I read this article yesterday (thanks, Mary Leonhardt!) about developing standardized testing for the kids like Janey. I hadn't really understood how the whole No Child Left Behind bit affected kids with severe intellectual disabilities like Janey. The article explained that it's allowable for 1% of students to be tested in an alternative way---to not have to take the regular state tests, which here in Massachusetts are called the MCAS. Most students with special needs do have to take the tests---the article estimates that only 10% of special needs students are in the overall 1% that don't have to take the tests. I don't know officially that Janey is in that 1%, but I am quite sure she will be. The article discusses a program being developed to modify the regular tests so even that 1% can be tested.
What do I think of this? Well, my first impulse was that it's crazy. No matter how much you modify a math test that has concepts on it like algebra or a English test that has you analyze a poem, Janey is not going to get it. And more importantly, it's a waste of everyone's time and money to work on her to get it. If you put hour upon hour upon hour into it, you might get her to somehow point to a picture relating to what the poem is about with some degree of accuracy, or parrot back an answer. And what in the world is the good of that? That is time and money and energy that could have been spent teaching Janey something she COULD learn---self-help skills, letters, iPad use, things like that. My second impulse is that this is another example of people not really getting low functioning autism. There is a larger gap between a child like Janey and some children I know with Down syndrome or higher functioning autism than there is between those children and "typical" children. I completely believe in including kids that learn differently or more slowly, in having them take the tests with accommodations. But learning differently or more slowly is very different than not being really able to learn the material at all, or learn it in a way that's going to make a difference long term.
Here's an example. I have terrible handwriting. I mean---terrible to the extent of being unreadable. I always have, although it's gotten worse in this age of keyboards. Now say there was a test back in my day that required writing an essay. It would be crazy to say I shouldn't take the test because my writing isn't readable. That is a case where an accommodation makes complete sense. I could use a keyboard, or dictate the test, or be given a lot of extra time to try very hard to print the letters in a readable way. And the result would be meaningful. It would test my writing ability, without having a disability stand in the way. (and I'm quite sure in today's world I would have a diagnosis for my inability to write legibly, or to keep an organized and tidy desk or locker) I would be able to move forward with writing, and use it in my life. But let's say it was Janey instead. Janey can't read. She can't write. She doesn't consistently know her letters. She doesn't know what an essay is. She can't in any meaningful way at all even understand what would be expected for a test like this. Now, I'm sure you could figure out a way to somehow completely modify the test so she could do LOOK like she was somehow being tested. You could read her a story and have her point to pictures. That might look like something useful on paper, but in reality, is it? Does the test result mean anything? Does it do anything but satisfy some sort of quota or make a state look good on paper? I would say---no. So yes, accommodate if there is something standing in the way of someone showing their skills. But don't "accommodate" if the skill simply isn't there, and never will be, or won't be unless some huge intermediary steps are taught first.
This reminds me of all the times I've been failed by parenting advice. Janey and kids like her, the other 1%, don't fit into the regular rules, the regular plans. Accepting that, and doing the best we can for kids like her without forcing them to being tested in meaningless ways, is how she will move forward.