Change.org is sponsoring a contest focused on ideas for political change. Within the "Education" category, the #1 idea is a series of demands for change entitled the Autism Reform Act of 2009. Sponsored by Michael Robinson of Wahiawa, HI, the list of demands is long and diverse. So far, it has received over 900 votes.
The idea of such a reform act sounds terrific - in theory. Robinson's "act," however, while it includes some critically important ideas, also seems to me to be very shaky indeed in some areas. Here is Robinson's proposed "act" (along with my personal responses, in italics):
As a country we have watched Autism Spectrum Disorders grow in a devastating number. Over the last decade it has spiraled so quickly out of control that:In addition to the notes I offer above, I'd like to note that there are many other changes I'd like to see to the educational system as it relates to children with autism - none of which are included here. For example, there's no mention whatever of inclusion in any form; of vocational education; of differentiated instruction; of access to non-academic school programs such as music, art or sports. There's no mention of preparing children with autism for standardized testing (or of removing the requirement for standardized testing on the basis that individualized educational plans don't allow preparation). In short, most of the issues that concern me, relative to public education and autism, are not included in this particular list.
- 1.) There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism. Since I don't know what the office would be complying WITH, it's tough for me to support an office dedicated to such compliance. First, let's see a flexible set of national guidelines for autistic education - and THEN let's decide how to enforce them!
- 2.) 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. I absolutely agree!!
- 3.) School Districts/States must each have an " Office of Autism Education Compliance or be subject to loss of Federal Funding. I suppose the overall idea makes sense, depending upon how it's implemented, but the idea of punishing our children because the district or state fails to comply with a law sounds wrongheaded to me.
- 4.) Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY. I have no idea why this would be important - readers may know more about this than I do.
- 5.) Insurance companies MUST provide the Early Interventions such as ABA Discreet Trial (sic) at no cost to parents. Personally, I think discrete trials (sitting at a table and asking a child to perform a skill over and over again, and providing a reward when the skill is performed correctly) is an outmoded form of ABA. There are far more naturalistic and appropriate interventions available, even within ABA (not to mention many other effective forms of therapy which are specifically excluded here) - and I would vote against an act which insisted on implementing discrete trials with every child on the autism spectrum.
- 6.) Protection and Advocacy MUST be funded properly to allow parents that need help get it without any more then a 15 day waiting period. Absolutely agree!
- 7.) Grants for research, education, and non profit organizations for those with Autism Spectrum Disorders must be made in the amount of 5 billion dollars. Not sure where this number came from, and have no idea whether it's appropriate.
- 8.) Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement. This makes no sense at all to me. Parents choose to pay out of pocket in all kinds of amounts for all kinds of reasons. Sometimes, parental choices are perfectly reasonable, as are the costs. Just as often, parents spend huge sums based on their own ideas of appropriate treatment, which may or may not have any basis in research. How would a district determine which parental choices should be reimbursable?
- 9.) Behavior Intervention Plans must accompany all Individual Education Plans. I suppose this makes sense - couldn't hurt, but I am not sure why it's critically important for all children with autism.
- 10.) 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 theraputic orders their physician may order. This is a tricky item, because it doesn't state which types of physicians are covered (nor does it include practitioners who are not physicians). Some physicians recommend treatments which have not been fully researched; should those treatments also be reimbursed by insurance companies? If so, should the same options be open to all patients with every type of disorder? How much should insurance companies raise their rates on the basis of providing such wide-ranging availability of treatments?
- 11.) The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers. Sounds good.
- 12.) This Reform Act must be 'open' for additions as needed and create a 12 parent panel to propose such additions. Flexiblity always makes sense. But given the incredible controversies within the autism community, I am not at all sure that a 12-parent-panel is likely to be representative. And even if it were - why would the panel include parents, but NOT adults with autism, teachers, therapists, and others who have an equal if not greater stake in autistic education?
I do applaud Mr. Robinson's hard work - and his desire to see justice done on behalf of the autism community. And, of course, I applaud his desire to eradicate any form of corporal "behavior management" relative to any child! But if I were writing a reform act, it would look very different.
OK, I've taken my turn! Who's next in expressing their perspective's on Mr. Robinson's recommended reforms for the future?
