Comments on: Autism Reform Bill of 2009

By: Tommy-Joe Stiner Sr

Tommy-Joe Stiner Sr — Thu, 24 Dec 2009 07:20:12 +0000

by the way i think it is awesome what you have done with the rights of children.. Tom

By: Tommy-Joe Stiner Sr

Tommy-Joe Stiner Sr — Thu, 24 Dec 2009 07:19:13 +0000

Michael E. Robinson, Sr
I have read alot here about your beliefs and proud of a man that will speak out to help and touch others.. This is Tom Karens Brother.
I guess I dont get where you can help me? I am 100% upper exstrity disabled, have PSDD and a blinding disease called Glacomba along with many other factors.. Im Not sure what all has been told to you about me and the life threatning issues that I face on a daily basis. Or just how you can help me.. God is the hand that leads me but the trials are a heavy burden on many not just me with the issue at hand.. If we could chat I would explain it the best I can I get confussed easy and have difficultly in holding emotions with the issues at hand, If ever a person has lost as much and been punished as much Id like to meet them, I honestly am not guilty nor was I ever guilty of any wrong doings with these cases, There is so much to say and feel that its hard to write it all. in a short way infact I am not sure I would even know how.. The system that I believe in has abused and sought me out leaving innocents to bear the pain.. Im not a man that can bear pain in this way.. God seemed to have given me this heart that lets me help all even after being hurt or abused used .. Its to much to explain.. I appreciate all the help I can get, Ill never make it behind bars I cant Ive done nothing wrong nothing how do you prove something never happened? its all but impossible when from birth the card have been delt against you.. My cell is 509 389 1109 Thanks tom
The jail abused me and degarded me in colville and in spokane the colvile prosicuter refussed to even look into my ex wife aiming and then firing a gun at me,, her hear say was greater than the witness that is fighting in a war for us. because i get confussed makes me a pervert? Put in a cell alone becasue of whom i am begging for calls writing notes to put in front of the camera so i can get help. when i do i wake up to find myself being held down on a cold floor that was not even washed of the blood from a previous jailed person being called a prevert and making me show my chest to other officers becasue of whom i am.. Michael ther is so much pain and so much wrong.. I can only type a short time without pain.. so I will have to close from here please call Im not sure where you are or the time zone your in please forgive my spelling Tom

By: Michael E. Robinson, Sr.

Michael E. Robinson, Sr. — Sun, 11 Jan 2009 08:13:49 +0000

I am happy to see that we have alot being done in the midst of all of this. National attention has been gained and Protection and Advocacy will release a report requesting a Ban on timeout/seclusion rooms and illegal restraint. There have been many revisions made and the actual legislation is in draft and can be viewed. Email me at [email address removed - we don't publish emails on here] . Samuel, I’m glad we are able to communicate in email and gain input from it. You are a true strong voice for the community.
Much of what is in the idea is not in the ‘Idea’ that was posted. Understandably there is not enough room on the Idea’s site to post that much.
I have compiled all of the input from everyone and have made substantial changes and do not give preference to any single modality of educational approach.
No specifice treatments are mentioned. Testing for allergins or toxins in the system should be part of the diagnosis process as it could lead to a closer number of those that are actually autistic vs. having Mercury Poisoning or a Wheat Gluten allergy.
I am a strong supporter of Self Advocacy as well as non parent Advocacy. All should have a chance and a say in what’s going on around the Globe..not just this nation. In this Nation we all, in my opinion, should unite. But this won’t happen.
As I believe the time out issue will be resolved in a Ban shortly after the report that comes in on Tuesday, I think now is the time to move forward on some of the other issues. Please feel free to email me at the above yahoo address and give input. Samuel has given some great input and I would be very happy to get more.
Thank you,
Michael E. Robinson, Sr.

By: AspieWeb Admin

AspieWeb Admin — Sun, 04 Jan 2009 09:31:46 +0000

Hey Robinson,

I’m Zach – not Sammy. Sorry you don’t understand that concept.

By: Michael E. Robinson, Sr.

