What to do when my son needs assistance in school

My son was diagnosed with Type 1 Diabetes and Graves disease(hyperthyroidism) on September 26,2009 when he was 3. He turned 4 on December 1st. I have been looking into what we are going to when he goes to school and I am running into a significant problem. The schools here will learn about carb intake and watch the signsof hypo and hyper blood sugars but they will not administer his insulin or do his bg readings. Any other moms out there with the same problem? If so, where did you go for help? Some consider diabetes a disability others don’t. I could really use some help. It is not realistic for me to quit working just to go to his school to do this.

Jeleis-

Every child with a “disability” is entitled by law to accommodations, including related aids and healthcare services. There are 3 key federal laws that protect the rights of a disabled child: Americans with Disabilities Act (ADA), Section 504 of the Rehabilitiation Act (Section 504), and Individuals with Disabilities Education Act (IDEA). For a young child with diabetes, who needs assistance and support with diabetes care, having a 504 Plan and Healthcare Plan in place is what you will need to do.

To learn more about the laws and how to advocate for your son, the following weblinks should be of help to you:

JDRF’s Type 1 Diabetes & School: www.jdrf.org/index.cfm?page_id=103439
ADA’s Diabetes At School: www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-car…

Both of these sites contain a LOT of information, which will reduce your worries and help you in obtaining a 504 Plan. You should also ask your son’s medical team for support on this. They have lots of experience assisting other families who are faced with similar challenges.

WIshing you every success…remember, YOU are your child’s best advocate!

-Lisa Shenson, Diabetes Parent & Advocate

Are you referring to when he starts kindergarten? If he attends a public school, he is protected and the school must make reasonable accommodations for him including administering insulin. Any school who receives government funding will put that funding at risk if they do not comply with section 504 of the rehabilitation act. There is more information on the ADA site: http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/written-care-plans/section-504-plan.html .

However, this may not apply to a preschool or private school.

Ok well I have already called 3 schools in my town and apparently they dont know about this. I will have to inform them. Thanks very much for this information. It is for Kindergarten in September. He is in playschool this year but its only for 2 hours so I test him before and prepare his snack as best I can. So far so good:) Kinda nervous about the full day thing tho:(

thanks alot for you help. Was starting to feel pretty lost.

The schools may not “offer” this information, but I would be surprised if they did not know about it. Last year Caleb was in kindergarten and we had procedures established but no official 504 plan. I essentially followed how things were handled for a prior diabetic student. There were many bumps in the road and by the end of the year, I was no longer being polite and I made it clear that my son was protected under the law and was being “discriminated” against, and he has “special needs” that were not being accommodated and a 504 plan needed to be implemented… I promptly got attention. This year has been a stark contrast. Going in with the presumption that you would like to discuss his care under a 504 plan and address the reasonable accommodations you expect should help. It may be a challenge to get people to adapt if they have never been through this before, but the reality is they NEED to adapt.

There are several example 504s available in the links listed and they are catered to children’s ages/grades. I would be happy to share Caleb’s 504 that we are using this year with you if you would like. He is currently in first grade. Let me know. :slight_smile:

My son’s school told me they would handle all situations properly and we didn’t need a 504 plan. Two months later it was VERY clear that we did. He is in 5th grade though and does his own testing and injections. We have an opposite issue though where even though it’s been only 5 months with diabetes and celiac disease, the school expects at his age that he knows how to handle everything and sort of leave him to his own devices. It’s very scary not being sure if the health tech really looked at what he decided to eat in his lunch and double checked his adding and division or if she just trusts him. As a result, I meet him at lunch everyday to be sure all is being handled. I definitely feel like he’s taking care of himself at school and after-school care. I think at your son’s age you should be able to push extremely hard to make sure he’s getting the proper care. Start the 504 plan before he goes to school and let them know you mean serious business from the start. Good luck to you and your son

Hi Lorraine,

I’d love if you’d share your 504 plan. David is going into kindergarten next year too and I’m not sure what to do to get started either.

Thanks!

You might want to contact the local JDRF office. In my city, the JDRF has a lady that specifically helps with 504 plans. If you have trouble in your school district, she will go with you to meet the the principal, administrator or whoever to get the plan rolling. She is fabulous and really gets results. You might want to call the JDRF office and just explain your problem to them to see what they can offer you in the way of help.

Good luck.
Judi, Type 1, 52 years
Type 1 son of 25 years

just to reiterate a little about what’s been written above… my 4-year-old is in preschool at a public school here in Colorado (Denver area). He has a 504 already. The district nurse is responsible for his care fully and has “charged” and instructed a couple of his teachers in that care fully. They capably and reliably test him and administer boluses as needed. They follow our specific requests on a day-to-day basis and we keep a log book going between us and his teachers in his backpack about his diabetes days.

