504 Plans and Children on Injections

Type 1 and LADA
#1

Hi Everyone!

David will be starting kindergarten at age 6 next fall (september baby) and if things go well with the insurance switch we’ll be able to get him pumping before school starts. However there is still a possibility he will be doing injections. I’ve been getting advice from you all on 504 plans but wanted to hear from those parents that have kids still on injections and what they have put in their 504s. I’m not sure what my rights are here, and have heard the horror stories about drawing up insulin for children by random people but this is the nature of the beast if our insurance doesn’t come through for us.

What are our rights for him concerning injections. I’m hearing from various faculty members that the school district will not let their staff give injections. There is no available school nurse, and they are requiring me to come to school however many times David needs an injection and give it to him myself. We are working on him giving his own injections with a pre-drawn needle that is sent every day for meals/snacks/etc. but in the case that he might need someone else, what can I expect the school to help out with?

We live in a small rural town and 25 minutes from school. I work to help offset the cost of his diabetes and it is not reasonable for me to be there every hour of every day at school.

What have you all done for your children, or if you were once in this position what did your parents/school do for you when you were younger?

#2

Your son should be eligible to have a TSS (a trained person specifically to meet your child’s needs). Get into contact with your doctor’s office and ask them to have a letter written to the insurance company and the school that outlines that your son is 6 and this will a NEEDED SERVICE if your son is to attend school. Legally, he doesn’t have to enter school until the age of 8. Until your son gets a pump, I would consider possibly home schooling. I will tell you as someone who went all the way through elementary school with diabetes, kids are cruel most of the time as are other parents when they do not understand. I was not fortunate enough to have an educated facility until my mother educated the teachers herself. 504’s are not always the answer,but they do help to get classes like PE scheduled for the class your child is in at appropriate times for his control. If he can test his own BS and understand the number, he is one smart 6 year old. It is important for you to be his spokesman and tell them what HE NEEDS versus what they have to offer. The schools have to make reasonable accomodations according to the Americans with Disabilities Act.
My parents requested my PE classes to be first thing in the morning or right after lunch to avoid lows. My mom always packed my lunch too. I only bought milk. The teacher also had peanut butter crackers in her desk and the nurse kept a bottle of Coca-Cola in a fridge in her office. Those were the treatments in the 70’s and early 80’s. Today with small BS monitors, his sugar can be checked if he feels “funny” or the teacher thinks he’s not acting “right”. That way they will know if your little guy is being a boy or having problems with his sugar. I would also consider an insulin pen for him if they have him on an insulin that comes in a pen. That way, the syringe is already pre-filled and there will be no guessing as to who drew up the syringe and your son can be taught about the clicks and what they mean on the pen.
Sorry it was so long, but we are doing this with my asthmatic son and our school is less than accomodating to the point I am looking for a civil rights lawyer to keep my child safe from his asthma triggers (citrus odors and foods).

#3

David is beautiful! What a cutie.

Can a 6 year old understand the complexities of a pump on his own?

Wonderful suggestions from Catherine. Hope you get a TSS for David.

#4

HI Catherine,

Thanks so much for the help! I have considered home schooling but my husband is not really going for it. Our sate laws in Idaho also delegate that any child between the age of 6 and 16 must be enrolled in school or provide proof of a home schooling curriculum. My husband doesn’t want David to miss out on public school or to feel like he’s “not allowed” to go. It is his way of trying to help David fit in, and David really wants to go to school. I’ll look into a TSS, that’s a great suggestion.

We were on the Apidra solostar pen but the insulin wasn’t getting all the way in him. I don’t know if it’s because the needles are a little bit shorter then the 3/10s or if it’s because it goes in a little slower. We finally had to just draw the insulin out of the pen with syringes again. Things went back to normal almost immediately. He also relies heavily on 1/2 units and the solostar pens don’t dose in half units. Maybe its something we could try again and re-calc his carb ratios with help from his CDE.

