504 Plans and Children on Injections
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?
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?
Replies to This Discussion
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Permalink Reply by June English on -
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!
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Permalink Reply by Hollie on -
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.
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Permalink Reply by Alyce Kaplan on -
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!
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Permalink Reply by Adrienne Berry on -
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 :)
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Permalink Reply by Elizabeth on -
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/diabe...
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
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Permalink Reply by Adrienne Berry on
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Thanks so much for this info! I'll be copying and pasting it into what I've already got outlined for David and our goals for control while he's in school! I'm starting to relax a little more about things and feel prepared for when I meet with his principal.
AWESOME!
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Permalink Reply by Maddy on -
Hey Adrienne :D
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! :D
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Permalink Reply by Adrienne Berry on
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Hi Maddy,
Thanks for this, I'll contact your mom with any questions I have along the way. I appreciate the referral!
Adrienne
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Permalink Reply by Candice Carr on -
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!)
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Permalink Reply by Andy Mayshar on -
I was diagnosed a T1 in 1955 when I was 4. Obviously there were no plans, laws or anything else to help. My mother packed my lunch, put a roll of lifesavors in my pocket and sent me off. The teachers were informed and other than a few parents who though there kids could catch diabetes from me I don't remember many problems. On days when there was a birthday party and soda and cupcakes were being served my mom "snuck" into the classroom and filled a box/bottle of whatever they were drinking with diet something and left a fruit snack or a mini angel food cupcake for me. I actually felt special. If I were sending a kid to school at that age the pump I would want them to be on would be an OmniPod. so easy to use and so easy to train others to use.I would try and get my plan written so that I could test in the classroom. At least on a OmniPod, the Bolus/Correction is then calculated for you. Kids will find the PDM cool and they can also color the Pods. And in the event one fails even an almost untrained person can put a new one on in just a couple of minutes.Kids were actually curious and helpful. I would run BD's a little on the high side so as to not have many lows. I would ask the teacher if I could talk to the class and explain the situation in simple terms. It's amazing how supportive kids can be when informed and not acting out of ignorance. I would tell them my son sometimes needs help and who would like to be the chosen ones to help him.
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Permalink Reply by Kathy on -
I am sorry you are having a hard time. For now, I would go with a pen and then provide the lunch and snack, etc with the carb counts on each item. If they are willing to help add up the carb counts then your son can do the pen himself. You could put for example if his I/C ratio is 1:15 then 30 carbs=2 clicks. You can get different length pen needles to go on the end of the pen so that should help. Also there is the Novopen Jr. which doses in half units as well. You can demand a 504 for your son and you can contact 1-800-Diabetes and let them know about the situation with your son. They will send out a discrimination packet for you to fill out and should be able to get you a diabetes advocate to work for you and your son and help you with accommodations.
As to insurance I wish you the best, unfortunately Idaho is one of four states that does not require insurance companies to cover diabetes supplies. And remember to check for coverage not only under prescription but under DME or Durable Medical Equipment as well, since prescriptions may not cover Diabetes supplies, etc but they might be covered under DME.
I do wish you the best in getting your son's needs met. My nephew started a year late and it worked out fine with regard to him making friends for him making friends. It was done this way on purpose as his birtdate was just before the deadlien and his mom felt and I agreed it would give him more time to mature. Your son will do fine. I know this is scary, but things will be fine.
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