Are there any parents who have navigated the school district in Nashville, TN who are willing to be an advocate for those with young ones with t1d? My niece has a 4 year old in an early intervention class and is struggling to get them to provide the necessary care for him to be safe in the classroom. This is very concerning since he needs an adult to manage all of his diabetic needs at all times. The worst part is that the school nurses in the district are responsible for more than one school on a daily basis, so they are never at one school every day/all day. I understand this makes sense from a budgeting standpoint, but how are others navigating this with children who need constant monitoring? The school is also against having the parents manage the blood sugar levels on an app and having the ability to reach the responsible adult to provide instructions for maintaining his blood sugar.
Although the school is against parents monitoring remotely they may not (or may) have the right to deny you that option. The American Diabetes Association (ADA) has a resource on keeping children safe at school, and this link may help you understand your rights versus their wishes. You may need to find an attorney who specializes in disability rights. I know - I hate to use the terms “diabetes” and “disability” in the same sentence. Some people consider their diabetes a disability - others do not. But a disability lawyer can make sure the school is doing what it’s supposed to, to make resources available.
The next thing is to let the school know how to proceed in various situations: a 504 plan covers this and your son’s doctor would be a good resource to help with the details.
Check the Resources tab at the top of the page and do a search for your area - you might find a local chapter or support group, and members may be able to share their knowledge. You may even find information about what schools are particularly supportive. Connecting with parents at your doctor’s office may be helpful as well - not just for this but for personal support and help with child care.
@jowillnc Joleen The link Dorie posted is a fantastic resource for parents and schools. In there is a sample 504 plan that has the answer to your question:
…
3. Trained Diabetes Personnel (TDP): Non-medical school personnel who have been identified by the
school nurse, school administrator, and parent who are willing to be trained in basic diabetes
knowledge and have received training coordinated by the school nurse in diabetes care, including
the performance of blood glucose monitoring, insulin and glucagon administration, recognition and
treatment of hypoglycemia and hyperglycemia, and performance of ketone checks, and who will
perform these diabetes care tasks in the absence of a school nurse.
PROVISION OF DIABETES CARE
1.1 At least _______ staff members will receive training to be Trained Diabetes Personnel (TDP),
and either a school nurse or TDP will be available at the site where the student is at all times
during school hours, during extracurricular activities, and on school sponsored field trips to
provide diabetes care in accordance with this Plan and as directed in the DMMP, including
performing or overseeing administration of insulin or other diabetes medications (which, for
pump users includes programming and troubleshooting the student’s insulin pump), blood
glucose monitoring, ketone checks, and responding to hyperglycemia and hypoglycemia
including administering glucagon.
1.2 Any staff member who is not a TDP and who has primary care for the student at any time
during school hours, extracurricular activities, or during field trips shall receive training that
will include a general overview of diabetes and typical health care needs of a student with
diabetes, recognition of high and low blood glucose levels, and how and when to immediately
contact either a school nurse or a TDP.
…
Please encourage your niece to join the forum. There are other parents of children with Type 1 diabetes here who can help with the challenges she is going to face over the next ~23 years. I’ve got 4 members of my family who teach and one who is a vice principal and I’d be happy to pass along any specific questions she has. As a T1D myself I know that while remote monitoring and bolusing are great features, CGMs can be wrong, pumps can not deliver so they can’t replace the Trained Diabetes Personnel and training the people who have primary care of the child.
One other thing, for all the education, degrees, credentials, continuing education, etc. teachers and administrators have to have, nothing prepares them for the level of care necessary to keep a T1D child alive. Encourage your niece to start all conversations with people at her son’s school with an open mind, listen to their concerns, ask questions about those concerns then incorporate their answers into her requests for the care of her child. Caring about the people who provide care will result in better care for her son.
Thanks @spdif . To give credit where credit is due, I found the information in a post made by @987jaj in Match of last year. I thought I had seen a post a few weeks ago with some similar resources but I haven’t been able to find it - if someone does hopefully they will post the link here as it might have additional helpful information.
There was a reference to glucagon in one of the paragraphs Chris quoted: I wanted to mention that there is now an inhaled form called Baqsimi - may be easier and less anxiety producing to administer than the traditional glucagon injection, which might help increase willingness to “go with the plan.”
The incidence of diabetes is increasing, with one statistic estimating that Type1 is expected to increase in young people by more than 50% by 2060 (https://www.cnn.com/2022/12/29/health/diabetes-young-people?cid=ios_app).
And while Type1 is still a small fraction of diabetes overall, schools will need to be prepared for the expected increase.,
I was diagnosed in 1963 - before pumps, CGMs or even plain old BG meters. Things were much simpler then - basically it was learning to recognize the body’s signs of highs and lows and how to respond. By the time I was 5 it so I could tell my parents “I feel funny.” We didn’t have any way of testing what that meant but we learned it meant I was low and needed a snack.
Not to minimize anything - yes, this is scary for you and maybe your son as well. But in time he’s going to learn to communicate that something is going on and what he needs or get or needs to do, and will grow to be a partner in his own care. Even if schools cannot listen to a child because they are “a child,” knowing they have that insight will hopefully give you some comfort.
On a side note, I highly recommend you check out the book Think Like a Pancreas by Gary Scheiner. He has Type1 diabetes and works in the field so has a unique personal perspective that is particularly helpful.
@wadawabbit Dorie, my first Endo prescribed Baqsimi to me as a pre-caution two years+ ago (never had to use it). I think it was relatively new at the time. Here’s a link to a demo: https://www.youtube.com/watch?v=iReyEfsetWQ. Easy to carry in a small kit (smaller than a glutab tube), carry in a purse, keep at the house, take with on vacation. I think the “best by” is about a year out. The nice thing is its self contained, no mixing, just put the nasal tube in a nostril and push the plunger (kind of like Narcan).
I am aware of a collection of §504 plan subject matter experts collected in a FACEBOOK group. There are some Middle Tennessee residents in the group. Additionally, there are attorneys, school staff, and school nurses supporting parents in the group.
BOTTOM LINES:
[1] The US Department of Justice has started to act thru local Assistant US Attoneys (AUSAs) across the country. Nashville has a US District Court bench and an AUSA. The Facebook group has contact information and attorney created shell documents you may file with the Nashville AUSA to achieve compliance with a “Safe at School” (American Diabetes Association[ADA-org] program) environment for your niece.
The group in Facebook is “504-Diabete”. It is a ‘private’ group and has membership questions. Answer the questions honestly and an ADMIN will open the door.
See my comments. I have been busy with 504s in the other group.
As far as Baqsimi, there is a new downtrend on the product because of inconsistent and erratic absorption in cold and flu seasons because of nasal congestion.
Thank you, Chris. I did find the sample 504 plan that is on the ADA site and it is great.
I will encourage her to find the forum. She is feeling quite overwhelmed right now though, so I am not sure if/when she will do it. I am just trying to support her in any way possible.
Thank you for responding. Your participation makes a difference.
Thank you for the information, Jay. The school is currently scheduling an IEP meeting and she wants to see how that goes with incorporating what he needs for his diabetes care. I will keep this information in my back pocket though in the event things take a turn and she needs to look into the 504 Plan.
I appreciate your response and resources. She is very overwhelmed and I am trying to do any small thing that is supportive for their family right now.
Thank you so much for your help and support. I appreciate it as I am trying to do anything to provide help to the family right now. She will be going to an IEP meeting in a few weeks and she wants to see how that goes. I have forwarded her a lot of information.
You are very welcome. There is exciting news, the AUSA for the northern part of Virginia is moving forward obtaining consent decrees from several schools meaning more students are being protected.
