This content originally appeared on Beyond Type 1. Republished with permission.
By Julia Sclafani
Going back to school is a whirlwind—there’s so much to be excited about starting a new grade level and reuniting with teachers and classmates. For students with diabetes, a new year can also mean time to establish a new or updated diabetes management routine for your child’s school day.
In preparation for the school year, JDRF—in collaboration with American Diabetes Association and Sansum Diabetes Research Institute—hosted a conversation with experts to discuss the ins and outs of setting your child up for success.
Here’s what you need to consider before the school year starts.
What Is a 504 Plan?
Similar to how the Americans with Disabilities Act protects people with diabetes in the workplace, section 504 of The Rehabilitation Act protects the education of children with disabilities like diabetes. This law allows children with diabetes and their families to create what are known as 504 plans, which clearly outline agreed-upon accommodations for students with disabilities at school. It will outline the actions a public school or district will take to meet the needs of a student with diabetes. This also applies to private schools that receive federal funding.
A 504 plan can cover a variety of needs and circumstances, including:
Naming staff or faculty who will be trained on checking blood sugar or administering medications
Providing educational materials for staff to recognize the signs of high or low blood sugar
Allowing a student unrestricted access to the restroom
Allowing a student to check their phone during class
Allowing a student to have food or drinks in the classroom
Allowing a student to retake a test if blood sugar levels affected their ability to perform
Allowing a student to choose a classmate to walk with them to the nurse’s office
It can and should be totally personalized to your student’s needs.
Schools are legally responsible to train school staff. Most states allow schools to train non-nursing staff on administering insulin or glucagon. You can put the specific details regarding the expected training into your 504 plan. The ADA offers 504 plan templates on its website.
The ADA strongly recommends putting all requests regarding the 504 plan in writing—including initiation of the process.
Do I Need a 504 Plan?
You might think your student doesn’t need a formal 504 plan because they have plenty of support—but there are many unpredictable circumstances that even the most prepared student can face with type 1 diabetes. A 504 plan is a must.
“Put that 504 plan in place while everything is going well. You don’t know if that wonderful school nurse is going to be there tomorrow. You don’t know if your child’s teacher, who also has a child with type 1 or type 2 diabetes, is going to be there tomorrow,” said Crystal Woodward, director of ADA’s Safe at School Campaign.
While it might seem overly cautious to put what’s already working in writing, it will help ensure continuity in the event of unexpected staffing changes—which happen! And you never know when diabetes might interfere for the very first time with an exam or project.
Even if your child has been managing their diabetes independently for years, a 504 plan will have a place throughout their academic career. If they sit for standardized tests, like the SAT or LSAT, or even a professional exam, like a bar exam, the administering body will likely ask for documentation of past accommodations, which can include 504 plans.
Staying Connected to Your Child’s App-Based Diabetes Technology
Wearable technology is a phenomenal tool for managing diabetes. So, should parents follow their child’s continuous glucose monitor (CGM) throughout the day?
“I think it’s critical if it can be done,” said Dr. Francine Kaufman, a pediatric endocrinologist and chief medical officer at Senseonics. Being able to follow your child’s blood sugars throughout the day, and communicate with them about dosing decisions during snack time and lunch can be immensely helpful. You might also be communicating with the school nurse or teacher based on the data from your child’s CGM. It offers a bit more peace of mind for everyone.
It’s also important to discuss this with your school’s 504 coordinating team to establish the level of communication and contact your family needs, and so your child has clear permissions regarding the use of their phone.
“If you are going to be texting the child, certainly establish that understanding upfront with the school and write it in the 504 plan,” Woodward said.
Woodward reminds parents to put specific protocols in any 504 plan ensuring a child can use their cellphone to communicate throughout the date—and to make sure the school nurse and other designated personnel are in the loop.
Get Up to Date on Vaccinations
Sick days can be especially hard on a person with diabetes and it can take a few more days to get back to school compared to peers without diabetes.
Because of COVID-related social distancing and distance learning, many kids haven’t been exposed to the typical breadth of germs and infections, Kaufman pointed out. It’s all the more important to be up-to-date on all vaccines.
“I am recommending what the CDC is recommending,” Kaufman said. Children should get the full COVID vaccination protocol plus any recommended boosters, depending on their age. “I know a lot of people say well, my child just had COVID. I don’t need to immunize him. That is not true.”
Experts recommend keeping children up-to-date on their vaccine and booster schedule regardless of a recent COVID infection.
“There’s no doubt that getting COVID in some for somebody with diabetes can deteriorate their glucose management and having poor glucose management can cause extra complications of COVID itself,” Kaufman said.
Facing Back-To-School Jitters
The last two school years have been far from normal for many students.
“No matter what age they are, [kids] are feeling so uncertain about the school year, don’t downplay it. Hear your children, provide empathy,” said Beth Braun, a psychologist who specializes in diabetes management and children. Also know, 504 plans allow parents to request counseling for their students.
Check-in with your child and ask how they feel about managing their diabetes during the school day. Also, be sure to include them in the design of their 504 plan—and make sure they understand their rights as a person with diabetes at school.
“Have a conversation with your child first. How do they want to handle it?” Braun said. “So do they want to be public? Don’t they? ‘If I want to do this privately, is there a place in the classroom where I can quietly do this?’ Are they going to the nurse? And if a staff member at school is following their numbers on the Dexcom, how can they quietly nudge them and say hey, you’re 200 or your blood sugar is going low?”
Also take every opportunity to teach your child “there’s nothing to be embarrassed about,” Braun emphasized. “And while it feels like at the beginning of the school year, everyone’s looking and staring. They aren’t looking and judging. They’re curious. Show other kids what warriors they have become since diagnosis.”
To get advice from other parents and caretakers or to help your student with diabetes find other kids who understand, be sure to join the Beyond Type 1 community.
Learn more about the JDRF – Beyond Type 1 Alliance here.