Our son Jared was diagnosed with type 1 diabetes when he was four years old, just months before he entered kindergarten. We live in Duval County, Fla., and shortly after his diagnosis, I learned that our county’s school policy was to hire a part-time nurse to be at the school, primarily during lunch, to administer insulin to children with diabetes. This sounded acceptable.
However, right before the start of the school year, Duval County suddenly changed its policy. I was told that for a number of reasons, the district would no longer hire part-time nurses for each school, and a new plan was in place to hire six full-time nurses to serve certain schools across our county. We’re a very large county with over 100 elementary schools. Our neighborhood school was not chosen as a school to have one of these nurses. We were told Jared could not go to his neighborhood school unless a parent came every time he needed insulin. If a parent couldn’t be constantly on call, then Jared — like every other child with diabetes who couldn’t yet self manage his disease — would be bused to one of the so-called “diabetes schools” in the district.
I immediately knew this didn’t sound right or fair. I had become involved with the American Diabetes Association almost as soon as my son was diagnosed and decided to contact them to let them know what was going on. They confirmed my feelings that Jared’s rights were not being protected. From there, I contacted the school district administrator in charge of 504 Plans and expressed my concerns. I attempted to work with the district to come up with another plan so Jared could stay in school without requiring me to leave work every day to administer insulin. I worked with the Association to send in all kinds of materials to educate the district on different policies that could be put in place to meet the needs of children with diabetes.
We did this for several months, but in the meantime, I went to his school every day to administer insulin because I strongly felt that my son deserved to go to his own neighborhood school. His two older brothers went to the school, we know the principal, and other kids and some of the teachers go to our church. This disease already challenges him enough. I didn’t want it to take his school away as well. It’s very cruel to tell a child, “We know you’ve got this life-long, life-altering disease, but we also would like to take you away from your brothers and your neighborhood and put you in another school.” It still makes me cry to think about it.
I was very fortunate that my boss allowed me to leave work and take care of my son whenever needed. Not everyone in our same situation had this luxury, and some families moved to a different county because of the policy or decided to home-school their children with diabetes.
When it became clear that our efforts to educate the school district weren’t working, with the help of the Association, I filed a complaint with OCR [the Office for Civil Rights, a division of the U.S. Department of Education] toward the end of Jared’s kindergarten year. It took another year for OCR to come back with a decision. Unfortunately, they ruled in favor of the district’s “diabetes school” policies, as they outlined in a letter to me.
Again with the help of the American Diabetes Association, I requested an appeal based on some issues with their findings. At the same time, I was put in touch with Crystal Jackson, who is the director of the Association’s Safe at School program. This program advocates for state laws and policies that protect children with diabetes. It was decided that Florida needed such laws in order to correct the issues that we were facing and prevent them from happening in other counties.
For the next year, we worked with state legislators to get a “Safe at School” bill written. At the diabetes camp Jared attends every summer, the kids wrote letters to the state legislators. My family went to Tallahassee and testified before the legislature. Finally, on July 1, 2010, the bill was passed and went into effect, almost three years after Jared started school.
You would think that would be the end, but our fight was still not over. Unfortunately, even with the new state law in place, our county school district chose to keep the “diabetes schools” policy in place. In the summer of 2012, OCR informed the district that it was reopening the investigation of my original complaint. Shortly afterward, the district changed its policy so that staff members at any school could be trained to administer insulin, finally giving kids with diabetes the fair and viable option of staying in their neighborhood schools. This policy was officially adopted in January 2013.
With everything we had to go through to get to this point, I couldn’t be prouder of our son. Jared went to Tallahassee with us when we testified in front of the legislature, and he’s been aware of every step we’ve taken to make sure his rights are protected. Most of all, he also knows this fight was not just about him, but every child with diabetes growing up in the state of Florida.
Click here to learn more about the American Diabetes Association’s Safe at School initiative and how you can help keep your child with diabetes medically safe, or call 1-800-DIABETES for information and help.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.