own finger, Ariana had to visit the school nurse practically every day for testing.

"She was spending a third of her school time sitting in the nurse's office or walking back and forth from the office to the classroom," Miller says. "Sometimes, she'd have to wait 20 minutes to get checked. In that time, her blood sugar could get dangerously low."

Some schools won't even allow life-saving treatments. When Loudoun County in Virginia ruled that only registered nurses or doctors could give students glucagon shots, concerned parents filed complaints. The problem was that not all of the schools in that rural county had a registered nurse. In other words, a child who fell into a coma might have to wait several minutes or longer for paramedics to provide the shot. That could be enough time for a child to suffer brain damage -- or die.

Schools that ignore diabetes aren't just putting their students at risk. They're also breaking the law. Children with diabetes are protected under the Americans with Disabilities Act. That means every school receiving federal funds must take steps to help children manage the disease. Children must be allowed to have a snack, test their blood sugar, and take insulin whenever they need to. They also can't be turned away from a school or daycare because of their disease. (Schools do have the right to bar blood glucose testing in the classroom, but officials should allow testing in the nurse's office or another secure place.) And, whenever necessary, someone at the school must be trained to give glucagon shots.

In 1999, concerned parents in Loudoun County, Virginia put the law to work. By filing a suit with the Department of Education's Office of Civil Rights, the parents ensured that no child with diabetes would have to wait for treatment. Today, every school with a diabetic student has a trained staff member ready to give shots of insulin or glucagon.

Things have changed in Dallas, too. After a one-and-a-half year legal fight, Ariana Miller now pricks her own finger and tests her own blood sugar whenever she needs to. "My daughter's personality, self-assurance, and academic skills have all blossomed," Connie Miller says. "I truly believe it's because she got control back."

Miller hopes her case can be an inspiration to other parents. As a volunteer for Children with Diabetes (www.childrenwithdiabetes.com), she helps parents across the country become advocates for their children. Parents who think their children aren't getting the necessary support can visit the Children with Diabetes Web site for help. The American Diabetes Association (1-800-DIABETES or www.diabetes.org) is another excellent resource.

Even with the law and the school staff on her side, it hasn't been easy for Mary Schuh. She worries every day that Sarah's blood sugar might drop dangerously low without anyone noticing.

It's no wonder that her heart jumped when the nurse called during Sarah's first day of school. But the call had nothing to do with diabetes. Sarah had just fallen off the monkey bars. It was a typical first-grade injury for a typical first-grader. And that's the way the Schuhs want it.

-- Chris Woolston, M.S., is a health and medical writer with a master's degree in biology. He is a contributing editor at Consumer Health Interactive, and was the staff writer at Hippocrates, a magazine for physicians. He has also covered science issues for Time Inc. Health, WebMD, and the Chronicle of Higher Education. His reporting on occupational health earned him an award from the northern California Society of Professional Journalists.

Further Resources

Legal Advocacy Program, American Diabetes Association.

By calling the ADA at 1-800-Diabetes, you can obtain a free Employment and Education Discrimination Kit, which contains position statement and factsheets about discrimination against diabetics and what you can do about it. The packets also contain the phone number of an ADA member in your community who can counsel you about any discrimination you or your child may have experienced.

For more on schools that have created detailed guidelines designed to serve children with diabetes and other special health needs, click here.

References

First published December 13, 2000
Last updated July 22, 2008
Copyright © 2000 Consumer Health Interactive