The downside of School Advocacy…

The biggest hot topic in diabetes school advocacy this year, by far, was kids using cell phones to manage glucose levels. These days there are cell phones with adapters that make them glucose meters. There is technology (Nightscout & Share) which can ‘upload’ -in pretty close to real time- a person’s glucose level to the persons cell phone and ‘followers’ (uploads to ‘followers’ meaning parents, caregivers, even the school nurse via the cloud)-when used in conjunction with a cgm. (Continuous glucose monitor-a device ‘attached’ to the person with diabetes.)

Here is the problem—all this awesome technology is great-but very difficult to use in most school settings-because most schools are behind the times in their understanding of diabetes management. Schools do not understand all this technology and how to allow its use in an inclusive manner.

Here is one situation that is making me lose sleep at night. During the 504 process a family is notified their child can’t have their cell phone during state tests. Use of the cell phone “across all school settings” is clearly written in the plan, and has been for awhile now. It is written in the doctor’s orders. The child NEEDS it to read glucose levels. Family is told-state regulations have changed—devices can’t be present during state exams. Long story short—calls, letters, and more calls to the State Education Department –and the verdict—cell phone allowed. Yahoo– BUT –school determines child must take the test separate from classmates—in a room with other children with IEP’s and 504 plans. Okay-parents get that—cell may make noise, child may need to pull out that granola bar and/or juice box to treat a low glucose or give themselves insulin for a high glucose—making noise–parents agree to child being moved to another room.

Testing day one- parents notified through the ‘parent grapevine’ that another student WAS ALLOWED use of the cell phone in the same room with classmates, in the same school district and actually phoned a parent mid-state exam—from the same room as the ‘regular’ class.

The result: the family who followed protocols, worked with State Ed, jumped through all the hoops-ended up feeling punished for following the rules.

What to do? If they bring this to the school district—it will affect the child who WAS allowed use of the phone in the same room as the class. If they DON’T say anything—it affects their own child.

The end result either way ends in heartbreak for someone’s child. Ends with a child, who deals with so much already, being caught in the middle of school bureaucracy and school not understanding/following their own regulations, nor understanding the medical needs of children in their care.

I don’t have an answer. I wish I did. I’m working to find one.

Children caught in red tape..the downside of school advocacy.


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