Gifted Issues Discussion homepage Forums Twice Exceptional Gifted programs and medical needs

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.

Welcome to the forums, Bkwyrm. I'm so sorry about the experiences you and your dds are having! Argh!

I have a dd who has life-threatening food allergies, and yes, I've had to quote the ADA Multiple times. Our brick walls actually happened in public school, not in a special program, and some of the teachers/administrators we ran into were, quite simply, clueless. Clueless about the law, clueless in understanding life with a disability, and sometimes just generally clueless about humanity. For instance, an administrator at my dd's public school once told me (and I quote): "Yes, we could provide her a 504 after she's had an anaphylactic attack at school and she died." (as a follow-up to why they couldn't provide a 504 plan to her while she was still a living breathing student). So yes, I'm not surprised you're running into this type of issue.

A few things to consider: 1) Who is running the specific programs you're trying to send your dds too? The power of bringing in the ADA quotes comes when you are dealing with an institution that receives Federal funding - if they are receiving Federal funding then yes, they *have* to comply with the ADA. I think (and I'm not a lawyer or even well-versed on this, so I could be entirely wrong), that if it's a private business that's not receiving Federal funding, there is more freedom for the business in saying yay or nay to who attends and participates in academic programs. The size of a business can also make a difference. So.. be sure you're absolutely certain that the program must conform to the ADA and can't deny your dds attend.

2) Consider that the people who put up these brick walls are also the people who are planning and running the program you're trying to get your dds into. I spent a lot of time and effort advocating for my dd at her first school during K and 1st grade, only to be shocked to the core when I found out through an accidental remark of a parent how a certain teacher *really* felt about food allergies (as in, didn't believe they were real and thought it was just a pushy parent thing). I also saw over time, that even though we had a plan that the school agreed on that should have kept my dd safe, if the staff didn't buy into feeling that it was necessary, it wasn't much of a plan. So - be aware that you can advocate like crazy, get your dds in, and then possibly be among people who either don't want them there or don't take their need for insulin seriously.

I'd also really question a camp that said you (parent) can't come in - why would they say that? Regardless of the reason?

Last suggestion - if you continue to run into this issue with gifted camps, consider trying science or art or camps that your dds are just generally interested in. We don't have gifted camps in our city, but my kids soaked up the other camp experiences, and there were often other gifted kids enrolled.

Best wishes,

polarbear