Michael E. Robinson, Sr. — Sun, 04 Jan 2009 09:05:28 +0000

Samuel,
I do believe we had comments made towards each other and both accepted apologies so I think the comment you have up is outdated. All input was compiled to compromise and give all input based on the emails and posts made that we were aware of. It was used and is the basis for the actual Legislative Request – which in appearance must look much different then an ‘Idea’ which can only allow a certain amount of space.
The items listed were the proposed resolutions and I do want you to know that yours and others input was used to change much of what is in the proposed resolutions. No Modalities are specifically mentioned and a few more items have been addressed – some distinct issues brought up by adults on the spectrum are addressed and important to me. I hope all of us can embrace the fact that Autism Reform itself did finish in the 1st position for Education Ideas and was 5th overall – once again the Idea’s will be voted on at change.org and The Autism Reform Act will still appear as an Idea – Its rather bunched up because of the 2000 max. characters but it includes most of what is in the proposed Presidential Act.
I have given out the rough draft of this and will have a final brushed up edition posted on the net in the next few days.
I believe that there is common ground that all that have different ideas can stand upon – we need Reform. If we can gain the support to get such an Act passed there is much that can be amended to it. The oversight committee for example has been changed to 15 persons including 5 on the Spectrum, 5 parents of those on the Spectrum, and 5 professionals in the field of research, education, or therapy. I think that what some did not understand is that this could not be ‘pieced together’ changing things constantly as each individual wants it to be – I believe the final draft will satisfy all that do want reform and does include reform in the area’s of S.S.I. coverage and waiting periods, Medicaid Waiver waiting lists, and other services for adults.
Protection and Advocacy is a mandate already for all states – it’s just underfunded. That is not just for parents seeking help with their school district it is as well for adults with any disability that possibly need an attorney from there to represent you/them. Parents have a Plethora of wants and needs and those had to be addressed with equal weight as well. So if we could all get along and not jump to conclusions about each other I believe we can move forward and gain momentum with the change.org promotion and either way still have a proposal to submit – which will be done so by my Asst. who has posted on here already.
I will not hand this forward, an individual on the Spectrum will. I may push for it’s passage of course. I believe that we will make a difference whether we prevail on the change.org site or not – we’ve already claimed a victory in the are of Education Idea’s.
One thing is for sure.. at least most of us want some type of reform.
Michael E. Robinson, Sr.

By: Pyle Bopkas

Pyle Bopkas — Thu, 01 Jan 2009 23:50:15 +0000

I am Michael Robinson’s assistant and I do take your input because I am personally autistic and working to be ambassador for the autism community.

If you guy got criticism, we can have it and review it and make it possible to fit it.

Lies and rumours has infiltrated in the autism community, corrupting information and data that are there to help law maker and researcher.

We must sort it through time and effort to do what right!

By: Samuel Sandeen (Aranittara)

Samuel Sandeen (Aranittara) — Tue, 30 Dec 2008 12:28:22 +0000

He doesn’t want our input I’ve done nothing but offer what I believed to be constructive comments and attempt to reach a good median between the perspective of the parents and the Autistic adults.
At first he humored me as far as I can tell then when he realized I wasn’t going to stop trying to help him fix his bill he resorted to using my action of creating a google doc of the bill anyone can edit as an excuse to dismiss me as a felon and a pirate

By: Michael E. Robinson, Sr.

Michael E. Robinson, Sr. — Fri, 26 Dec 2008 12:58:26 +0000

Although there are many things that will need to be revised to fit the needs of all… including adults on the spectrum. Please keep in mind while trying to satisfy the wants of all the final revision will include needs for children and for adults.. so your input is very much needed. Here is the posting that went out to parents.. Thank you,
Michael E. Robinson, Sr.
The Office of Advocacy for Autistic Children

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) .

By: Cris

Cris — Mon, 22 Dec 2008 23:01:40 +0000

“Insurance companies MUST provide the Early Interventions such as ABA Discreet Trial at no cost to parents.
You can’t intervene with Autism, its how your born. However I feel more therapies should be covered by insurance companies.”

I think you may be talking about the viewpoint of Aspergers. When a child has Autism not Aspergers, early int and aba are a must. However I would have liked to see DIR Floortime added – much more “human” intervention that is based on relashionships and in my perspective will help the children develop their social interactions and comunication.

By: CS

CS — Sun, 21 Dec 2008 21:29:04 +0000

4. Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY.
I think this would further slow down due process – an already slow process, instead make it so they have to be federally certified.

The original idea is better than your change. What happens in due process is that typically the process officer is a member of the same union and is a former teacher that knows the school system employs very well and is more concerned with remaining friends with the various staff at the school. Much better to have someone not employed by the state.