After School Programs and T1D

(Luisa) #1

Hello,

I am looking for feedback on experiences with after school programs. We live in CA, they have a program at my sons school (he is 12 in 6th grade) called Think Together. My son has attended this program before his diagnosis and we never ran into any issues, unfortunately, after being diagnosed and enrolled I feel as though there has been some push back from the program director (new school since he was diagnosed, new director) due to my sons T1D diagnosis. We started to see flags of their push back when we were met with a surprise meeting with the program director after we had met with the school about our sons 504 plan. At this meeting it was made clear that the program staff would not administer medication to our son, we never asked them to unless it was the glucagon (our son can administer his own insulin if needed & the school nurse checks him and administers insulin at the end of the school day before he goes to program making any adjustments per the drs orders as needed, he is only at program from 2:30 to 5:30). At this meeting we were also asked at what glucose level would they call 911? (they suggested 300, where they got this number from I have no clue). We explained to them to the best of our ability, along with the school RN that there is no magic number. We explained that working together with the nurse at the end of the day and monitoring his Dexcom he shouldn’t need any medication etc. we did a lot of explaining, and reassured them we would work together with them and the school to make our sons attending possible. Where we are now, program implemented their own rule that at the end of the day check out with the nurse anytime the glucose levels were over 250 he would need to be picked up immediately. sigh. since then this has happened a few times, and usually by the time we get to the school (within 30 minutes of being called) his glucose levels are below 250. When he goes to the nurse after school he gets an adjustment if his levels are high and for any snacks the program will give him. This is frustrating, we feel that program just does not want to deal with him and the easy way out is to send him home anytime he is over 250, a number they chose…anyone else dealt with something like this with an after school program? At this point we are looking for alternate options so he does not have to attend program next school year but it is still frustrating that he can’t attend with all the other kids…

Thank you for reading my rant!

(joe) #2

@luisa hi Luisa,

my son does not have t1 but, he does have an emergency medical plan.

Section 504 of the U.S. Rehabilitation Act of 1973 is designed to help parents of students with physical or mental impairments. YOU are not only on his educational plan team, you are also a leader of this team.

In my opinion, You are not going to make friends doing this but it will get the job done. review these numbers and the actions, and have your endocrinologist write new orders (with your input). Call an educational plan review meeting in writing with a date and signature on the paper (the school is required to comply). At the meeting, hand them the doctor orders. This effectively overrides the nurse and the administration. If they push back, they are 100% liable, it is unlikely they will resist, further, you can threaten legal action (works for the 2% of the time they do push back) and also if necessary, obtain legal counsel (very rare)…

I am confident the school will yield.

good luck!

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(Luisa) #3

Thank you Joe! I will look into this. While the school itself complies, the after-school program runs separate from the school which is why they claim their rules are to be different. But to your point, they should be able to follow the 504 and work with the team to make it possible for him to attend and not such a hassle. Sigh, it’s hard when they don’t fully understand T1D, we try to explain but it is hard to understand when you have not had to deal with it directly. I appreciate your input and time, have a great day :slight_smile:

(Mo) #4

Hi Luisa,

I so understand your frustration. My daughter, age 10 and diagnosed 6 months ago has a 504 plan in place at school, but it does not cover the after school program. It makes life so difficult as I have a kid in another school and I seem to be in a constant state of stress running between the two schools. Not to mention that my daughter misses out. Occasionally she has stayed at the program until the school office closes at 4, knowing is she has a problem someone there will help her. I find it so challenging trying to make it so my kids gets to do everything she always did before diagnosis, and so she feels the same as every other kids, but it is so hard sometimes.

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(Luisa) #5

Thank you for your response, you can understand my frustration. If these programs are funded by government dollars I feel they need to make more of an effort to accommodate children such as ours specially if we are willing to empower them and be of assistance in making it possible. It gets so frustrating at times but changes can only be made if we continue to advocate for our kids. Good luck!

(ReneeM) #6

Luisa, I have a 13 year old son. dx’d, I have a 13 year old son dxd ar8, things to note:
only 17% of people achieve A1Cs (google it)
teenagers and young adults do not
your endocrin should be asked- what percentage of teens in their clinic meet A1C.
ask your endocrin what is average A1c for your child’s age range.
I suggest this because 250 is not an emergency it’s average or a teen who is going thru growth spurs and puberty, etc.
my hope is this comes from ignorance and not malice, if you fear your child is being excluded, American Diabetes Association, has a great advocacy hotline for stuff like this.
I agree with getting new orders.
also, some states make it illegal for a non-RN and non Paramedic to adminn glucagon so maybe that i why hesitancy.

Best of luck!

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(Luisa) #7

Thank you for your input! I will look into that and ask those questions at our next appointment. In our case the after school program coordinator can administer the Glucagon if needed, they actually do not worry about the lows which to me hints that their fear is coming from ignorance as they are more concerned about him being over 250 than him dropping low :woman_facepalming:

(ReneeM) #8

good luck post back if any issues also Facebook has many support groups , likely one specific to your state so maybe able to help w/local resources.

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