[Tatermom]

I am so aggravated!!! Just got back from a meeting to discuss the use of Taylor's pump. Felt like a trial. My husband and I vs. the military community health nurse, lead teacher, school director, and the EFMP (exceptional family member program) coordinator. The purpose of the meeting was to justify why the staff should help to alleviate some of the burden of the three meals a day that Taylor is served at school. Currently, my husband or I will leave work three times a day to bolus her for each meal.

I took every item that the school serves, and calculated the carb count for the portion served. For instance if meatloaf, mashed potatoes, salad, and milk are served, I individually calculated the carbs for each item. So if Taylor doesn't eat the potatoes, you put in the count for the other three items into the pump. No math involved. If there are any questions my husband and I are always available.

Obviously, we would provide training possible through the pump trainer or diabetic edu nurse just to 1. be on the safe side and 2. make the providers feel more comfortable.

The response is that the situation needs to go thru the post doctor, a general practitioner who has "heard of pumps". From there it will go to the department of the army for a decision. Problem is that the regulations have not been updated since the pump was created!!!

Am I asking too much? I only want the best of care for Taylor, but we cannot afford to not work. What is the compromise? Why does EVERYTHING have to be such a fight.

[seacomp]

Originally Posted by Tatermom

Am I asking too much? I only want the best of care for Taylor, but we cannot afford to not work. What is the compromise?

Boy, that a really tough situation! I can see your problem, but I can also understand the reluctance of people who don't really understand what's going on to take responsibility.
Is it possible for Taylor to have a fixed menu, whether "brown-bagged" or not, for one meal? Then at least there would be no calculation. Or is there a problem that Taylor couldn't always be relied to eat everything?
I assume that these people do understand what a hypo is and how to treat it. Are they comfortable with that?
Long term, the only solution is for Taylor to be able to take over more of her own care. There are T1s in the forum who were DXed at Taylor's age or younger, perhaps they may have advice on how gets to take over their own care.
The best to you and Taylor.

[scara]

I gotta say, I have nothing but respect for all the work and effort you and other parents like you go through for your kids who have diabetes. Having just started to go through having diabetes in my 30's I just don't know how you all do it.

I hope you can get the support you need, hang in there!!

[Tatermom]

The rules keep us from bringing in food for Taylor or that would be a great solution. Everyone knows hi/lo symptoms and treatments. The issue is liability and the thought that plugging numbers into the pump would take 10 minutes each time.

[chs4]

Isn't this what a 504 Plan is supposed to deal with?

Section 504 of the Rehabilitation Act of 1973
According to this law, parents of qualifying children have the right to develop a Section 504 plan with their child's school. To qualify for protection under Section 504, a child must have a record of such impairment, or be regarded as having such impairment. Schools can lose federal funding if they do not comply with this law. Parents can use these laws to ensure that, while at school, their children with diabetes can fully participate in all school activities, while at the same time caring for their medical needs. This means that the school cannot refuse to allow a child to be on the honor roll, deny credit to a student whose absenteeism is related to diabetes, refuse to administer medication (a school cannot require parents to waive liability as a condition of giving medicine), and determine sports/extracurricular participation without regard to the student's diabetes. Any school that receives Federal funding must comply with IDEA and Section 504 laws. A child need not require special education to be protected.

I think a well crafted 504 Plan (with a lawyer's input if necessary) would go a long way in educating the teachers and administrators at Taylor's school.

You can find sample plans here: Sample 504 and IEP Plans

[seacomp]

Originally Posted by chs4

I think a well crafted 504 Plan (with a lawyer's input if necessary) would go a long way in educating the teachers and administrators at Taylor's school.

From what I understand from Tatermom's post this school is on a miltary base and run by the military, that might make a lot of difference as to how far a civil law can be taken.
It is certainly, all to the good to bring up the law and its provisions as an example of the will of the Congress. But, whether such laws hold on a military base, I don't know.

