Children with Diabetes in School: Proposed NY Legislation Aims To Improve Current Situation

Jill, a kindergartner in a Westchester County school and a patient at Columbia University’s Naomi Berrie Diabetes Center, was diagnosed with type 1 diabetes when she was 18-months old. “Because I’m a little nuts about this,” smiled her mother, “I contacted the school she would be going to, a year-and-a-half before she started—just to meet the school nurse and the principal.” By the time Jill was registered for kindergarten, her mom was quite anxious to set up a “504 medical plan,” required by law for children with special health needs. When she did not hear back from the school, she hired an advocate—a lawyer who finally facilitated the meeting a week before Jill started school. There are many flaws in Jill’s 504 plan. Explains her mom:

 “There was a nurse at school,” she said. “She had to be trained on the insulin pump and glucagon administration. They had no clue about taking care of kids with diabetes. The nurse is great now, but she takes care of 500 students. When she’s gone, there is no backup plan. Thank God nothing has happened, but sometimes I drop Jill off at school and I’m not sure she’s safe. My biggest fear is when the phone rings and it’s the school nurse. It’s Jill’s life that I’m worried about.”

The lack of school nurses is just one of the many problems that children with diabetes—especially the very young ones like Jill—encounter in schools in New York state. But new legislation, called the School Diabetes Care Bill, introduced last month by Bronx  Assemblyman, Michael Benedetto, and crafted by the American Diabetes Association (ADA), aims to solve many of the issues for school children with diabetes. 

For one thing, the bill allows for non-medical staff at schools to be trained to provide diabetes care, as long as the training is from a licensed healthcare provider—which should ease the school nurse shortage. The bill also allows older children who self-manage their diabetes to perform their own blood glucose checks, administer insulin through the pump and treat their mild hypoglycemia and hyperglycemia—without having to abide by the antiquated school policy of going to the nurse’s office.

Mary Pat Gallagher, MD, Jill’s doctor and a pediatric endocrinologist at the Berrie Center (where the nurse at Jill’s school was trained), is a supporter of the ADA-drafted legislation. 

“We are very fortunate that there have been advances in the medical management of type 1 diabetes,” said Dr. Gallagher. “While current management can decrease the risk of complications from diabetes, the more intensive regimen does present challenges for caring for type 1 diabetes in the school setting."

Continued Dr. Gallagher: “Children need to monitor their blood sugar more frequently than in the past and will often take insulin doses three or more times during the school day. In order to provide an adequate academic and social experience, it is preferable that care is delivered in the usual academic setting to limit lost class time.  It is often not possible for a single school nurse to personally administer care while attending to other children's needs. For this reason, we encourage other adults to learn to administer and/or supervise diabetes care.  Legislation confirming that this is legal and necessary will be extremely helpful in ensuring that children are able to safely care for their diabetes while attending school.”

Attend a workshop for parents on "Taking Diabetes To School" at the Naomi Berrie Diabetes Center. 

Click here to support the Berrie Center’s efforts to educate school nurses and staff in the tri-state area.