After care program refusing to help manage 5 year olds diabetes

It has been one heck of a year. Diagnosed in April 2015 at age 4, my son now 5 started kindergarten last week. Before the first week of school We had our meeting with the school nurse and his teachers to go over the DMMP. My husband called the after care program (run by the town, located at the school) to do the same and much to our surprise and dismay we were met with resistance. The Director of Parks and Rec made sure to say that he can still come but they will not do any sort of diabetes management. He told my husband perhaps now is a good time to teach our son how to do it and he has a son with disabilities and he just knows what his son can and cannot do. He also told my husband they don’t pay the after care staff enough money to take this on and “who would want to do that anyway?”

This was all over the phone with my husband. So i sent an email clearly stating what we were asking for (education for staff, training on insulin and glucagon–but we don’t anticipate them ever having to adminster insulin or glucagon because he will only be there an hour and a half and our plan is to have the school nurse check him right at the end of the day)

We were met with more resistance. The email in response was clearly written by an attorney and they misrepresented the holdings of a handful of court cases to try to say they couldn’t have non medical staff perform finger pricks and training on glucagon was unreasonable. and we can’t expect them to hire a nurse because that’s an undue burden.

I’ve contacted the American Diabetes Association Legal Advocates and the attorney that is helping me has been wonderful with great advice. They are obligated to provide reasonable accommodations under the Americans with disabilities Act and Section 504 under the Rehabilitation Act.

I can’t wait to get this resolved, we’ve been very careful not to discuss it at all around our son. I just don’t even know how these people go to sleep at night :frowning:

Hello. My name is Maria. I am the mother of a 16 year old boy with Type 1 Diabetes. I am sorry you are going through this unpleasant situation. I am looking for position in child care to utilize my skills of caring for a child with T1D. Would you like to consider private care instead of After Care? Where are you located? I am in Hamilton, NJ. I can be reached at 609-558-0118 or mariajohn@verizon.net. Have a peaceful day. Maria

T1mama,

I went through something similar only (as I once mentioned on this site), my sons went to a small school with no nurse. The school principle would not allow any materials to be kept at school nor would she allow a “surrogate” to do basic T1 tasks in case we could not get there. I found out only after he graduated and his school health records were sent to us that the principle had contacted a lawyer for the school. The other message we rec’d loud and clear if we raised ANY concerns was “we have a waiting list for students.” This was not a high-end school it was a Catholic school with tuition but not anything fancy – just the best option for my sons during those years. So we had to do everything. I did not think of contacting the ADA although if I had I think the school would have found another reason to boot us out.

The teachers were very understanding; it was just the principle who was hard core.

When high school time came – same school system – there was a nurse and then it was much smoother sailing.

Also in younger years, for my son with T1, one of us had to be there for all other activities. Again, by high school if he had to take a trip the teachers were remarkably and generously kind; they allowed him to travel and allowed me to stay in touch via cell phone, etc.

All in all, it can be a struggle. It’s WAY too bad that the Parks/Rec dept won’t just let him be there like all the other kids for one and half hours. Geez! They really have no right to discriminate.

yours, boston

This makes me so angry for you! We had trouble with our daycare when my 7 year old was diagnosed. They could not give her insulin or do her finger pricks due to licensing regulations. However, instead of making us feel like an inconvenience or annoyance, they willingly sent two people for training. Unfortunately, they never got past the licensing issue and we ended up having to take her out of daycare. thankfully, my job allowed me to work from home temporarily and now we have her in the after school program at her school. The nurse trained the people running it and so far it’s been a huge relief to not have to worry so much. I truly hope you can take some legal action. I’m not sure I could stomach sending my kid somewhere knowing how horrible the administration is in regards to the health and care of my child. Good luck to you!

Hello,

We are facing a similar situation. My daughter was just diagnosed this past august. she is in 4th grade. the after school program is run by the school/town, but there is no nurse after school. We are in MA and state law only allows licensed RNs to administer injections such as insulin and glucagon. They will not provide this care.

They have required our doctor to sign an emergency action plan in order for our daughter to attend. Our doctor has already provided school orders but they are not accepting them and both the doctor and us do not agree with their plan. They need to perform the glucose monitoring if my daughter is feeling low, and they have not agreed to that.

I have been trying to set a tone of collaboration, but they are making it very tough. i am waiting to hear back from the legal reps at american diabetes association as to different options. Even if they agree to the glucose testing, I also want someone to be able to administer glucagon in an emergency.

Our school nurse has been awesome, but the administrators of the program are the ones with the problems. The way I read the law is that they are required to provide this care, but i am thinking that i will probably end up having to obtain some advice from an attorney.

Thank you everyone. We are still working on it. I am fortunate that my mom is able to temporarily help out and pick him up from school until this is straightened out.

2LittleDivas - My husband and I have discussed “well do we really want to send him somewhere that is resisting?” But we decided this is bigger than just us. We want future diabetics to not have to face this problem, and I think the program is so scared of the liability that when they are required to let him attend they will do whatever they have to do to make sure he is taken care of so nothing bad happens.

jtmacc - The ADA legal advocate has been wonderful. We live in a state that does not require a nurse, however there aren’t a lot of attorneys that deal with discrimination in our area. First the ADA directed me towards a non profit organization in our area. They provided advice but didn’t have the resources available to actually take on the case. The ADA attorney then contacted a type 1 diabetic attorney that specializes in special education law that is about 3 hours away from where we live and he is going to help us. We hope him merely contacting the program will get them to comply but if it doesn’t he will come down to our area as needed. Good luck!

Thanks T1mama. We actually got some good news today. the program decided to hire a nurse for the after school program. It was more than what we were asking for but we’ll take it. Good luck to you and your family.

T1mama

keep up the fight. It is heartening to know there are specialty lawyers for those with T1. I wish I had known this many years ago for my son. So far, I have found that each “battle” for my son has become a learning experience about people, school principals, peers, teachers, even relatives. I am still fighting for my son and if I had to fly across the country for a specialty lawyer to help me advocate I would do it in a heart-beat. T1 is a tough road; it takes luck plus a lot more to succeed… it seems you have the strength to do what it takes. Pls keep posting when you have energy/time.

sincerely,