The Problem With 504 Plans, a Diabetic - But Not a Parent of a Diabetic - Perspective

Disclaimer: I'm going to write about a subject I have little business writing about - being the parent of a diabetic child. I avoid this subject, for the most part, because though I know the disease intimately, I don't know what it's like to have a child w/ the disease. So, humor me, ok?

So my wife's a school teacher, 6th grade to be exact. Not surprisingly, she's got a soft spot for the handful of diabetic kids and shares many of their stories with me. As you can imagine, they run the gamut from the kids who are already managing it with military-like precision to the kids that don't give a rip and everywhere in between.

Though she's periodically asked for my advice, this was the first year she suggested I meet one of the diabetic students. Her and the nurse both felt that said kid was entirely motivated to manage the disease better but wasn't getting the support he needed at home, for many reasons that extend beyond motivation: education, language, etc. I instantly agreed and soon found myself meeting with the kid at the nurse's office.

To say the kid was awesome would be an understatement, but that's not really the reason for my post. That morning, he had come to school with a blood sugar over 500. And that's when the nurse explained the 504 plan to me.

To be honest, until then I knew very little about these plans. That is to say, I knew that they said how the school district had to respond to kids with health conditions. But I guess, in my mind, I thought that the overwhelming idea was that they were in place to make a kid healthier. Instead, what I'm coming to see, is that they are just in place so parents can hold the schools accountable.

In this particular case, the kid was over 500, but guess what? The 504 plans that I have reviewed since that day talk about optimum range, but don't talk about the parents' responsibility to deliver the kid to school within that range or at least within a sniff of optimum range.

Then, I asked the nurse when she would give him insulin to bring down the 500. Unfortunately, the kid's 504 plan didn't have a clause for correction injections. Instead, he had a sliding scale to get extra insulin with his lunchtime shot, but this was 10am. All the nurse was allowed to do was to tell the kid to drink water and hope he peed himself down. I certainly wasn't shocked when I got there to discover his blood sugar had only fallen to 450. What else would it have done?

So since then, I've been reading a lot of 504 plans. Here's a bunch of them. Here's the best I've seen from the Princess and The Pump (incidentally a teacher w/ a diabetic kid).

In the end, I think they all miss a key ingredient: they're too focused on what the school has to do, and not focused enough on how the team has to work together. What are the parents' responsibilities? What should the school do if the parent delivers a kid outside of optimum range? What if a teacher or nurse feels the plan could be improved?

I suppose - being the spouse of a teacher - I'm naturally a bit unhappy with how educators' hands are tied too frequently today, but I keep coming back to the kid I met at school. See, not surprisingly, after a few hours of being 500, he spilled ketones and went home. But the more I thought about it, the reason he went home was because of the 504 plan, which didn't allow for corrections until hours later. In this scenario, the parent won, because the school did what the plan said it was supposed to. The school won, because they avoided legal action. But the kid lost, and if that isn't the point of the 504 plan, I'm not really sure what is.


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