Your Rights, One Voice: Sarah’s Story
Music, science, art—10-year-old Sarah Giacoio of West Chester, Pennsylvania, likes and does it all. But one day, when she signed up to join her school’s Science Explorers club, her mother, Heather, was told the school would not provide a nurse during this afternoon activity.
You see, Sarah has been living with type 1 diabetes since she was 5 years old. Although she manages the disease well and does not let it slow her down, her mother recognizes the importance of having a school nurse around at all times. During the school day, on the bus and at other extracurricular activities such as chorus, the nurse helps Sarah calculate insulin dosages, monitor her blood glucose and treat hyperglycemia and hypoglycemia (episodes of high and low blood glucose). Why was this after-school activity any different?
Heather reached out to the school principal and the county’s support services staff, but they insisted that Science Explorers did not qualify as a “school-sponsored program” since it is not facilitated by school staff and outside students are allowed to attend. They claimed they were not responsible for providing medical care at the club’s weekly activities, despite Sarah’s existing Individualized Education Program (IEP). Heather was told she would need to accompany her daughter to the club each week.
Frustrated, Heather contacted the American Diabetes Association® for help. One of our legal advocate staff attorneys assisted Heather in defining and evaluating the factors that qualify an extracurricular activity as “school-sponsored.” The legal advocate helped Heather make the argument the Science Explorers club was, in fact, school-sponsored because it is held at and publicized by the school, and registration is open to its students. As a result, all medical protections that Sarah receives during the school day need to be offered at Science Explorers.
The legal advocate sent Heather sample language to provide the school, as well as general information regarding the rights of students with diabetes and a fact sheet about field trips and extracurricular activities. Heather called the school with this information, and the administrators agreed to have a nurse available for Sarah at Science Explorers.
All was well until a few months later when the school’s staff changed and they again refused to provide a nurse—this time for an extracurricular art club. Once again, Heather reached out to the American Diabetes Association, and we suggested that her IEP be updated to include an accommodation for extracurricular activities. Verbal confirmation was not enough to guarantee Sarah’s safety. With support from the legal advocate, Heather successfully revised Sarah’s IEP to state that a nurse would accompany her to ALL extracurricular activities sponsored by the school.
Now Sarah can participate in the same extracurricular activities as her classmates without having to worry about her safety. Although Heather is relieved for her daughter, she says, “I just wish that we parents did not have to go through this.”
Today Heather advocates for our Safe at School® program to ensure that other children with diabetes receive the resources, support and care they need.
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 (800-342-2383) 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.
Give the gift of fairness—donate now to help people with diabetes facing discrimination, just like Sarah.