How to Have Your Disabled Kid Live Away at College
So a couple of days ago I posted a little video about how to get your kid with a disability to live on campus when they go to college. Here's one that I made about a presentation we did earlier this month at the Self Direction Summit in Saratoga, Springs. Self Direction is an innovative program that lets disabled people select and hire their own staff. It's not perfect nor is it a simple process but it works a lot better than relying on an agency. In our experience with the agencies, we got a lot of very strange helpers for Nick who often didn't show up. This was disastrous and kind of inexcusable. The agencies always told us they were sorry but they could do anything about it. Thanks!
We haven't had this problem with Self Direction, at least, not yet. But even Self Direction, it appears, is being threatened with Medicaid cuts. It's already stressful enough having a disability or being the parent of someone with a disability. On top of that, you have to constantly worry that whole house of cards can come down at any time.
That's what I mean when I say Ability Fierce is promoting an abilities revolution. We want a system that is judged on the quality of the service it provides and not on how much it costs. I saw someone point out the other day on Twitter that if you're an executive (or even an average worker) you don't have fill out lots of different forms to get your salary and then wait forever to finally get paid, or worse yet have the forms returned because you filled them out wrong. But that's the experience for many disabled people and it really gets in the way of living a productive life.
It also gets in the way of having a happy, healthy and productive society. We have to change the model not only because it's the right thing to do, but because we can. It's entirely doable and it will probably even cost less than the current system. The problem is there are a lot of entrenched interests and a lot of retrograde attitudes. There are a lot of people out there who resent disabled people getting the accommodations they need to participate in society just like anyone else. This has got to stop because there are really very few people pretending to be disabled in order to get benefits, no one really wants to be disabled. Another thing to remember is that no matter who you are, you could become disabled tomorrow and then that kind of talk would seem really, really stupid. Let's get smart, people. It's really the only solution, stupidity is killing us.