Report Reveals How Schools Fall Short in Helping Kids With Type 1 Diabetes

A report in The New York Times reveals widespread shortcomings in how schools address the needs of children with type 1 diabetes (T1D), outlining tales of children being shut out of their local school, or denied participation in sports or field trips. In case after case, parents’ jobs were put in jeopardy for lack of a nurse or other staff member willing to assist a child in case of an emergency.

According to The Times, the rise in episodes stems from both an increase in cases of T1D and budget cuts, which mean districts no longer place a nurse in every school. But such practices are both illegal and unnecessary, since guidelines from the American Diabetes Association (ADA) call for personnel other than nurses to be trained to help children, and for states to pass laws holding those who act in good faith to be held harmless if something goes wrong.

A study presented at the ADA Scientific Sessions in 2013 in Chicago found that at that time, only half the states had passed laws allowing personnel other than school nurses to be trained to assist T1D students with insulin injections or glucagon. If a school nurse is not available, typically the only other person allowed to assist the child is a parent. If the child is old enough, he or she can handle injections at school.

According to the report in The Times, ignorance of federal laws that require schools to accommodate a student’s disability have led to all kinds of fallout for students: parents of Oregon twins, both physicians, took turns spending entire days at their sons’ kindergarten in case something went awry until they hired a nanny; they finally moved to another state.

A 5-year-old Houston, Texas, girl was eventually home-schooled after her mother, a geophysicist, was leaving her office every day at lunch to inject her daughter with insulin. Realizing her daughter was in danger if something went wrong, the mother eventually pulled her daughter out of school.

The same federal laws that protect children with developmental disabilities, Section 504 of the Rehabilitation Act and the Americans with Disabilities Act, apply to children with T1D. But schools are ignoring the law and parents often don’t know they have rights, both to classroom access and to sports and other activities. The Times reports that the Department of Education has handled at least 60 complaints over the past 4 years.

If there was a ground zero for bad behavior, it appears to be Alabama. One mother fought back after years of seeing her son separated his siblings and peers because the school district demanded he be shipped away from his neighborhood school to one with a nurse. To make matters worse, the district would not provide a bus, and starting in the sixth grade the mother had to leave her job every day at 2:30 p.m. to drive him home. His mother drew the line when the district refused to let him attend his local high school. The district threatened the mother with criminal charges, so she called the Justice Department. Not only did she win, but her case led to the investigation of 3 other Alabama districts and passage of a state law barring discrimination of children with diabetes.

All this could be avoided with better training of school personnel, which is the mission of ADA’s Safe at School Campaign. The study presented at the 2013 Scientific Sessions found that parents were just as comfortable having a well-trained staff member work with their child as a nurse. In fact, having club sponsors and coaches trained in diabetes care is essential for children to enjoy the full school experience, because nurses are typically not around for these after-school activities.

It’s an important message to get out because the number of children with T1D is increasing, to 167,000 according to the CDC.