It's Beginning to Look A Lot Like Fun*Run Time

It's ALREADY that time of year again: The ADAPT Fun*Run for Disability Rights is April 22nd 2012. Maryland's fundraising goal is $8,000 this year. Yes, that's right, $8,000

Donate $1! Donate $10! Donate $100! Donate $1,000! JUST DONATE so we can FREE OUR PEOPLE! I thank you very much for your support!

Wednesday, March 4, 2009

More on College & Disability

As I mentioned in my last post, I just came from the Leukemia & Lymphoma Society's Maryland Chapter annual Bright Horizons conference which was being held over in the union. The conference is held here every year and is all about childhood cancers. This year's focus was hospital to school transition. It was eh, but it was required for class. Maybe if I was already a child life specialist, or still enrolled in the child life track here, I would have cared more. I dunno. As an aside, I was able to get ahold of a free copy of the video Why Charlie Brown Why? (links to youtube, & there's a book too apparently) although the copy was a VHS and not a DVD.

First there was a Dr from Hopkins Children's who spoke (we are 25mins from there), then there was an educational lawyer who spoke, lastly a panel of all sorts of people (parents, a Hopkins child life specialist, etc). I was VERY excited that both the Dr & the lawyer referred to 'children with cancer and other disabilities.' YES!!! That's one of my big pet peeves--to get people to recognize that medical conditions, diseases, whatever you want to call them, are disabilities in their own right and have just as much impact on a child/family as say down syndrome. The Dr talked some about the cognitive impairments that can come as a side effect of chemo and the lawyer talked mostly about the need to get a child an IEP or a 504 plan who may not have previously been identified, and how to go about doing that, so it makes sense.

However, I had figured the conference would be more focused on younger children, elementary school age. That was not the case. They tried to cover all ages, although both sets of parents on the panel had young children. The lawyer did a good job of talking about high schoolers, accommodations such as an abbreviated school day for all ages, and even touched on the possible need to hire an educational consultant, mentioning ever so briefly on how they could help figure out the appropriate college setting, 2 year school vs 4 year etc.

Um, but in all the talk about the lasting cognitive impacts of cancer treatments and the pressing need to get educational assessments, she didn't mention that colleges have this weird rule that requires assessments to have been done w/in the last 3 years. So I had to mention it. I mentioned the fact that even if your kid has had a disability since they were 6 you still have to get it redone. I forgot to mention that DORS (VR) will give free testing to any Maryland resident ages 16+ free of charge period. That's how they determine eligibility for services, which is why it is always offered even if nothing else is. I believe that is the way it is in all states, although don't quote me on that. I also mentioned something that is particularly important to cancer patients, which is that I think at all schools w/appropriate medical documentation you can live on campus whether or not you are a full-time student. Nobody knows about that. The picture above is of a dorm here on campus. I won't go off on a tangent about what I think about those dorms.

I wish they had broken up into different rooms so that concerns could be addressed to different age groups and/or professionals. A parent of a 6yo might have no idea that they need to go out and get a nueropsyc now, and be thankful and go and do it, but they aren't going to remember that in 10 years they have to get it redone. And there was a school nurse there that was looking for advice about a 7th grader at her school who was diagnosed w/leukemia in Oct. They might have been able to have greater attendance if it was broken up and advertised that way. I thought it was low and would have been very pathetic looking if it wasn't half filled w/students. *sigh* at least they tried and made a pretty decent effort at it. Read yesterday's post. Not everybody does...


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