If I were writing it, it would look very different as well. First, he combined eduacational with private insurances which are two different things. He is also mixing medical and educational- a doctor can not tell a school what to do and vice versa. Once it is allowed in one way, next thing you’ll have is schools suggesting and demanding medications for kids. I’m wondering where Michael Robinson is expecting all this funding to come from, as an example, #8. Parents will soon fork out for educational needs where as they didn’t before. This would include home schooling parents of which made that choice. There is a flaw in this. This could then include any parent who does not have a disabled child, and where that funding for reimbursement will come from is beyond me.
It all can look good on paper, however implementing it realistically is something else.
Hmm. Interesting. I can’t see what the problem might be with the ABA #5. It’s an embarrassing misspelling of discrete, but it just mentions a common and expensive form of ABA as an example. It just specifies that ABA should be insured–it’s hard to argue with that when insurance covers viagra. Seven and eight are over the top, clearly, but it would not be too hard to determine cases where the school district refused to pay for things they should have paid for–you could have some sort of a process where people could submit claims like in a class-action suit, where anything that can be documented within a certain set of parameters will be paid. That doesn’t give free rein to parents to bill schools for ridiculous things. It just returns the accountability.
I don’t know Mr. Robinson and this is the first I’ve heard of this. But I am new to the ASD community (my 6-year-old was recently diagnosed with AS after a long struggle to find a diagnosis), and I’m becoming more and more disheartened by the fractiousness of this community. I’m a member of another minority group, and I’ve seen this so many times before. When the things that oppress us seem so insurmountable, people often turn their anger into the community, and we start to fight among ourselves. I know there are real differences that we do need to work our way through–I’m not saying we should just stand by while an organization like Autism Speaks ignores the voices of autistic people, or we should all lobby for insurance coverage for chelation. But we do have many issues that we have in common, SPED compliance (meaning local and state level compliance with IDEA 2004 and section 504) being one of them. I have to think that even homeschoolers would benefit from true compliance and full funding, which could bring supports and services into homeschool homes and co-ops. I wish we could work on those issues instead of tearing each other’s ideas apart. Hearing that an autism-related initiative that is NOT exclusively focused on vaccine research is receiving attention on change.gov is the best news I’ve heard in a long time. I’m going on over there to lend my support to an idea with traction. The legislative process is long, many revisions are made during it, and this is a darned good start by my lights.
Mamacate – welcome to Autism.About.Com! I hope you’ll explore some of the many articles on the site, and perhaps meet up with some of the members of the forum.
Re Mr. Robinson’s proposed act, while I do agree that it’s great to see a broad-ranging set of ideas, it’s tough for me to see this particular set of ideas as having much in the way of legs. If I were going to vote for one of the ideas on the Change.org site’s set of options, I think I’d go for the one that asks for the end of “no child left behind.”
Best,
Lisa (autism guide)
Mr. Robinson’s embarrassment doesn’t stop at his misspelling of discrete. He also thinks ASDs are somehow related to metal toxicity.
The thing is # 10 is the motivation and credibility of this created ‘Autism reform act of 2009′. If a child or adult presented with dangerous levels of heavy metals, you could go to a hospital and have that treated. Happens every day. “….. deemed necessary by the physician for the treatment of metal toxicities and any other therapeutic orders their physician may order.” leaves a wide open check book of various treatments and soon you’ll find even more way out there treatments popping up over night. The thing is, Thimerosal was removed from childhood vaccines, so the need for # 10 really is unneeded.
Not every child is heavy metal poisoned. Not every child does well with ABA. My child is not heavy metal poisoned and progressed well with private speech and O.T and I know many other’s that did well too without ABA.
This may had started out well, however it is too restricting and one-sided as to what they are suggesting to be the over all reform.
Autism, Dyslexia, Attention Deficit Disorder are all potential pitfalls when a child doesn’t have proper child development. I think all families should be wary of this.
While I understand the critical comments regarding this ‘Idea’. However, This is not a complete proposal and I have requested in over 100 yahoo groups for input from parents to be sent to Peace4kids@yahoo.com – many changes shall be made and I’m sure an editor will pick up my grammatical errors ! We have already make some changes but it does not reflect itself on the Idea as that can not be edited. I will take all input and compile it accordingly to come out with a proposal that is of the people and for the people. The oversight panel of 12 parents has alredy been changed but as I stated it does not reflect on the Idea site. It shall be equally parents and those on the spectrum. Re: ABA I think it’s important to get beyond a spelling error and look at what has been scientifically proven and accepted. The wording states ‘Such As’ and not ONLY – that makes it open to the appropriate education for that individual. As far as the comment on embarrassment.. I am not – I am thankful for the large amount of support for those that understand that this is and idea that will be crafted into a proposed ACT – it is leading in Education with over 1300 votes.
