Like most parents of children with type 1 diabetes, I will never forget that devastating October day when my beautiful daughter, Devin, was diagnosed. It was the day before my son Dylan’s third birthday. We were busy preparing for his party as we scooted to the pediatrician for both kids’ checkups. Little did I know that our world was about to be turned upside down. Instead of spending our weekend entertaining a room full of icing-faced toddlers and their parents, we spent our time chasing Devin down the halls of Children’s Hospital in Philadelphia. Pricking her fingers, giving injections of diluted insulin, administering medication in the event of a severe low . . . we had to learn all of that and more.

Fast-forward to the summer of 1998, when my husband’s job led our family to relocate from Northern California to the historic town of Leesburg, Virginia — about forty miles west of Washington, D.C. The kids were entering a brand-new elementary school, and we knew adjustments would need to be made. With my daughter’s physician’s order in hand, I scheduled an appointment with the school principal, who assured me that Devin’s needs would be met. Even though I had worked as a litigation paralegal at a major Philadelphia law firm for many years, I had never heard of Section 504 of the Rehabilitation Act of 1973 and had no idea that diabetes was considered a disability under the Americans with Disabilities Act. How would I know that? I had never needed to know about Section 504 because Devin’s previous school had provided such excellent care.

devin-how-i-fought-for-my-daughterA Surprise Letter

The principal at Devin’s new school gave me the comfort in that first meeting that Devin’s lows would be recognized and promptly treated and that she would have all the care she needed. And I believed her. So imagine my surprise when I received a letter from the school district superintendent later that summer informing us that only a school nurse would be authorized to give medication in the event that Devin experienced severe hypoglycemia. Sounds reasonable, right? There was just one problem: The school nurse was only on-site Wednesday mornings. I suppose that if Devin needed medication on a Wednesday morning, then she’d be okay. But what about the rest of the week? What about coverage during field trips and extracurricular activities? We couldn’t exactly plan Devin’s hypoglycemia around the nurse’s schedule! What made the situation even more desperate was the fact that Devin had been exhibiting a pattern of running low and had recently experienced a couple of severe lows that required medication. The fact that the school was unwilling to train anyone else to help care for Devin was unacceptable to me.

Although I knew very little about civil rights laws at the time, I instinctively knew that this was just flat-out wrong. I sought out other parents of children with diabetes throughout the state, and we worked tirelessly with our state senator (who happened to have a niece with type 1 diabetes) to educate policy makers and state legislators about a school’s legal obligations to meet the needs of students with diabetes and how a school’s failure to meet these needs could result in serious medical consequences for students. The American Diabetes Association also provided guidance and expertise, and showed a willingness to support us throughout the legislative process. Together we joined forces with our state senator to pass the first comprehensive state school diabetes care law in the country in 1999. The Virginia law requires that every school train a minimum of two staff members (who need not be school nurses) to give insulin and medication for severe low blood sugar.

In addition, my good friend Sandi Pope — the mother of two children with type 1 diabetes — and I achieved a favorable outcome in a complaint we filed with the United States Department of Education/Office for Civil Rights (OCR). The OCR determination really sealed the deal and made it crystal clear that students with diabetes have the right to receive appropriate care at school under Section 504 and the Americans with Disabilities Act. Collectively, the Virginia law and the OCR decision paved the way for children with diabetes throughout the country to assert their rights in order to receive needed care from their school.

Counting on Our CommunityCrystalDevinWDW

Devin and other children with diabetes at her school received the full benefit of the Virginia effort the following school year, when she began fourth grade. While the law and OCR settlement required two people to be trained at each school, twenty-five staff members at our school stepped up to the plate to be trained that first year alone. The teachers, guidance counselor, principals, school secretaries, coaches, and food-service workers all cared enough about Devin and other kids with diabetes to want to provide them with the safest environment possible. In addition, our school district trained every bus driver and athletic director on how to recognize and treat hypoglycemia. I was impressed at how willing our new community was to help Devin and other children with diabetes.

Out of this experience, the American Diabetes Association’s Government Affairs & Advocacy (GA&A) division offered me a job where I could not only use my paralegal skills, but a job in which my passion could make a difference. I am grateful to have been on the Association’s legal advocacy staff since 1999, where I have had the good fortune of working with committed colleagues and volunteers to achieve policy change in other states and school districts. Since joining the American Diabetes Association, our GA&A team has led the charge to pass school diabetes care legislation in 25 states, and has achieved regulatory reform in several other states, enabling the training of school staff members to give insulin and medicine for the treatment of severe low blood sugar. I am proud to be a part of an organization that devotes a significant part of its resources and people-power to children with diabetes and their families.

DevingradMay172012-001Devin graduated from George Mason University in May and plans to pursue a career in diabetes healthcare. Her academic success is credited to a number of factors: great teachers, good study habits, supportive family and friends — but also to policy decision makers who opted to do the right thing for kids with diabetes back in 1999. My family is grateful that we were in the right place at the right time to meet and work with all of the committed parents and diabetes advocates in Virginia, and that we were given this opportunity to make a difference. While the American Diabetes Association and advocates like us continue our fight to find a cure for diabetes, we are comforted with the knowledge that our important work will help keep kids with diabetes healthy — especially during the long hours kids spend at school — until a cure is found.

I have learned never, ever give up the fight when you know you are right.

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.