“Permission to self-treat and self-carry supplies may be revoked should the administration or the school nurse finds the child is not responsibly providing self-care or is abusing the self-carry option.”
I find this random, first of all, but open to anyone’s interpretation. Does Section 504 prevent this kind of “stipulations” from being imposed?
Specifically, the Virginia code reads,
"A. Each local school board shall permit each enrolled student who is diagnosed with diabetes, with parental consent and written approval from the prescriber, as that term is defined in § 54.1-3401, to (i) carry with him and use supplies, including a reasonable and appropriate short-term supply of carbohydrates, an insulin pump, and equipment for immediate treatment of high and low blood glucose levels, and (ii) self-check his own blood glucose levels on a school bus, on school property, and at a school-sponsored activity.
B. A local school board employee who is a registered nurse, licensed practical nurse, or certified nurse aide and who has been trained in the administration of insulin, including the use and insertion of insulin pumps, and the administration of glucagon may assist a student who is diagnosed with diabetes and who carries an insulin pump with the insertion or reinsertion of the pump or any of its parts. For the purposes of this subsection, “employee” has the same meaning as in subsection E of § 22.1-274. Prescriber authorization and parental consent shall be obtained for any such employee to assist with the insertion or reinsertion of the pump or any of its parts. Nothing in this section shall require any employee to assist with the insertion or reinsertion of the pump or any of its parts.
Nowhere does the Virginia code authorize any school official to “make exceptions” to this rule.
These are some of the typical 504 provisions…see the one in bold.
Typical Provisions in 504 Plans:
Multiple staff members are trained to check blood glucose levels and administer insulin and glucagon.
All school staff—including teachers, coaches and bus drivers—who interact regularly with the student know how to recognize high and low blood glucose levels and respond appropriately.
Capable students are allowed to self-manage anywhere, anytime, and keep their diabetes supplies with them.
Needed assistance is provided in the classroom to increase safety and decrease missed class time.
Full participation in all sports, extracurricular activities, and field trips, with the necessary diabetes care assistance and/or supervision provided.
Permission to eat whenever and wherever necessary, including eating lunch at an appropriate time with enough time to finish eating.
Permission to take extra trips to the bathroom or water fountain.
Permission for extra absences for medical appointments and sick days without penalty.
Alternate arrangements for classroom time missed for medical appointments, because of periods of high or low blood glucose, or illness related to diabetes.
Who’s determing “abuse” if the child can treat themselves anywhere, anytime, and keep their supplies with them?
IMHO, it can not be a blanket authorization with no recourse from Administration.
Play Devil’s Advocate and look from a different perspective.
You know what kids are like. Some are insane.
So don’t picture your child.
Pretend you are another parent with a non-D child and there is a D child (not yours) who has horrible behavior problems with awful parents and the worst Doc in the world. This child is run amok and doing all sorts of insane things which we don’t even have to get into.
A reasonable Principle has to be able to maintain order.
In any event…
At some point, if the School Administration and/or the School Nurse do not want to cooperate and want to go head-to-head with a well behaved D child who is properly educated and is behaving properly then of course the ultimate show down is in court.
Hopefully one has reasonable school Nurse and Administrators that are able to apply relevant law and recognize a child with D who is both behaving properly as well as who is well educated in D management.
We have been extremely lucky both with our State Laws as well as the attitudes of our School Nurses and Administrators.
Certainly others have not been so lucky.
Hopefully you end up on the better side of things.
Okay, I follow you and I certainly sympathize with any child in this situation (because, this hypothetical behavioral issue is a big problem that should be dealt with better at home, but you indicated parents suck and Endo sucks.)
So, following this devil’s advocate perspective…what then?
Okay, say the “self-care” capability is removed from that devil-child. What then? The school just lets him or her die? A nurse or other staff-member follows the child around full-time and cares for them whenever necessary?
My main concern is the health of the child, so, assuming the child, parents and Endo are bad…what then? The school can’t turn the child away so they ultimately take 100% liability in assuming all “care decisions” are made for the child?