David can check his own finger but needs assistance with reading the meter and obviously counting carbs. He’ll give the injection to himself but it needs to be prepped for him. I was toying with the idea of sending his snacks and a few pre-loaded syringes in a ziploc bag labeled with the units in the syringe. I figured if he had a 1/2U, a 1U, a 1.5U and a 2U with him at all times then that would cover him for just his half day of school. Then when appropriate action needed to be taken, whoever is over him could call me with what syringe to use.

I am worried about mean kids an ignorant parents. We’ve already dealt with that to some degree in church and the community. He already feels self conscious about it, but certainly has his confident days too. The hardest thing is that he falls behind the school deadline and all his friends went to school this year. We were really counting on him having his friends rally around him and help support him, and were totally blind-sighted by the fact that they all would go a year earlier. He won’t know any children going into school next fall so we are working hard at making new friends. Thanks again for the advice!

Adrienne

#5

Hi Gerri,

Thanks! I guess I was unclear in writing about pumping. Our school has faculty that are familiar with children with pumps and are more open to helping David if he is pumping. However our current HDHP insurance doesn’t cover any diabetic supplies and we can’t afford to fork out the $6Gs for one right now. We will be switching carriers at the end of the month and going on a PPO plan so hopefully that will afford us some flexibility for getting into a pump system at a lower cost.

David’s school is being difficult with injections, stating that I will be required to come in and give every injection required by David. Basically they are telling me if he’s not pumping by the time he starts school then we need to be the ones in school caring for him. I know they can’t discriminate like that so I’m putting in to action a 504 and any other paperwork/requests that are within my rights.

I know that if David is pumping he won’t have much of an idea about what to do, but it will eliminate the hastle and worry about drawing up insulin and the difficulties the school is trying to force by not agreeing to administer insulin via syringe.

#6

Thanks Sarah for the encouragement! It seems that switching back to a pen is the way to go for school at least. I want to be able to go on field trips with David and hopefully I can work it out, however I have two other little ones at home so that poses issues sometimes. Hopefully they will be good notifying me of activities in advance so that I can plan for them and get a sitter for my other two! Does your child ever resent the fact that you are around on field trips? I don’t know if kindergartners have attitude like that yet, but don’t want him to feel more alienated because I’m there.

#7

Hi Andrienne,

Gotcha. Are there other diabetic children in the school?

Interesting that they’re fine with assisting with a pump, but afraid of liability with injections. Can’t pierce the skin, but ok to deliver insulin via pumping. Injections bother some people, but ridiculous to insist that you’d be expected to do this.

David is very fortunate to have a mother who’ll do whatever is necessary. Scary for kids whose parents don’t fight for their rights. Sorry that you have to go through this.

No coverage for supplies is so difficult.

Please keep us posted.

#8

This situation really breaks my heart. I know that we have a different perspective on injections, but it really bothers me that someone cannot be trained to give a pre-filled injection. You don’t need a medical degree to administer insulin shots (we are all walking proof of that). I understand that there are liability issues, but then there should be a nurse at EVERY school.

I know that this is not an ideal option for David, but I have know some children that were put on insulin schedules that did not require an injection during the school day. This usually means NPH (or some other insulin with a delayed peak around lunch time). I’m not sure if this would be more or less stress for you. You don’t have to go in, but it might mess up his blood sugars by switching to a less consistent type of insulin.

Also, you should check if an “i-port” (click here) technically counts as an injection. If you could send a pre-filled syringe and they insert it into the i-port, that seems to be even simpler than entered data into a pump. Perhaps with this David would be able to give injections to himself (under supervision?).

Another alternative, I wonder if you could get a retired nurse who would be interested in helping? Just on the off chance that there is one that lives near the school… (desperately trying to think of more ideas here!!!)

