New Laws Protect Kids With Diabetes at School
Tracy Milligan didn't want her 4-year-old son, Jared, to be forced into a "diabetes school." Jared had been diagnosed with type 1 almost a year before he was due to start kindergarten, and because of his age, it was clear he would need help at school caring for his diabetes. In Jacksonville, Fla., where the Milligans live, this would have meant Jared couldn't attend his neighborhood school but would have to catch a bus to one designated for students with diabetes, where a full-time nurse was on staff. In other words, Jared wasn't welcome in 98 of the Duval County school district's 103 elementary schools. In the Milligans' case, the only way around the transfer was for a parent to come to Jared's elementary school to give him insulin shots. So that's what his mom did.
For more information about diabetes care at school or to request help from a legal advocate, call ADA's Center for Information and Community Support at 1-800-DIABETES (1-800-342-2383) or
go to diabetes.org/safeatschool.
Every day for 2 1/2 years, Milligan, an administrator at a nearby research center, drove from her office to Chets Creek Elementary to give Jared his insulin before lunch and when his blood glucose levels ran high. She missed important conferences, meetings, and business trips. If she couldn't make it, her husband had to take a vacation day from work to fill in. Milligan didn't want the school policy to push Jared into trying to manage his own diabetes before he was ready, but the choice wasn't easy. "As much as I wanted to keep him in the school and as important as that was to us, it was a great challenge, and emotionally and physically a very difficult time for us," she says.
Families in North Carolina also won a legal victory this year. The protections of the 2002 Care for School Children With Diabetes law were extended to include charter schools, and schools were required to report on their progress to the State Board of Education. You can read more about the 2002 law in the June 2009 Diabetes Forecast article "Leading the Way." More information about state laws regarding diabetes care at school is available at diabetes.org/state-laws.
Jared is 8 now and can do most of his own routine care, such as administering insulin. But other kids like him will benefit from legislation that American Diabetes Association advocates like his mom worked hard to enact this year. On July 1, Florida Gov. Charlie Crist signed into law a bill that ends segregation of children with diabetes by forbidding districts from assigning kids like Jared to a particular school just because they have diabetes. The new law also enables students who are capable of doing so to carry diabetes supplies and use them on their own, and allows trained school staff such as teachers, administrators, and others to provide diabetes care.
Diabetes is nothing new, of course, so why are laws on school diabetes care now needed in some states? "Thirty years ago, we didn't know we needed to manage diabetes 24 hours a day," says Larry Deeb, MD, a pediatric endocrinologist, former ADA president for medicine and science, and currently a cochair of ADA's Safe at School Working Group. "We didn't have the means to manage diabetes 24 hours a day, so we didn't."
The evolution of new technologies and the proven benefits of tight blood glucose control mean that schools must be well prepared to provide care to keep children with diabetes safe in the short term and avoid the devastating complications of diabetes down the road. ADA volunteers and staff have led the fight for adequate diabetes care in school. ADA's Safe at School campaign provides families with the tools they need to educate school personnel about diabetes, negotiate resolutions to problems, and, when necessary, take legal action or even change the laws.
Paula Jameson, MSN, ARNP, CDE, a diabetes educator and nurse practitioner at Nemours Children's Clinic in Orlando and advocacy chair for ADA in central Florida, says she has already seen improvements in how Florida schools treat students with diabetes. Thanks to the work of her clinic and ADA, the Orange County (Fla.) school district wrote diabetes management plans for each student, including strategies for training volunteer staff in how to perform tasks like administering insulin. "Nurses can't be everywhere at once, and I truly believe that [these changes] have made all the difference in the world in the quality of care these kids get at school," says Jameson.
Children with diabetes in New Jersey are also safer at school thanks to the work of ADA advocates. A new law that took effect in January requires schools to create individualized care plans for every student with diabetes and provides for the education of school employees in diabetes care, including training staff members who volunteer to give a glucagon shot in the event of severely low blood glucose. It also allows kids who are able to do so to self-manage their diabetes.
That last provision was especially important to Kenny Rodenheiser, who testified in favor of the legislation. Rodenheiser, now 20 and a college junior, was a seventh grader in Hammonton, N.J., when he was diagnosed with type 1 diabetes. For several months in high school, he wasn't allowed to test his blood glucose in the classroom. Rodenheiser says students in that situation have to make a tough choice: either leave class to go to the nurse's office and risk missing an important lesson, or skip testing their blood glucose, to avoid falling behind on their studies. "It's a lose-lose situation," he says, noting that students with diabetes at some schools were never allowed to test in class.
|Tracy and Jared Milligan|
Michelle Laranko, RN, CDE, a pediatric diabetes educator at Children's Regional Hospital in Camden, N.J., also backed the diabetes care bill. After she was diagnosed with type 1 at age 12, Laranko recalls a math teacher repeatedly embarrassing her in front of the whole class for having snacks to keep her blood glucose steady. To avoid being ridiculed, Laranko soon skipped snacking. Under the new law, training for care of students with diabetes must be given to any teachers, coaches, bus drivers, and other school personnel who volunteer to receive it. Laranko testified at the legislature in favor of a provision that allows school employees to administer glucagon should a student lose consciousness. She explained the importance of an emergency glucagon shot and demonstrated the four-step process. She says legislators were surprised by how simple it was.
Anthony Cannon, MD, president of the Philadelphia-area ADA Community Leadership Board, says that schools want to partner with parents to provide the best possible care for students and that diabetes education is vital in making that happen. "Teachers are interested in learning more and doing more for their students," he says. Cannon adds that the New Jersey law is helping children achieve the best possible management of their diabetes: "It allows youth the freedom to be as engaged with their chronic disease at school as they would be in their homes."
A Fight in California
In a setback for Safe at School efforts, the California Court of Appeal ruled in June that unlicensed school staff may not volunteer to give insulin shots to students with diabetes. The ruling upheld a lower court decision and struck down part of a settlement agreement between ADA and the California Department of Education that had allowed trained school staff to administer insulin when a school nurse was not available.
"A child with diabetes needs access to insulin at all times," says Linda Siminerio, RN, PhD, CDE, a past president of ADA. But a school nurse is not always available to administer it, especially in California, where the ratio of students to nurses is 2,700 to 1. "When there's no one there to provide care, children run the risk of becoming ill. They may be forced to go on subpar medication regimens, or get pushed to independently manage their diabetes way too early." It may also mean kids with diabetes are unable to attend field trips and participate in after-school activities, as they have a right to do.
The American Nurses Association and the California Nurses Association, two of the groups that filed the original lawsuit against the California Department of Education, argue that insulin is dangerous in the wrong dosage and that only school nurses have the proper training to give shots. But ADA and other diabetes advocates disagree. Siminerio says: "We know school staff can be trained to safely administer insulin—it's already being done around the country."