I didn’t self-carry most supplies in elementary school. Went to the nurse to test BG and treat lows, only carried my pump. And I clearly survived, though it wasn’t the ideal setup
Probably run very high BG all the time and only get insulin dose at lunch.
My child has some interaction with other T1 kids. Most of them are not in good situations. Safe to say that everybody does not receive the same T1D education nor do they all have good Docs. It is not good. All we can do is what we can do. You can’t help somebody else’s child that does not ask for help.
EDIT: Also, I do not think it likely these other kids would even be requesting to self-manage. It is just an entirely different world.
Yes, Liam isn’t going to self-carry and self-manage until he’s older, but this policy is governing ALL students…regardless of the age they are, or the grade they’re in…so when he’s in middle and high school, this could be an issue (not that he would “abuse” any self-carry/self-care that would warrant that being removed)
…but my bigger concern is WHO IS DETERMINING the “Abuse” or “child not responsibly providing self-care”.
This shouldn’t be up to the Nurse and shouldn’t be some willy-nilly decision based on an opinion that differs from the child, his or her parents and the health care team.
I would assume it is the nurse that determines this abuse, or the prinicipal in the case of a kind swinging sharps around or doing something equally as stupid with the equipment.
I personally don’t think that is a onerous rule, in that what if they have a kid that overdoses on insulin and almost kills themselves. The school wants to retain the ability to say that kid needs to be managed because if he succeeds in killing himself then we have liability.
Obviously I am in your camp that I think that the parents should be involved in the decision making process, but having seen a few T1 parents that don’t take responsibility this isn’t always possible.
Hell, we were in an education class with a family that was on the less well off scale, and they were complaining that they didn’t know how to manage their son’s diabetes and they were really pissed when the county said the para that managed their son in school couldn’t come home 5 days a week and help manage him at home.
In practice you really need to meet with the district nurse(s) and see what their actual approach is. The rules you need to install in the 504 are for the administration to be able to discipline the teachers and ensure your son is getting the care he needs. If you aren’t able to work things out with the administration, then time to homeschool in my book.
Our district nurse is really awesome. At our first 504 meeting she plainly stated that her goal is to have all of the kids self managing for at least two years before they graduate. Unfortunately, not everyone fit into that category. (and yes that is graduating high school)
Thinking broadly about what the “abuse” of self-carrying diabetic supplies could look like, I do think it’s reasonable.
If a kid was running around attacking other kids with lancets or an insulin pen or something, they clearly shouldn’t be allowed to carry those themselves. The school district probably needs to maintain that they have a right to intervene in a situation like this, or other things a “devil child” could come up with.
Realistically if this becomes an issue you’re probably just going to have to march yourself in to yell at people until the situation is resolved. I am skeptical that there are many school nurses that would make this move arbitrarily, and sign on to take more responsibility of a T1 who is capable of self-managing
Yeah when I was thinking about the abuse definition I was more thinking… What if a nurse thinks a 15 carb snack is too much and says the child is “abusing” their right to treat / self-manage their disease just to eat more snacks… and they believe the child should eat only 5 carbs?
I can definitely see where sharps and lancing device abuse would definitely be a huge problem.
I think you are going to be quite disappointed at the level of interaction. Unless your son asks for it, I doubt anyone is going to question how many carbs your son chooses to eat. You will likely see lots of action when he is low, but much less intervention when he is high. Schools seem like hospitals in that they want to ensure your son is alive when they return him to you, but they probably don’t care if he has a good A1c.
So this policy really is about blatent abuse (such as trying to poke people with your lancing device or some other very dangerous activity), and less about kids self-managing their T1. If that’s the case, I fully understand and agree with their stance and would want them to do nothing else since I don’t want my child, or any child, to be hurt by anyone else with any T1 related activity.
Do you think stipulations should be made by the school, within the policy, to state what types of behaviors they find abusive?
