Mike,
I've been fighting for autism for 35 years, the past 15 of which has been in an intense, time consumming and volunteer way on the net. Has anyone listened to me? The government and media listen very well to the parents but the past ten years of that seems to be making things worse. In my county special ed is getting mucn worse yet we have lots of parents involved in this county and it used to have a reputation for being one of the best.
As I understand this autism act we are now in a phase where the pros are supposed to take a sober look at what needs to be done and how best to use the money. They seem to want to imporve services which is what they should do. They also seem to adhere to a more scientific approach to research instead of chasing ghosts of biomedicals which the parents seem to want to do.
You can shine on the past but remember there have been many good parents AND pros who worked together for decades and made some major improvements in the law. The job where I did my FC project used a state of the art program monitored by the feds called ICF (Intermediate Care Facility). The regulations of ICF were great but hard to satisfy in practice. That's were we should be concentrating. It may need a whole health care systems overhaul and with universal health care that might be coming down the pike soon. Us autism advocates could be a powerful part of that and it would not only be beneficial for us but for the whole health care system. I have worked in most areas of health care and I know autims is a critical part of the system that can strenghten the whole thing if approached and structured right. I have talked here in years past about this restructuring and how it could serve
both autism and the larger system. Pros on a national level are aware of this need and have a plan but aren't aware of how autism may fit in.
Autism is the most difficult disability to care for and treat. I saw great improvements in my 35 years in the field and we did make it to the promise land by the early Ninieties and then lost it. I spent over ten years out here proving I knew what the promised land was and how to get back to it yet I'm treated and used as if I were a no nothing stranger.
At some point we need some leadership. In autism it's all a bunch of individuals who think they know best and don't listen to anyone else. Considering the conflicting theories and advice I guess that is understandable, but these advocacies of the parents that won the day the past 10-15 years have actually made things worse and have alienated the public. I told the very same parents who were leading this effort 12 years ago that this would happen and why. I'm not on board for another 12 years.
Tom
--- On Fri, 12/19/08, Michael E. Robinson, Sr. <peace4kids@...> wrote: From: Michael E. Robinson, Sr. <peace4kids@...> |
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