Thank you for writing in here—–I’m quite curious, may I ask how you came to write up the “Autism Reform Act” and how you determined each item? Is there a website for the Office of Advocacy for Autistic Children? I would appreciate finding out more about this organization.

Certainly the issue of restraints is a serious concern; I’ve written a number of posts concerning these (such as this one). Thanks very much for your efforts.

Here’s the post:
2.
Door is OPEN- 5th Highest Overall Rated Idea for Change in America..
Posted by: “Michael E. Robinson, Sr.” peace4kids@yahoo.com peace4kids
Thu Dec 25, 2008 11:54 pm (PST)
Listmembers,

Throughout the last few weeks we have had several what I would
call ’shocking’ reports regarding the treatment of children with
disabilities and as well the treatment and retaliation of those who
try to help them. The CNN reports of time out rooms and cells should
concern EVERY parent regardless of whether their child is disabled or
not.. if for you have not looked at this site I believe you should,
however awful it may be it is the horrifying truth for the children in
our schools…regardles s of disability or none.
http://www.cnn. com/2008/ US/12/17/ seclusion. rooms/index. html
After viewing the article and seeing the video of the father of
the child from GA. that died in one recently, it is not a ‘fun’
subject to discuss – but discussion must take place and action after such.
The other very shocking news came to you in a post recently..
Regarding an Arizona Advocate that is facing 150 plus years prison in
a retalitory action against him due to the fact he was a ‘winning’
advocate with not only a record of due process wins. The arresting of
him with guns drawn is simply wrong. Haven’t we had enough ?
So, many parents and those on the Autism Spectrum have responded
rallying the ” Autism Reform Act of 2009 ” , And relief for those that
have been or are in Special Education or Disabled “.
This is not a replacement for the ADA but I personally think the “ARA”
should be an ACT that is reauthorized and continued after it has been
made acceptable to the President Elect and the Legislative branch that
will ratify and fund it.
THE ACT IS CURRENTLY IN 5TH PLACE IN THE NATION FOR ALL IDEA’S FOR
CHANGE IN AMERICA. In the ‘Education’ category it is 1st by almost 600
votes and almost 800 votes over the 3rd place idea that will also make
it to the final round.
We have made a statement as not only parents but also those on the
spectrum or with other disabilities. I believe strongly that the
‘force’ of the movement of parents must at some point, and I believe
the time is NOW, join together with the large population of those on
the spectrum or disabled that are Adults. This is for them, and if we
are going to speak for them they not only deserve a ’say’ in it, they
are needed for input that has already been crucial in revising the
proposal in ways I believe will be more acceptable to the
President-Elect and to the entire community that needs to merge..those
with disabilities on the spectrum or not, and those that are parents
of disabled children and are going through the education process. By
looking at the ‘finished product’ or person that has gone through
special education we get insight that we could only get from someone
that has actually been in the students chair, been denied something
unfairly as an adult such as SSI, being put on waiting lists for
Medicaid waivers, and so on. How long should we just sit here and say
” I don’t like this part” ” We can’t fund this ” (We’ve funded
bailouts totaling a trillion plus when you include the fannie/freddie
and we’ve also spent just as much/more on war) ” This should be
changed ” (well email me or respond with some constructive input for a
change or addition to the the ACT) “I just don’t have time to read
this post or concern myself with this
because….. …” (Our children and those that are older kids of ours
come first, take the few moments and do what you can to make the
difference.. Please) ” I don’t think the Aspies and others that are
adults can make these kind of decisions ” ( Believe me they can and
already have !)
So lets open our minds to the possibility of real ” Change ” , the
kind that counts. Regardless of what political party we follow,
regardless of what beliefs we have that are different ” I like the
GFCF diet ” ” I think HBOT is the way to go ” ” I think chelation is
all that works ” ” All kids need a 1:1 aide (this may be close to very
true for the younger kids on the spectrum and with other disabilities) “.
REGARDLESS.. . we must join together and forget about indifferent
feelings on subjects that will result in absolutely NO funding unless
we come together in a strong accord and make something happen.
This is not ‘my’ act.. as I’ve said before it belongs to the people,
made by the people, and for the people. I’m just a concerned dad with
a big mouth that types fast (but I can say enough is enough, time for
change NOW) ! No more kids need to die, no more adults on waiting
lists due to underfunding the Medicaid Waiver program, no more kids in
unsafe inappropriate environment pulling out their hair as the one
young girl did in a time out room…. The bottom line is we have an
OPEN DOOR now.. we have attention and need to go after it. Please
email me offlist at Peace4kids@. .. and let me know your input. It all
counts.. some are major ideas and some are compiled with ‘like’ ideas,
all of which will appear in some shape or form on the final proposal.
The input I am now getting from the Adults on the spectrum is quite
large. We have several ‘groups’ ….and in the last 12 years I have
not seen unity at all within them.. lets as parents be patient and
listen to our kids…let them give input..as Adults they have valuable
information. .And those on the spectrum or with other disabilities. .
try to keep an open mind as far as the possibility we now have as the
5th highest rated idea in America and Number 1 in Education a basic
‘given’. Those who haven’t supported.. please take the time to
register and support – your input matters.
http://www.change. org/ideas/ view/accept_ and_sign_ the_autism_ reform_act_ o\
f_2009
Michael E. Robinson, Sr.
The Office of Advocacy for Autistic Children(soon to be Individuals) .

Popular or no, and I believe it was written from good intention–as written, and in some parts, proposed–this is a pretty half-baked template that, as noted, suffers from a need for review of existent regulation and myopia (since some of these matters are larger than “autism”).

Despite the line about politicians being a joke–there are limits. Legislatively I doubt that this bad boy, as is, would make it beyond a first reading if it even saw the light of day as a written bill. Right now it’s just somebody’s idea list.

Conversely, it’s possible for anyone to compose and submit their own idea to change.gov.

In fact, Kristina and I seem to be in agreement on about 99% of the “act’s” theoretical provisions – and have exactly the same questions for Mr. Robinson.

Frustratingly (to me, at least), his “act” has already drawn more than 1,000 “yea” votes on the Change.org site…

Best,

Lisa Rudy (autism.about.com)