Question

My son, who is four years old and has type 1 diabetes, has just started prekindergarten. We’ve had some issues with the school nurse. Because she is responsible for two different schools, she cannot be at our son’s school all day, and therefore cannot provide adequate care. What are our rights regarding medical care at school? We’ve received different answers from the school district and our son’s healthcare team.

Answer

This is one of the most common questions for parents of children with type 1 diabetes (T1D) who are just starting school. It is indeed emotional—even scary—when you send your child off to school for the first time. There is so much you want them to know, and you feel overly protective. Let me assure you that your son can have a great school experience. It all starts with having a seamless care plan in place to help ensure his safety and ability to participate fully in the school day.

I understand your concerns. I have a 13-year-old granddaughter who was diagnosed with T1D when she was four. I have been very involved in all facets of my granddaughter’s journey, including the creation of school care plans. This year, she moved on to junior high school, so again, we are working out the details of her new care plan. I also am a former school nurse, so I understand from both sides of the equation just how important it is to work with your school’s staff and faculty to create a care plan that works for everyone involved.

When my granddaughter started school eight years ago, we knew so little, and now we understand that there are numerous safety nets in place to protect kids with health issues in the school setting. Specifically, there are three federal laws that spell out a school’s responsibilities with regard to children with T1D:

• Section 504 of the Rehabilitation Act of 1973
• Americans with Disabilities Act of 1990
• Individuals with Disabilities Education Act

Perhaps most important to your question is Section 504, which gives you the right to develop what is called a “504 plan” with your child’s school. Any school that receives federal funding must comply with Section 504 or risk losing that federal funding.

What we have found over the years is that most school nurses, as well as administrators and teachers, are very eager to work with the family. The initial hesitance that many parents encounter on the part of school staff is usually due to a lack of understanding about what T1D is and how to manage it. They want to feel knowledgeable about T1D, so they need training, and they need to be able to reach a parent at any time if they have questions. Your school nurse can help you put together a comprehensive, but easy to understand, health plan for the school setting. Because she is ultimately responsible for the health of all the students in her schools, it is her responsibility to do so. The staff can then be trained to understand your son’s needs and utilize the plan. Sometimes, that’s all it takes to get people on board and enthusiastic! And the plan that you develop will serve to assist your son in his classroom, at recess, at lunch, on field trips, or wherever else his day takes him.

With regard to your specific question, it is actually very common for a school nurse to be responsible for the students of more than one school—even several schools. But there is a solution for that problem: a “Parent-Designated Adult” (PDA). The PDA is an adult—maybe a teacher, an administrator, a counselor, or a neighbor or grandparent—who is available during all school hours and is willing to be trained in all aspects of T1D management, so that there is always someone available for your son’s immediate medical needs.

PDAs are used widely around the United States. They do not have to have medical training, just training from you (the parent) to understand your son’s needs. Lots of parents train the school secretary or even the child’s teacher to be the PDA, but that person must be willing and comfortable to serve in the role.

The JDRF website has many wonderful resources for parents on these and other issues. Specifically, the School Advisory Toolkit gives comprehensive information about the rights of children with T1D and their parents, and advice about how to handle various situations that may arise during your child’s school years. To receive a copy of the School Advisory Toolkit, fill out our easy, online form.

Disclaimer:

The information in this article is offered for general educational purposes and is not intended to replace professional medical advice. You should not make any changes to the management of type 1 diabetes without first consulting your physician or other qualified medical professional.