Yesterday I received an email from a fellow T1D Mom and it physically HURT to read it all the way through. Without names or places given, I am going to tell this story…because I am mad, because it’s wrong, and mainly–because this is a CHILD we are talking about.
This amazing Mom signed her child up for a care program at a facility in our town. A PUBLIC facility that tons of kids and adults alike flock to. The child was to start there today, but won’t be going because the child has type 1 diabetes. The Mom got the email YESTERDAY notifying her that her child can’t attend. (Mind you–not a phone call–an email!)
The email this Mom received had a lot of hocus pocus written in it, lot’s of what look like ‘legal’ regulations from State agencies. The email, though written in a business fashion, blamed the parent for this–basically, your child can’t attend because YOU didn’t prepare us. WHAT?? The parents filled out the registration, sent all the documents in, did what EVERY parent does to sign their child up for this program–went beyond that and offered to come in and meet with staff to give them a diabetes 101 class, sent paperwork from the child’s heath care team, provided a medical management plan-but the child was denied-because this child has type 1 diabetes-and the facility said they ‘were following regulations.’
Well, guess what-a review of those regulations state the opposite. ” a provider must enroll children with disabilities and must administer medications to children to be in compliance with the ADA (American’s with Disabilities Act), then the provider must enroll children within the same time frame the provider would enroll children without a disability.”
As of yesterday, this place was still enrolling kids for this program. Just not kids with diabetes.
So do we hide our kid’s disease in the nearest closet? . Do we not disclose it-because maybe our teen with T1D won’t get that job, maybe our child won’t make the team, maybe our child can’t go to a popular facility that all their friends go to? But not disclosing the disease–can be dangerous. If an emergency happens-no one would be able to help because they would not know what they are dealing with.
The kicker-this type 1 kid does their own shots, their own glucose checks–self manages their diabetes. So on a regular basis-this facility WILL NOT be medicating this child–they will only be allowing this child to medicate themselves. The only medication this facility would have to provide THIS child–is a life saving glucagon injection if an emergency occurs. They CAN be trained to do this, and the training is FREE from the NYS Health Department. The facility just did not do what they are obligated to do. Get trained, get ready- to help this child fully participate.
So last night, parents were scrambling to find a care center for their child. Facing the possibility of losing their job–because they may have to call in- because a place they had pre-arranged for their child, at the last minute said NO.
So last night, a child cried themselves to sleep, because they can’t be with their friends today, because this disease took one more thing from them, because a facility whose mission statement says “We believe that everyone should have the opportunity to learn, grow and thrive.” didn’t follow through.
This is not my child, so I could be thinking–not my fight. But it IS my fight because this easily could be Frankie. Parents of Diabetics–this is OUR fight because it could be ANY of our children.
To this facility-please know-parents of diabetics TALK and we will be talking about THIS. We will tell our friends, who will tell more friends, and this horrible choice that you made will spread. Everyone makes mistakes, please make the choice to correct this one. That message will spread too!
Hoping the title of my next blog reads…T1D access APPROVED in my town.