Our daughter Nora was diagnosed with type 1 diabetes when she was two years old. While her diagnosis was initially a shock, over time, life with diabetes has become second nature to us and caring for Nora has made our family stronger. Nora is now five years old and will be entering kindergarten next year. Our neighborhood school (where our older son attends) does not have a full-time nurse, but we weren’t overly concerned about this since we knew we had the right to find a staff person to handle Nora’s care. We’d had positive experiences with training staff to care for her in preschool, so we were hopeful that the transition into our neighborhood school for kindergarten would be just as positive.
We initially contacted one of the kindergarten teachers and asked if she’d consider being trained to handle Nora’s care. She was very supportive, and happily agreed. A few weeks later, however, she approached us and said that she’d spoken with the school nurse supervisor, who had strongly advised her not to assume this role. The nurse gave her several reasons why it would be a difficult and dangerous task for her to undertake; therefore, she no longer felt comfortable accepting the responsibility.
Following this event, we had a meeting to discuss our options with the nurse supervisor and the administration of our school. The nurse spoke at length about why our school was not equipped to take care of Nora without a full-time nurse. The school also ruled out teachers, administration, office staff and aids as options for training staff to provide care—if you’re thinking there’s no one left to ask, you’re right. They highly recommended that we research the two closest schools to us that do have full-time nurses. The nurse called this a “medical necessity,” saying that if we opted to transfer schools, she would help ensure that our two other children could transfer to the new school as well. We left the meeting feeling discouraged, but were willing to check out the other schools.
Eventually we made the decision that one of those schools really was the best option for our kids. It was close, it had full-time nursing, an excellent reputation and there were several other children with diabetes attending whose families would be a great community for us. After informing the district nurse of our choice, we were told the nurse at our desired school had a “full caseload” of students with medical needs, so they were denying our family’s application on the basis of Nora’s diabetes. The “good news” was that there was room for all three of our kids to go to another school with a full-time nurse (a school we had not chosen).
At this point we began to feel pushed around, even manipulated by the school district. We contacted the American Diabetes Association for help and we made an appointment with two officials at the district level to discuss our experience thus far. An attorney from the ADA provided us with relevant legal information and guided us to the appropriate resources, which helped us realize that the school district hadn’t complied with Section 504 and the Americans with Disabilities Act on more than one count. Denying a student admission based solely on their disability is a prime example.
Thanks to the ADA’s advice and our thorough research, we felt equipped to argue our case when we met with the school district. When we made it clear that we believed our school of choice was best for Nora and that the law was on our side, the district officials listened and there was minimal pushback. They apologized for our experience, and by the end of the day they had reserved spots for all three of our kids at the school we had chosen.
When we first walked into our neighborhood school to register Nora for kindergarten, we weren’t expecting (nor did we want) a fight. As a mother of a child with a “disability,” it is not fun to have to fight for my child to have basic rights: to be welcomed and included at school, to learn in safety, to go to school alongside her friends and siblings, to just be a kid. While we may not want to have to fight for our kids, what I learned through this experience is that the battle is worth fighting. And while we shouldn’t have to fight, I learned that we can. We don’t have to be transferred all over the city, or take everything we are told by school and district officials at face value. If something doesn’t feel right, it is worth seeking counsel from the ADA and other advocates. The fight for your child is always worth it, and I’m so grateful that I chose to fight for mine.
–Hannah and Jordan Bemis
The American Diabetes Association leads the effort to prevent and eliminate discrimination against people with diabetes at school, at work and in other parts of daily life. If you need help, call 1-800-DIABETES or visit diabetes.org/gethelp.
Through our nationwide Safe at School® program, the Association is dedicated to making sure that all children with diabetes are medically safe at school and have the same educational opportunities as their peers. Visit our Safe at School website for information and resources.
