One Voice To Best Serve Our Students
You can always accomplish more working together than alone.
We have 530 students with type 1 diabetes in our school district. Yes, that’s a lot. But we have one of those big Texas districts. A year ago, our district couldn’t tell us the number of students with type 1 diabetes (T1D) enrolled. What changed? Well, our families changed the way we approached our district, and our advocacy work in turn changed our district.
In the spring of 2016, parents of T1D students in the Cy Fair Independent School District in Cypress, Texas decided to stop working alone and start working together. Our hope was to become a single, unified voice on behalf of our kids. I joined with two other parents of type 1 students, Carolyn Boardman and Robin Hall, to form Cy Fair Type One Connection, a school advocacy and support group for students with type 1 diabetes. Amy Josefy, Courtney Livingston and Angela Vinson rounded out a diverse group of parents with more than 250,000 hours in type 1 diabetes care.
First we started writing. We compiled all the stories we’d heard and all the ongoing issues our T1D students faced in our schools. Next we identified “gaps in care and areas of concern.” Finally, we categorized our issues by the number of occurrences, the grade level at which they happened and the degree of urgency. While our approach was hardly scientific, it was clarifying and eye-opening.
We have a great state law in Texas that mandates principals identify personnel to assist with caring for students with diabetes during the regular school day or while participating in school activities. And we knew our district had good intentions for the care of our T1D students. They supported them with 504 plans, registered nurses and unlicensed diabetes care assistants (UDCAs). But sometimes good intentions aren’t enough.
Our district was so large—it serves 116,000 students and has 14,000 employees —that information wasn’t making it to the staff members who actually cared for and managed our kids. Furthermore we had concerns in several places: Health Services, Special Education, Fine Arts, Counseling Services and Athletics.
It wasn’t easy for our district to hear that we perceived “gaps” in their care during our initial meetings. But after we had the district’s support and attention, we started with Student Health Services. Some solutions were easy. Working with the district, we identified a major gap in care during extracurricular activities. The district was quick to respond here, and they initiated additional diabetes-awareness training for their staff of 400 coaches and trainers.
Diabetes care in schools involves the school, doctors and parents—it is a circle of care around our kids. And we have to be aware and adaptable. The recent FDA continuous glucose monitor (CGM) approval is fantastic for our kids, for instance, but it also raises many new issues in schools. Because of our advocacy work, our district has reacted quickly. Recognizing the FDA approval would require additional training for staff in CGM systems, the district reached out to their diabetes-training provider to update their technology section.
When we started our advocacy work, our district administrators couldn’t tell us how many T1D students they had because they only measured “diabetes” as a single entity, lumping students with type 1 and type 2 diabetes together. Now our district identifies the type of diabetes on a student’s file. Now we know that there are precisely 530 students with type 1 diabetes in our district. Now our T1D kids are recognized as being “insulin dependent” by school staff.
For the first time, our district acknowledged type 1 diabetes during Diabetes Awareness Month. We now offer T1D families in the district educational events to increase awareness about school-related issues like 504 plans, ACT/SAT testing, and extracurricular activities. And recently we hosted a “Preparing for Kindergarten” seminar in conjunction with the district, where, for the first time, district staff presented information directly to parents of students with type 1 diabetes to assist with the transition to public school.
This is a process. Our goals will take time. Updating policies, planning and training is long-range work. We keep our focus on how we can facilitate progress. We know we have more to do. And yes, we still have issues that arise on occasion, but it helps that our T1D community has a voice now. One Voice. If a parent needs us to speak up for them, we do. And the best part is that when our school district hears about a problem, they try to address it quickly.
Remember how a year ago we didn’t know how many students with type 1 diabetes were enrolled in our schools? Now we believe our school district can shine in their role as caretakers for T1D students, and we hope that our efforts as advocates will set an example for other community groups that might not have the resources or know where to start.
Help you T1D child give a school presentation on what type 1 diabetes is.