This is awesome. Thanks for it!
Hopefully bullet #54 takes care of this?? Even though, I get it…if the child is self-treating (or being treated by others), eating snacks, etc., in class…it’s going to be pretty obvious that something’s up…even if the students don’t know exactly what.
Yes, I think that would handle it. I think MOST teachers these days are more understanding of student privacy than they were back in the ‘90s. And then of course the science experiment thing I think is just the teacher’s fault for not remembering to explain to me that I couldn’t eat in class that day due to sanitary reasons… I’m not sure you’d have to get that specific in a 504 plan that teachers would work to accommodate the students’ diabetes needs in unusual circumstances (which could include field trips to certain areas, etc.).
These didn’t exist when I was a kid so I don’t know anything about what all is in a plan like this. One thought as I read through and seeing all the roles referenced (school nurse, district nurse, school staff, teachers, substitute teachers etc.); is the plan clear as to who you will work with on a daily basis? I assume it would be the school nurse(s). I would want that spelled out. Also, if there are problems with the plan execution, is it clear what the escalation path is. You want “one throat to choke” and not be bounced around from teacher to school nurse or district nurse etc.
Good Luck!!
No. We are meeting for the first time in March. Most of the things I have in this list are from Chris and Michel. All the details will be ironed out during our initial meeting with the school.
Great list!
Too, I want to add my happy birthday wishes to Liam!
Happy birthday little guy!
The one thing I notice is that a lot of the accommodations are based on Liam being allowed to test his BG and act on that number, but my concern is that if you want the data from the CGM to be considered important and actionable, then you need to have some bullet points related to how to interact with and respond to low alarms, high alarms and numbers. For instance, our care plan at daycare dictates treating lows and highs based on CGM data. Even if you require a confirmatory BG stick, you should probably dictate that, for instance, a caregiver needs to check a BG number if the CGM reads below 80 or above 200 or whatever.
The other thing I would imagine is a sticking point, that I’ve read in different forums, is when, say, a kid is more or less insulin sensitive or resistant, their settings are changed and the school district balks at giving a correction at, say, ISF of 200 instead of 250. So you need to specify that the parents are allowed to change pump settings and or insulin dosing regimens without a corresponding doctor’s note.
At Liam’s age I would also specify something like: At any given time, a person who is tasked with monitoring Liam’s CGM and has been trained to respond to low blood sugar is close enough in proximity to treat within 5 minutes. We’ve found that otherwise during extra events (say, a dance class), Samson will be going up to a different classroom and no one there is being told to monitor his numbers.
Also do you need to specify what to do in the event that a site comes out or a pod fails, or if the sensor falls off? We have these things happen frequently at school and we have contingency plans for how to respond when there is no data. I’m not sure if school nurses have to be trained to insert a new sensor or replace an infusion site, or whether it’s considered fair game for a parent to come do that.
@ClaudnDaye Do not make the cell phone and/or. Sharing requires a data connection which is not present on most watches.
Some of the stuff is very short-term. Like in a few years, Liam will not need very much help from a school nurse because he can do it all himself. I don’t think a school nurse did anything for me after 3rd grade.
The stuff that will continue to be very important as the years progress is that he can always test his BG and take insulin and have access to his stuff whenever he needs it.
All of the stuff you listed is important for the school to know.
But for him, there is one thing that is most important. As long as he has access to his meter, CGM, pump, and some sugar, it’s a level playing field for him and he can do anything any other kid can do. That’s the main thing he should know.
He should know it is a level playing field for him with just a few things.
I did this a couple of years ago, before they changed their logo:
Doc we will be getting him a Sony SW if he goes to school. So he will have that. The cell phone is more for goin to be able to contact us if he needs too and also for us to have multiple ways of tracking his BG through the day.
I love this thread. If either of my boys develops this condition, I will be using this information for sure! Thank you, @Chris and @Michel and @TiaG for all of your contributions towards this subject.