[Tatermom]

504 plans won't come into effect until she is in regular school. While the school is on a federal installation, they do not necessarily fall under federal law in regard to the Americans with Disabilities Act, for instance. The issue is also going thru the medical command JAG (military lawyers).

Here is an excerpt from the military regulation:
On occasion, CDS personnel may be required to perform health related practices as a reasonable accommodation for children with disabilities (special needs), pursuant to the Rehabilitation Act of 1973, as amended. These specific caregiving health practices are usually outlined in the child’s Individual Development Plan (IDP) or the Individual Family Service Plan (IFSP). Such practices may include, but are not limited to, administering oral medications, clean intermittent catherization of the bladder, gastrostomy tube feedings, or assistance with self–care for medical conditions including glucose monitoring for diabetes. However, CDS staff and Family Child Care providers will not perform functions that require extensive medical knowledge (e.g., determining the dosage or frequency of a prescribed medication); are considered medical intervention therapy (e.g., those not typically taught to parents by physical, occupational, speech therapists or special educators as part of a home program); or if improperly performed, have a high medical risk (e.g., injection of insulin). CDS personnel will adhere to the following guidance in developing SOPs for performing health related practices, including the administering of medication to children.

The thing that kills me is the principal. Realistically, Taylor is going to kindergarten next year so we'll start the process all over again. But I know that she is not the only diabetic child of a military servicemember. What about the others? Better yet, what about the diabetics that will be affected in the future if a precedent is not set?

Guess I'll put my soapbox away for now.

[duck]

Alisha, when I was dx'd I was still under the insurance plan that was provided to my dad for being a 22 year Army Vet. At the time (and even now) we were thankful for the care provided. Knowing what I know now, though, I don't see how it didn't kill me. Only two shots a day, only this much insulin, here's your meal plan with acceptable foods (two pages long), an ancient book from 1965 about urine testing (this was 1990). Their approach was antiquated, and it does not sound like anything has changed for the better. I feel for you and wish you luck.

[Tatermom]

Ohmygoodness!! Thank heavens it's not that bad anymore...after all they did pay for the pump. Unfortunately the regulations have not been updated to accomodate pumpers. Maybe if I stamp my feet hard enough and thrust my picket sign high enough a change will come.

[dws]

An idea only!!!
Since the meals are going to run about the same in carbs etc. Adjust her basals to cover the average carbs, (on the low side) so no bolusing is required. She would run high enought to not worry about hypos and you could go tto the school once a day, mid-afternoon , to make a correction bolus.
don

[Tatermom]

Originally Posted by dws

An idea only!!!
Since the meals are going to run about the same in carbs etc. Adjust her basals to cover the average carbs, (on the low side) so no bolusing is required. She would run high enought to not worry about hypos and you could go tto the school once a day, mid-afternoon , to make a correction bolus.
don

Good idea, thanks! That was one of the options we have considered (there aren't many). The endo will freak out if we tell him, but what else are we to do?

[JediSkipdogg]

I would call the JAG office and try to see what they have to say about it. And keep talking to them until you get an answer you want. Remember, that if anything does happen to your child, the school and base can be held liable. If something like this then hit the media, a huge problem would be noticed and who knows how they would try to cover it up. But I would keep contacting people and try to get the policy updated to include pumps in it. The problem is the people that make these policies have no idea what diabetes is probably and if they do, they are probably sitting on a 1980 treatment method. Keep calling around, and if you don't get an answer in 24 hours, call someone else.

[Cinnabon]

DONT give up, no matter what...
I do not wish any bad for taylor for mentioning this, but get in their soup, in their face, till they cant no more.
Use the complication technique like a lot of us have... "The insurance co. doesnt want to be paying for things like Kidney transplants, Kenelog shots, and so forth, DO they?"
God keep Taylor in the best shape ever, but sometimes these ignorant "red-tappers" dont understand regular english.