#9

Adrienne,

Our laws in PA say that children from 5-21 are afforded a free education, but legally they do not have to start school until 8. They are permitted to quit at 16 with parent signature (can’t believe some parents actually do this). As for your husband wanting him to “fit in”, David will fit in wherever David wants to. It really isn’t up to us as parents to get our child into a “group”. The kids will be curious about a lot of stuff, and I would encourage you to come into school, maybe after the first few days, and bring along some pictures of David with his specific symptoms about lows and highs. It will be helpful to the teacher and the other kids will actually notice if he’s not acting right. I would also recommend getting to know some of the other parents and invite them to bring their child to your home so they can see that your son is a little boy that needs a little maintenance, not someone who is sick. I explained it to my little guy (about 2 years old…12 years ago) that it was my gas tank to keep mommy going. He didn’t really understand much except gas in cars, but has since become very in tune with me, better than my husband. At 6, some simple terms, in kid language, will help the entire class and even some of the “educated” professionals treat him as a boy not a “diabetic”. I was also under the impression that insulin pens could be ordered with longer needles because some people have built up scar tissue and the shorter ones didn’t work, but I use a pump and my sets can be ordered in 2 different sizes and different types of insertions such as bent needle or straight in. Sorry about being so long again.

#10

can’t you transfer him to another school?
sorry,just hat every one sujjested everything that I have nothing in mind.
I liked your idea of sticking the numbers of units,you may find a hole or something to turn around so you can have someone administer his injection,just show them the pen(prefilled).
let him test,the administrater should be educated a little,sure they will come around,then,with a lunch pack,post a note.
I don’t believe in home-schooling,sure,kids are naughty and all,but he have to learn how to confront themif he didn’t learn young,it would be hard for him to socialize after that.
that’s what I think,hope it helps :slight_smile:

#11

We live quite rural. There is only one kindergarten that serves our valley of 6000 residents. Our options open up a little when he goes to first grade, as there are two elementary schools that he could attend for grades 1-5. Then it’s on to one middle school for 6-9, and highschool for 10-12.

I’ve considered NPH, our Endo isn’t recommending it but I’ll look into it more aggressively. My father is a lawyer, and although I don’t want to go in being difficult from the start, I have a feeling if I have legal representation things will change pretty quick.

I do have a friend that was just hired as a school aide in the elementary. She knows roughly how to care for David and said she’d be willing to help him if she were in the same building. I’m thinking of proposing that they switch her to the kindergarten school since no one else seems to want to touch a syringe and maybe they’d go for it. I do feel like it would be better to have David attend school vs. being home schooled so he feels more like everyone else.

Kristin, that i-port looks like a great idea. I’ll have to get some from our endo at our next visit! I’m just really hoping in the end that we can get pumping if our insurance will cooperate, as the school states that they don’t have a problem caring for him if he’s pumping.

I’m going in for an official meeting with the principal this next week to get it all from him and discuss David’s rights. Hopefully from that I’ll be able to gather from them, what measures they are/are not willing to take now that I’ve got a little more research on 504s and the ADA backing me up.

#12

Please keep us updated about your meetings with school officials. Maybe a few of us can offer a little encouragement and support as you go through the hassles. I am praying for you, your family, and especially for David!

#13

I’ll be sure to keep you updates in this post as I know more questions will come up as we get in to the nitty gritty of things! Thanks everyone for your encouragement and support. I don’t know what planet I was on when David was diagnosed as I consider myself pretty much a computer savvy nerd but I can’t believe I didn’t participate earlier on Tudiabetes. I think I was just so shell shocked from everything and the fact that I was expecting a baby when it all went down could explain a lot. I’ll be sticking around for awhile though asking questions and hopefully someday I can be helpful enough to answer questions too!

#14

I wish you luck with getting everything figured out for your son!
I got diagnosed in fourth grade, and at that time I only had to take shots 2 times a day (breakfast & dinner).
Although I am now a senior, 18, 4 shots a day, in high school my mom works at school as a cook.
It has been A LOT of help having my mom there when my sugars are acting up.
That stinks that there is not a school nurse and the school must do something considering diabetes is considered a disability.
Let’s hope he will get pumping before school starts or that the school will work something out with you all.

