It’s the year 2018, or so I thought. Two years ago, my granddaughter with T1D and Celiac disease was put into foster care to live with us. At the time, I was very excited by the advancements in diabetes care. We got her a Dexcom CGM to help at school with high and low blood sugars. With that monitoring device, the school nurse could intervene when her blood glucose is crashing and also see when a ketone check is needed. Soon, we would write a 504 plan and have an IHP put into place.
But earlier this month, I found myself wondering, what year is this school district living in? There have been numerous incidents at school that suggest problems with existing practices and policies. The first relates to the staff’s responsibilities. In St. Charles county, where we reside, a student’s 504 only outlines what the student is allowed to do. It does not specify what the school will do for the student. So, if the child tells the teacher that her blood sugar is affecting her during a test, that student is authorized to have time to make it up. But the school does not have a responsibility to monitor if health problems are interfering or not. If that same student does not recognize a hypoglycemic or hyperglycemic state, it’s her problem.
Another issue? Insulin dosing errors or carbohydrate miscalculations tend to elicit a “no harm, no foul” response from the school district. The rationale is, “It didn’t send her to the hospital, did it?” This is especially frustrating given the discretion that school nurses have, when it comes to diabetes decisions. We have been told, “Trained nurses don’t have to follow doctors’ orders.” This is usually followed by a reminder of all the other students with diabetes who have come through the school before our granddaughter. My granddaughter experiences frequent lows during the school day, despite wearing a CGM. And it often takes school staff more than 15 minutes to intervene when these lows occur. The nurses have never been trained to interpret information on the CGM, so they wait until the low alarm sounds before taking any action.
These diabetic events may be a consequence of the school’s unwillingness to individualize her personal needs. We recently provided a physician-signed Diabetes Medical Management Plan outlining her specific diabetes care needs, such as instructions to check for hyper- or hypoglycemia when she is exhibiting symptoms of illness. But the school claimed that the document we used was obsolete. Officials told us that doctors quit writing this form years ago. What doctors? Do I know them? What do they have to do with her doctor that signed this? The school took the liberty of printing a different version of the form and completing it according to “what they are willing to allow.” The very next day, staff mistook a hyperglycemia for viral illness by failing to inspect the insulin pump.
I was called at work and told that my granddaughter had vomited and had a blood glucose reading of 318. I was informed that there were many students vomiting that day. So, I left work to pick her up and began the protocol for treating a high blood sugar at home. I checked her ketones, gave fluids, and inspected the insulin pump. There, I saw an occlusion alarm from earlier in the morning. The plan I submitted included insulin pump inspection. In fact, it spelled out the need to rule out hyperglycemia before considering a child to be sick. But this was the form that the school dismissed.
In the year and a half that my granddaughter has been in this school district, there has been one incident after another. Time and time again, we hear “we were really busy with sick children.” Because proper protocol is not in writing anywhere in a 504 or IHP, there is no legal recourse. Nothing is violated if there is no record of what should take place.
Missouri has laws to enable Trained Diabetic Personnel to help out at school, so others could help with her care. But we are told this only applies to a rural school district with no nurse, due to the expense. Speaking of expenses, we are constantly reminded of the financial burden our granddaughter imposes. For instance, we are often asked, “Do you know how much it would cost us to send a nurse on a field trip?” Then, a volunteer form slides across the table in my direction. Staff members have also complained about the costs of her diabetic, gluten-free meal plan. (Because she is a foster child, she qualifies for free breakfast and lunch.)
The ADA can provide recommendations for schools to follow, but these are not mandatory. If state laws do not exist to protect students with medical needs, then the reality is bleak. We have had one meeting after another with the school district, and nothing changes. It feels like 1970.
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