Michael Robinson the founder of The Office for Advocacy has proposed the Autism Reform Act of 2009 through the website change.org, so far the idea only has a little over 900 votes. While I don’t agree with a lot of the bill – I think its a great start, however I am going to submit my own idea (if I can figure out how)The Autism Reform Bill of 2009 as shown on change.org: (my thoughts are in italics)
- There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism
Who would this office be held accountable too? Would politicians, or experts be appointed to this office? How about Autistic people? - The use of Time Out Rooms, Corporal punishments, Restraints, and the high amount of Abuse must be monitored with severe penalties to states and fines or conviction of those that break such a REFORM Law.
100% Agree. - School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding.
While this idea is good in theory, these offices tend to end up being just one person who knows nothing about the office they hold. See most school districts special education offices as proof. - 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. - 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. - Protection and Advocacy MUST be funded properly to allow parents that need help get it without any more then a 15 day waiting period.
What about Autistic Individuals who need help advocating? - Grants for research, education, and non profit organizations for those with Autism Spectrum Disorders must be made in the amount of 5 billion dollars.
I believe these funds should also be distributed by a committee of those with autism as they know best where the money would go, not a politician. - Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement.
I agree 100%, however accountability for this procedure should also be put in place. There are many parents who would sadly milk this. - Behavior Intervention Plans must accompany all Individual Education Plans.
I don’t like the idea of Behavior Intervention Plans for Autistic Individuals, instead I feel that those behaviors should be explored more with school encouragement as they could be media for communicating thoughts and ideas. - Insurance companies must make available all resources for children and adults with Autism Spectrum Disorders including but not limited to any items deemed necessary by the physician for the treatment of metal toxicities and any other therapeutic orders their physician may order.
Ummm no. Autism is not caused by metal toxides, its a scientifically proven fact. - The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers.
Sounds good to me. - This Reform Act must be ‘open’ for additions as needed and create a 12 parent persons Autistic Indivual panel to propose such additions.
Fixed it for ya.
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{ 10 comments… read them below or add one }
Hey Robinson,
I’m Zach – not Sammy. Sorry you don’t understand that concept.
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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.
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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!
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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
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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) .
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“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.
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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.
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