#15

Hi! I have Type I. I teach at a school in NJ with a phenomenally good school nurse. My sister lives in Colorado (none of her kids is diabetic, though) and they have no school nurses there. I looked at the website of the Children’s Diabetes Foundation in Denver, CO, and note that they have some sort of nurses’ cooperative that helps kids at school who have diabetes. (I got the impression that maybe they educate the school.) In any case, you should look up that website (Children’s Diabetes Foundation) and see what you find. Also - I took injections for some 35 years before I got my first insulin pump. When I was on NPH, life was HELL! That stuff used to peak so quickly that I’d need to eat lunch 3 hours after my breakfast injection. The downside to an insulin pump at school (as our school nurse has found with our current 6-year-old diabetic enrolled in the school currently) is that when the infusion site goes bad (yes, that DOES happen) the kid is getting no insulin at all and she has to give her an injection and then get hold of her Mom to take her home and change the infusion set. That’s a big pain, as you may imagine. Well, taxes are sky-high here in NJ, but we do have nurses in each and every school. Good luck!

#16

Hi Adrienne

I hope you have worked out the problem with injections–what about blood testing? Where does david do that? My daughter was diagnosed when she was 7 years old–about 20 years ago. Even then I was told that it was illegal for the school to not come up with a plan.Is there a nurse in the schol district? If so, and the staff refuses to give shots, the nurse has to be there every time he needs one. I believe that once the principal hears that they will delegate someone. In my daughter’s case, they didn’t even want to do blood testing. That changed prety quickly because they had to be in compliance and soon everyone in the front office knew all about diabetes and what they needed to do.

I have also been a special ed teacher for over 25 years and now all about IEPs as well as 504 plans. Be sure that each teacher he has class with–gym, music, art, etc. knows signs of lows and highs, and has juice or glucose tabs in the room–you probably have to supply that. Also, if he needs to go to a specific place to test his blood and he’s not feeling well, be sure that someone goes with him. If you contact the ADA or JDRF they will send you a school information packet… I would be very surprised if the school never had a child with dibetes go through the system. If so this is your opportunity to educate them. They will probably be less anxious if they learn about the disease–most people think that blood testing and injections are the worst part of having diabetes, because thet is all they can see… Catherine is right–504 plans don’t solve everything but it is best to get things in writing from the start. People have 504s for all kinds of reasons. be sure there is anote in the plan about some kind of flexibility with expectations after a low BS–like participation in gym. He’s too young for testing situations, but you’ll need that later. Also, David’s needs will change as he grows so you just need to be in touch with the 504 coordinator to let him/her know about changes.If you need to you can request a meeting.

I also have had diabetes–since 1969. It is quite amazing how far technology has come! At that time they expected you to collect your pee in a cup and put a certain number of drops into a test tube with a pill that made it fizz–like alka-seltzer–and then try to match the color to some chart. I was 11 years old–that lasted about a week with me and I was done.

Believe it or not, as an adult working in a high school as a special ed. teacher for 25 years, I was discriminated against, harrassed, and retaliated against. I had a couple of doctor letters in my file and there was never a problem before. It never occured to me to have a formal plan put in place. My needs were just met until there were a lot of administrative changes all at once. I’ve had eye changes so I needed a bigger computer screen and someone to input info. on IEP forms for a day, once a year. It’s a long story but things got very nasty which caused my diabetes to be way out of control for almost 2 years. I’m currently on medical leave. Unfortunately, I had to hire a lawyer and the issues are not resolved yet…

However, if your son had to get this disease he was born in the right era as far as research goes. There will be a cure in his lifetime. While we wait for that to happen there are many new technologies on the horizon to help us cope with the everyday stuff. In the mean time try to be sure he is David first, with al lof his wonderful traits, and just happens to have diabetes, not the DIABETIC…

Good Luck!