I don’t know anything about 504 plans and cannot contribute to that specific goal, but I have watched our local school systems’ methods for both the good and the pitfalls. Our last school system had one head RN for all four school buildings (primary, elementary, middle and high). Each school building had its own assigned “school nurse”, but I believe that none of them were actual RNs. They were a rung or two lower than RNs as far as certification.
Our current school system was looking to hire more “school nurses”, but they, too, were going to hire people who weren’t full RN’s in order to save money. My friend (mother of T1D middle schooler) had to go to bat to make sure the school system was hiring full RN’s (I believe) because there are limits to how much care that different types of health workers can give (i.e. administering insulin). I don’t know if that is state limited or what, but I think it might be.
Anyway, that might be something to ask about.
@ClaudnDaye The watch cannot connect to any share application. He needs the phone to make that connection. It should definitely be allowed in his 504. The watch also cannot connect to the phone out of Bluetooth range.
Agreed. For us, it is our regular Pediatric Endocrinologist who signs up off which aspects of T1D treatment that the child can self manage while at school. I like this approach (Doc sign off) as any sort of arbitrary age might make sense to State Legislatures but in reality is obviously impractical and blatantly stupid.
Our Doc has a list of items where they can check some and not check others in terms of child self-manage. This works well in the transition period where a child is moving from being entirely dependent to starting to become independent.
Our school is legally required to adhere to the instructions which the Doc provides. At this point with our child being both older and experienced, the Doc completely signs off that the child is entirely self managing such that the school is legally not allowed to interfere with any aspects of self-managed T1D.
In terms of academic accommodations, our school has been wonderful to work with so we never bothered with a 504.
The only time we needed a more formal approach was for SAT testing. However even for that, our school was our advocate with the SAT board and helped us gather the documentation we needed for reasonable accommodations. That all worked out quite well.
We did have one bad experience some years back on a field trip. A substitute nurse went on the field trip. The substitute nurse was not well versed in T1D and was not providing proper care which at that point in time was needed by a properly trained adult. With multiple T1D students in the school, it would not be reasonable for us to request the regular school nurse accompany all field trips. My faith in substitute nurses, once lost - is not going to return. I was a parent volunteer on all subsequent field trips. That was an easy fix.
This will be me.
Tia, what types of contingency activities do you have built into your plans? Just contacting parents so we can come put new ones on?
If the data drops out, we have a 2-hour period where they check BG after 30 minutes of no data, then again in an hour, and then after 30 minutes if data hasn’t come back, to call us to change out the sensor or take him home.
If his site falls off, yes, we come and change out. I also have it in our care plan that any time Samson’s blood sugar is high for a long enough time that they need to check and make sure his site hasn’t fallen out.
But if your child has a nurse at school, they should be able to do something like a pod change or a sensor change I suspect.
I’m not sure what we want the protocol to be for public school. If there’s a nurse I think I would feel comfortable with them doing a sensor change but not a site change.
And why not a pump site change out?
For us, the pump is less… Involved… Than changing out his CGM.
Well, two reasons.
a) The G6 is A LOT easier to do than the G5 change out. It’s really less error-prone. I always hated doing sensor changes before and now I would rather do those than a reservoir change.
b) the stakes are lower. If the site isn’t done properly (i.e. the nurse forgets to prime, there are a bunch of air bubbles in the reservoir/tubing), then Samson could be in danger and even best case, it can take a while to figure out why there’s a mysterious high that seems resistant to corrections. However, if the sensor is just not applied properly, it will immediately let us know it’s failed or it will give glitchy readings that can simply be checked by a BG meter.
SAT testing day today.
The accommodations previously requested through the College Board were still on file so nothing needed to be updated with that. The testing is not at our local school so it was difficult and stressful getting a location. Our school hosts SAT every other testing date - not this one. We only found out 3 days ago where to go. One might call this aspect of it a crazy process. But it did work out in time.
BG was pretty high (>250) yesterday evening but got it back down overnight and since 2AM it stayed in range between 70 and 90.
This is the second time for the SAT. Generally the schools we are looking at will use the combined higher score from any single testing date.
Hoping for a good testing day !!!
I wish you both good luck!!!