Update: On second thought…this may be one of those “they don’t know what they don’t know” activities…so there is no way they could (or should) try to create a comprehensive list of things…
Yes, I think you have stated it as well as I understand it. Honestly, you really need to trust your principal + Nurse team. If you don’t feel like you can trust them and have open dialogue (within reason), then I wouldn’t trust them with your most precious commodity. If you think that rule is going to cause you problems, don’t send him, find a different place.
Realistically, if we were in one of the more combative schools we have heard about from other parents, I would never let them manage my young son or daughter. We have been very fortunate to live in a school system that does most things right. If you similarly blessed, I think you will be fine, and honestly I trust your judgement in these matters. The fact that you have the option to home school if needed is a great feather in your cap. I am not sure how crazy I would have been trying to manage the system if my son was a T1 entering kindergarten or first grade. I like to think I would have handled it well, but honestly I am not sure.
My concern is most parents are trusting and when they are told their child can not self carry, they abide with out question. The policy is, to me discourages self carry. It gives authority to admin, with out guidance.
I think of this as actually protecting the child. I can imagine this coming into play for, say, teenagers who refuse to bolus for their lunch or check their BG ever, for instance. A doctor may say something like “sorry but this kid shouldn’t be the one in charge of deciding to bolus for lunch – they need to have the nurse check BG and give the insulin dose.”
But I could be misreading the statute. My impression is that any school is going to default to the situation where their staff is required to do/liable for less, so I can’t imagine a situation where there’s a responsible child who has his diabetes supplies on him all the time and they want to take them away for no reason. But then again, I haven’t started school yet.
If you aren’t able to work things out with the administration, then time to homeschool in my book.
i understand this rationale but some part of me thinks that doing this, rather than fighting the system to make it accommodate you, is ultimately doing a disservice to all the other diabetic kids who will come along after your child. I, personally, am very grateful for all those people who sued the pants off schools and daycares and took it all the way to the supreme court to ensure that, say, a non-licensed nurse was able to administer insulin injections in a daycare setting, who ensured an after school program can’t just decide not to take a kid with T1d, etc…
Of course I understand why some people just don’t have the ability/bandwidth to do this, but I would get a lawyer involved before I defaulted to homeschooling.
So far I haven’t found an interpretation of that VA law you cited. Here is an FAQ from my state regarding when a school can prevent a student from self-management:
"18. Are schools required to allow students to self-manage even if the student is demonstrating
behaviors and actions which violate the school’s behavior policies and/or are deemed to be unsafe?
No, students with diabetes are to follow the same disciplinary rules as are all other students if
misconduct is not a result of diabetes. Schools may require self-management “contracts” be signed by students, their parents and licensed health care practitioner documenting that school disciplinary policies and procedures will be maintained for all students. Self-management arrangements may be revoked if school discipline policies are broken or student behaviors are deemed unsafe for themselves or others."
Here’s a recent article you may have already seen from December in what I believe to be your neck of the woods:
My personal guess is that it all depends on the administration of your school and school system. After day care experience and elementary experience so far (much more limited than others who have already commented), it all comes down for me to who’s at the top and if they take me seriously when I discuss a problem with them. And if they take the problem seriously. Hence, we’ve moved and are much happier.
I do know of a local school that tends to misinterpret state law on T1D to suit their staffing issues and personal convenience. I know parents who have quietly fought them and won with the help of advocates. And I know parents who have taken terse letters from their endo’s to the school principal and school nurse regarding the inadequate school care for the child with little effect. But I also know of successful schools and families that have worked together well. It all depends on the type of administration and how big of a stick you are carrying, I’ve concluded.
Personally, I’m on the end of the spectrum where I refused to even consider a local private preschool whose enrollment contract involved a binding arbitration clause where all issues must stay confidential, the school selects the arbitrator, and the parent pays for it. No Thanks.
I assume VA is on the more progressive end of the spectrum compared to other states. But I could be wrong about that. I have a good friend that is living in VA solely for the school services his autistic son receives bc the school services are just that good…and he knows he will not receive that level of care anywhere else. So hopefully you guys are already well positioned!!! And you don’t seem to be the type to not advocate and educate those who need it…
