Hi, I'm new to the forum, and I'm afraid my first post is going to be an epic one. Mostly just because I'm so angry and upset.
I have 2 daughters, 6 and 8, both identified as gifted via state testing, both with Type 1 (formerly called juvenile) Diabetes. They are insulin-dependent, which means their bodies produce no insulin at all. Under the Americans With Disabilities Act, my kids qualify as disabled and are entitled to medical accommodations. They attend a public school, here in Chicago, and each have a 504 plan to manage their medical care at school. T1 isn't anything to sneeze at, since they lack any control over their blood sugars. If their sugar goes too low, they may pass out and have seizures, for example, which can lead to brain damage and death. In children, blood sugar is very unpredictable and low and high blood sugars can occur without warning or reason. Both my girls wear continuous glucose meters, which alarm if their estimated blood sugar goes above or below certain points, and they receive their insulin via a pump, where a plastic cannula under the skin is connected to a tube containing the insulin. The other option for T1D, as we call it, is multiple daily injections of insulin.
Sorry for the wall-o-text, but most people aren't very familiar with T1D. My older daughter is in 3rd grade and we are looking into supplementary education opportunities for her. Much to my surprise, a fair number of places I've talked to do not want her to attend. They've done a lot of hemming and hawing and tapdancing around the topic, but it boils down to this: they don't want my kid at their program because she's diabetic.
She's 8, she's a kid, but she does her own blood testing, insulin administration through the pump, and really just needs an adult to double-check her dosages to be sure they're correct. I'm not asking for these places to provide a nurse, or an aide, I'm not asking anyone to do injections, we just need an adult who will spend a half hour learning a bit about her needs, who can be her point-person and who will call me if there's a question or problem. At one program, I offered to come in myself to check her insulin dosage for lunch, but was told I wasn't allowed to be on campus. They had already told me they would not administer medication.
I'm frustrated, I'm sad, and I'm angry. I don't want to start my relationship with these places in an adversarial way, but they are breaking the law. It's against both state and federal law to deny an otherwise qualified child entry into a program because they have a disability. I don't want to just flat out tell these places that they're not legally allowed to exclude my kid, I don't want to escalate to calling in the American Diabetes Assoc. or other legal advocacy group, but I think it's deeply unfair to tell a disabled child that they're not welcome because the program refuses to even make an attempt at accommodating her medical needs. The fact that gifted programs would even DO this is incredibly disappointing.
My kids attend camps in the summer, run by the ADA, so they can have the experience of being in a place where everyone is diabetic, just like them. I want my daughter to have the experience of a gifted program where she feels intellectually normal, as well, but I also want her to be safe and I want her to be welcomed as a student, not in a situation where the program is forced to accept her because they can't legally keep her out. It never even occurred to me that her diabetes would keep her from attending these supplementary programs - not until she was welcomed with open arms due to her testing scores, and then shoved away due to her medical needs.
Has anyone else run into problems with gifted programs being unwilling to work with a child due to their medical needs? Has anyone needed to cite the ADA in order to make a program understand that they can't just turn a qualified child away because of a (manageable) disability? I'm really floundering.
