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 for years, Mary Schuh (pronounced "shoe") of Beaver Creek, Oregon, entrusted 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. After meeting with her parents, her teacher found out exactly how many carbohydrates were in a cupcake, and everyone from the principal to the lunch lady knew the signs of hypoglycemia, or low blood sugar. The school nurse and a secretary were trained to give shots of glucagon, a drug that could save Sarah's life if she ever slipped into a diabetic coma. Even the first-graders did their part; Sarah always had a designated "buddy" watching out for her.
"Everyone at the school was 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 unless they are administered by medical personnel. 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.
Concerned parents in Loudoun County, Virginia, were among the first to put the law to work. By filing a suit with the Department of Education's Office of Civil Rights more than a decade ago, 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.
Recently, several states have also changed their laws regarding students with diabetes. Florida passed law in 2010 forbid districts from assigning kids with diabetes to a particular school just because they have the disease and need special care. The new law also allows students to carry diabetes supplies and use them on their own (if they are able to), and allows trained school staff such as teachers, administrators, and others to provide diabetes care. New Jersey also passed a law permitting students with diabetes to manage their disease at school and provided training for volunteer school staff members in how to give a glucagon shot and other diabetes care basics.
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.
American Diabetes Association. Legal Advocacy Program, 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.
Diabetes Care Tasks at School: What Key Personnel Need to Know. American Diabetes Association, 2014. http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/school-staff-trainings/diabetes-care-tasks.html
Interview with Mary Schuh, Beaver Creek, Oregon
Interview with Connie Miller, Dallas, Texas
New Laws Protect Kids With Diabetes at School, Diabetes Forecast, Nov. 28, 2010
Pediatric Diabetes, Volume 8, Issue 2, April 2007
Protect your child. American Diabetes Association.
Getting loud on schools. American Diabetes Association.
American Diabetes Association. Civil Rights Agreement Reached In Loudon County, Virginia. http://www.diabetes.org/advocacy-and-legalresources/discrimination/school/loudoun.jsp