My 6 year old granddaughter, who lives in NYC, was recently diagnosed. She is fortunate to have good health professionals to assist with her medical care. But we would so appreciate advice and assistance on a few other matters related to her diagnosis.
For example, are there activities for her to participate in after school, since it appears as though she cannot have anyone accompany her during any after school activities offered by the city.
Are there exceptions to this policy? Do you have any other suggestions?
Thank you for any assistance or advice you can provide.
Hello @mmbasen welcome to Breakthrough T1D and this self-help forum. Sorry to hear about your granddaughter’s diagnosis but as many will tell you, there is really nothing stopping her from any activity she’s interested in. If she is in public school, I urge her parents to write up a EHCP (emergency health care plan) for dealing with how the school needs to accommodate and respond to high and low blood sugar. The EHCP is part of a broader 504 plan which defines the accommodations she will need in the class, on the bus, during lunch, etc. Public school is very much responsible and required to follow these plans which might include a trained nurse or assistant to be at the after school activities of her choice.
my son had a EHCP due to peanut allergies and the school provided a trained assistant on the bus and the nurse was required to follow his doctors instructions as well as provide trained care (could be the nurse or a trained coach) for activities
My niece had to navigate grammar school with Type 1 so my sister volunteered to be a class mom she chaperoned the trips and many of the activities which was a win-win for the school and got my sister in a close monitoring position to help my niece
There is always a way even for private schools arrangements can be made although it is not clear if they are required by law to comply the was public schools are
With a CGM her parents as well as you can follow her blood sugars and you can get alarms for when help is needed
Good luck I know some members here are 504 plan experts I am hoping if you have questions we can try to help you by telling our stories Good luck
Thank you so much for your response. My son has an elder daughter also with T1D, so he’s familiar with the EHCP in the public school system. His concern is finding care after the school day. My 6 year old granddaughter was in aftercare at the school, but after her diagnosis they wouldn’t allow her to attend, even if she had someone (her mom, a babysitter) with her, because they don’t want any outsider in the program.
I’m trying to help him find out if:
not allowing an outsider in the aftercare program is a steadfast rule in the Dept of Ed in NYC
if T1D other parents have found after school activities for their children in the NYC area
Thank you in advance, and good luck!
Michele
Hi @mmbasen . I’m stunned they won’t even allow a parent to help out!
I wish I could give you some guidance based on personal experience but I’m afraid I can’t. But school will be starting soon and if you don’t hear back from any parents in-the-know you might want to check with an attorney to verify the steadfastness of the rule.
Your best bet might be with an attorney who specializes in disability law. I’ve had diabetes for 60+ years, and while there are some things that make my life more challenging now than it used to be, diabetes is not one of them and I do not consider it a disability. So much as I dislike the term that specialty is more likely to be up -to-date on rules and rights.