They may need some help from you in terms of learning how to use his pump if he has an insulin pump (we had to provide them the Animas training materials) but otherwise they should be doing these things.

So how did you get all that set up? Also is that in Canada? I have contacted our health nurses here and they say they wont do it because it breaks the skin berrier and that is against their policy. So what kind of a nurse is this? Do you have to pay her to be there?

O lol just read your message again and I am not sure if it is different in the States as in Canada but I will still look into it.

Hmm… well I just went to the link but since I live in Canada I don’t know if they have the same 504 Act. I know that we are usually a little behind The States on stuff like that. I wonder if there is an Act in Canada. I can try to site the 504 thing but since that is not Canadian I am not sure it will fly. Kinda frustrating. I think I am going to retreat to do some more internet research:) Thanks for the help tho.

Is there an Act like this in Canada do u know? I surely hope so.

Hey Jeleis!

First I want to apologize - I missed somehow that you were in Canada. We’re down here in Colorado (USA). In the U.S. - Typ1 diabetes is recognized as a disability and protected by the americans with disabilities act along with a number of other legislative pieces that require publicly funded institutions such as public schools to make accommodations for our kids.

My wife and I are fortunate enough to life in a reasonably well-funded school district so they at least have a “real” registered nurse for every 4-5 elementary schools (grades K-5) who is in charge of the major healthcare needs of all the students in all those schools. Some districts in our country aren’t so fortunate… other’s are so rich that they have a nurse for every school.

My son’s teachers seem to really love what they do and really care about their students - including my son… so it wasn’t any trouble after finding that he has diabetes for them to WANT to learn more about it. My wife and I are praying very much that we find a similar love and commitment for him next year and in future years until he’s old enough to reliably test and dose himself.

I don’t know what the laws or regulations are in Canada but I hope you can find some reasonable help… you SHOULD be able to… it only seems right to me of course.

Good luck and God bless!

-Chris “Tyler’s Dad”

In addition to the 504, you can have what is called a parent designated adult (PDA) at the school who is responsible for helping with finger pokes and injections. It can be anyone who is willing to take the class and fill out the paperwork. I know my daughter’s hospital offers a class specifically for this and a school where I used to work had the school nurse and a CDE come to the school to train one of the PARA educators to be a PDA for one of my students who was unable to manage his own care. Talk to your endo and see what resources they have available to you. I see that you are in Canada, but they must have some similar law to protect students with a medical diagnosis in the public schools.

Hi Jelies,

Check out this link for information kids with diabetes in Canadian schools. Hope this helps!
http://www.diabetesadvocacy.com/school_policies.htm
Karen
McBride, BC

So I just talked to the MLA of Alberta Ty Lund and he said that there is in fact NO law or funding for a diabetic and that regardless of what the States has we have too many things being funded at this time and the average cost per child per year for that funding would be around 18000 dollars. Amazing isnt it? It is like I am hitting my head on a brick wall. If there is ANY other Canadian mother who has figured a way around these problems please please tell me how you did it. I just need to be pointed where I should be looking for some help.

Jeleis,

Refer to the following link http://www.diabetes.ca/get-involved/helping-you/advocacy/kids-in-school/ for information as it pertains to Canada. If you live in New Brunswick or Ontario, some degree of protective legislation is in place.

My son’s school board (Ottawa) has a written policy in place, but our experience is that the administrators of the schools within the board are often completely unaware of the written policy. I do know in Ottawa that JDRF is becoming more and more involved in advocacy, particularly to assist parents of school age children in bringing the needs of their diabetic children to the attention of school administration to put a workable plan in place.

David was not diagnosed until 10 years of age and I still worried like crazy whenever he left the house even though he often had a parent in the same school (his Dad is an EA) and a sister in the same school for the few years that he was at a school other than the one that his Dad works at.

It is a good thing to be looking into this now and not wait until school starts in September.

Cheryl

Your son is protected by federal law and possibly state laws as well. With federal law, you can ask for a 504 plan which your son automatically qualifies for under other and in that plan you can have a diabetes medical management plan as well as a things that guarantee his rights like having access to water and food at all times, the ability to carry his supplies with him at all times, the ability to take school tests at a later time and date if his blood sugars are too high or he is too low, etc. I don’t know which state you live in, but you need to look at any state laws that may apply as well. I wanted to add a link to the American Diabetes association but it will not show. I don’t understand why so I can’t add it, but you can google American Diabetes Association. Then go to the bottom of the home page. Click on Site Map and then when the next page shows up, click on discrimination and then click on Schools, etc. The rules that apply to schools also apply to daycares as well.