#17

Thanks for the reply. We live quite rural and our schools don’t get much funding from the state. There is this weird loop-hole for the schools in our area in that we are taxed the highest due to it being a bedroom community to Jackson Hole (lots of second and third homeowners/buying up real estate) but our taxpayer money goes out to other areas in the state. There are no school nurses and yes they have had diabetics before but none this young. The previous D kids have been 11+ years old and have been primarily responsible for their own care.

B/c David isn’t in school yet we are on a 2 hour BG check schedule. I’m just gathering this info and trying to put it together for my initial meeting with the school this next month to discuss David’s needs for next year.

I apreicate the support, hopefulyl with everyone’s great suggestions I’ll be able to work it out :slight_smile:

#18

Hey Adrienne :smiley:
I don’t know much about this.
But when i was first diagnosed and on injections I was a freshman in highschool.
My mom fought for the 504 plan.
She has a page … http://www.tudiabetes.org/profile/CLuis
Im sure she would love to help anyone with this. Seeing she’s been through this.
Good luck and i hope the first day of kindergarten goes well! :smiley:

#19

Good luck! My daughter is 18 now, and in college but the best advice I can give you is to speak up and be assertive. I did have problems the first year - I had a school nurse of all people who did not like helping her do fingerpokes because of the blood and actually requested that she be transferred to a different school. I had to write letters to the school board and everyone else I could think of. Basically told them that the average kid that skins their knee on the playground bleeds more than a finger poke.

The people that saved my life were the counselors at Boys and Girls Club. I was lucky enough to have a director and assistant director at the Boys and Girls Club go to her school every day at lunch and do her fingerpoke with her. I don’t know what I would have done without them.

The best advice I have for you is don’t accept no as an answer. Keep pushing (nicely!)

#20

State funding or no state funding, it doesn’t matter - it’s federal law that obligates them to accommodate your son’s diabetes. He’s covered under the following statutes:

The Rehabilitation Act of 1973 (Section 504)
Section 504 of the Rehabilitation Act requires any school that receives federal funds of any kind to provide children with an identifiable disability or impairment — including diabetes — with a plan intended to make sure that the child is able to safely participate in all school activities and get appropriate care for their medical needs. Schools can lose federal funding if they do not comply with this law, and a school cannot require parents to waive liability as a condition of giving medicine. Thus, all public schools must work with parents to create such a plan — although we need to make the point that the parents must first request the plan. If you do not submit a letter each year to your school district requesting a plan, the school is not obligated to provide one — so be sure you do your part before the beginning of the school year.

The Americans with Disabilities Act of 1990
The ADA prohibits all schools and daycare centers, except those run by religious organizations, from discriminating against children with disabilities, including diabetes. Protection under is this law is the same as that for Section 504.

Individuals with Disabilities Education Act (IDEA)
IDEA requires the federal government to fund state and local education agencies for the education of students with disabilities, including children with diabetes. The school is then required to develop an Individualized Education Plan (IEP) to accommodate your child’s needs. What this means, in effect, is that your school district cannot use the expense of supporting your child’s special needs as a reason for refusing your request. As with the 504 Plan, you need to notify the school of the need for an IEP in advance of the school year so they have time to create and implement the plan.

More information about disability and anti-discrimination laws is available on the Children With Diabetes website, http://www.childrenwithdiabetes.com/d_0q_600.htm - I would also suggest calling the American Diabetes Association, which has extensive information on making sure you can effectively advocate on your child’s behalf http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/resolving-challenges/

Also: The Disability Rights Education & Defense Fund provides information for parents of children with disabilities who have experienced discrimination or educational neglect in their schools or community. The Fund has staff attorneys available for free legal advocacy support through their website, by phone, or by e-mail.

Contact info:
2212 Sixth Street
Berkeley, CA 94710
Toll-free: 800-348-4232 (v/tty)
Phone: 510-644-2555 (v/tty)
Fax: 510-841-8645
E-mail info@dredf.org
Website: www.dredf.org