I remember when I first heard about 504 plans. I couldn’t figure out why they couldn’t just have them all pre-printed and rubber-stamped. You could simply go to a website, print out a “504 for Diabetes,” and you’d be set. Oh, how little I understood them back then!
It didn’t take me long to recognize that this cannot be done because every school, child, and situation is unique and needs different accommodations to function well. Thankfully, there are good lists that you can use to help craft your 504 plan, but there is no substitute for working with the school to create just the right plan for your child.
Over the years we’ve had many 504 meetings. James has never had a year in school where we didn’t meet with the staff prior to the school year to try to figure out the best path forward. (In some ways, I’ve considered this a tremendous advantage — James and his needs are known to the teachers and administrators from the beginning.) Some years the 504 plan changed very little, and some years there were pretty drastic changes.
One big change was the jump from middle school to high school. James attended a K-8 school with a fantastic school nurse who knew him for many years. She followed his CGM (continuous glucose monitor) readings on a school device and took such great care of him that I honestly never worried. But when he went off to high school, we realized that he could function without that level of care. In fact, during the 504 meeting, we determined that aside from intervening on his behalf in the case of a severe low blood sugar, James would function pretty much independently!
This didn’t mean that he didn’t need a 504 plan.
He still needed permission to use the health office whenever he needed more low supplies, to use the restroom whenever he needed to, and to use his cell phone (to text me or to check blood sugar trends) during class. We also discovered during the year that he would need a little bit of oversight while on a field trip, and we got special permission to let him opt out of the swimming unit at school (because it was long, and we lose the remote oversight of his blood sugar while he’s in the water). These were changes that we made during the year. That’s another key to 504 plans — they need to be flexible! While we always meet at the beginning of each school year, we sometimes meet during the year too. A 504 plan should be able to adapt to best serve the child and the school.
This year was a little different. I got the notice that we needed to review his 504 plan for the upcoming year, but of course, with proposed remote learning to start and a later return (possibly) to hybrid learning, I had no idea what kinds of challenges we might run into. I decided to essentially rubber-stamp last year’s plan and agree that as circumstances changed, we’d revisit it. This gave the school the proper paperwork in place for James and gave us a little time to feel things out.
It turns out, remote learning has served us pretty well. As you can imagine, most of the potential issues with blood sugar control in a high schooler who is learning at home are pretty manageable. I’m literally in the other room. He usually sits just a few feet from the fridge and dining room in case he needs access to low supplies, and his phone can be plugged into the wall to make sure it is charged.
As we consider a return to the classroom, we wonder what kinds of changes we’ll need to make to his 504 plan. Brainstorming with some of my friends (who are also parents of kids with diabetes), one of the considerations we thought about was to make sure that there is a germ-free area for diabetes-related tasks. Kids with type 1 (especially younger kids!) often test and treat in the nurse’s office. If this same spot is used to accommodate kids with suspected COVID-19 exposure, an alternate location might be better. But we figured we’d have to check with our individual schools.
There must be other factors that figure into what a 504 plan will look like for kids with type 1 who are returning to in-person classes. But those will be so hard to see prior to experiencing a day at school. Parents and schools will need to utilize the full flexibility of the 504 plan! Not only will plans need to be flexible, but attitudes will as well: Both families and school staff will need to accept the idea that new challenges might arise that necessitate further meetings and more cooperation.
In reality, printable 504 plans for kids are antithetical to the process. Plans evolve, change, and adapt, allowing for safe schooling for kids in even the most unusual and extreme circumstances… and that’s the beauty of them!
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. Jen and Kim are real moms of kids with type 1 diabetes and have been compensated for their contributions to this site.