This is not a personal achievement – its due to all those that have shown support and again, understanding that input is wanted to make this open to all. Regarding commingling insurance with education – that’s already done as of Jan. 2010 insurance companies that have been bailed out must provide the early interventions that parents pay for not because they choose to as stated by the writer of this incomplete article.. but because they are providing their child with a FAPE. Why should they be reimbursed ? Because they paid when the school district/state should have. They should be reimbursed. This does not effect me personally whatsoever – it effects those that have not been able to effectively get their district to comply with already written law.
Why should due process hearing officers not be employed by the same state that employees the teachers and others that will be witnesses. Calling that unbiased is just not true – it’s biased before it starts.
Regarding Metal Toxicity.. anything that interferes with the education of any child is
something that needs to be handled. The burden of this cost going to parents that are already strapped for money should stop.
We can go ahead and pay what WebMD estimates to be 9 billion ‘exta’ a year to educate the currently est. 560,000 children with ASD’s, or we can reform it and make sure our kids are treated as kids and not locked up in barbaric Time Out rooms, make sure the insurance companies we are ultimately paying actually insure and pay per the law passed with the Bailout of 750 Billion. Now why would we need 5 billion to start with ? This is a proposal for an ACT.. IDEA is an Act.. it gets reauthorized and funded just as this ACT shall be. Funds are needed for Education, Research, and for non profits that actually help the kids. It’s easy to pick an Idea apart or to say you don’t know one of 2 million parents of individuals with ASD’s, but I have been around since 1996 when I first founded The Office of Advocacy for Autistic Children and I’ve worked in almost every state (pro bono – I do not charge parents and I gain nothing monetarily from this). I hope you all have a pleasureful holiday.
Michael E. Robinson, Sr. The Office of Advocacy for Autistic Children
“Regarding Metal Toxicity.. anything that interferes with the education of any child is
something that needs to be handled. The burden of this cost going to parents that are already strapped for money should stop.”
Are you willing to take on fraudulent labs and quack practitioners who diagnose “metal toxicity” where none exists?
Tariq, the five-year-old boy that Dr. Kerry killed in Pennsylvania a few summer back, was initially diagnosed as aluminum toxic by an alternative practitioner in Naperville, IL. The boy was referred to Kerry, who chelated Tariq for lead poisoning, even though the boy’s blood lead levels did not indicated lead poisoning.
Kerry wasn’t a DAN! doctor when he killed Tariq. That honored only came later.
autism news beat says:
He (Mr Robinson) also thinks ASDs are somehow related to metal toxicity.
So adding 25 micrograms of mercury to an injection does or does not count as TOXIC?
AD research says 20ng/g of mercury is found in AD patients. Thats old people who lose their minds.
One 25 microgram vaccine will put 4ng/g of mercury compound into the infant and they get up to 10 vaccines at one time.
Perhaps Mr Robinson need not be embarrassed but what about regulators and government that allowed all this mercury and STILL do?
I think Mr. Robinson, whose agency by the way has no website or is listed as existing, needs to look at current foundations and build from there.
His effort in this is admired and he’s gotten votes because we as parents of kids with ASD tend to be desperate. But I can’t vote for something like this that actually appears to be making demands.
Federally funded DP hearing officers would be no different than state funded, the funds would come from the same pot. Also most of the educational “must” can be covered under IDEA entitlements.
Fundings has been addressed and will continue to be under the CAA and Clinton/Allard bills.
ABA is wondeful, as one intervention, but lets not put all our eggs into one basket. Also where the heck will all the BCBAs need to do the therapy come from? Who too will regulate that? Now there is such a shortage that we need to look at that as well. Qualified professionals in service provider fields that know ASD and how to meet indivdiual needs.
So though I think Mr. Robinson is well meaning, I’d not support this.
My suggestion to Mr. Robinson would be to look at needs, look at the foundation built, and scaffold your Reform Act from there.
Also using the term “must” is just so demanding. How about “required” instead?
Cg
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!
ATTENTION!
The link to Autism Reform Act of 2009 has been changed dues to diliberate attack effort from hackers and medical companies trying to disrupt the lobbying effort.
NEW LINK is
http://www.change.org/ideas/view/_the_autism_reform_act_of_2009_
Has anyone been able to confirm Mr. Robinson’s credentials? If you look up in the registries, his name is not listed as a Lobbyist. Its concerning in that what you do find when googling his name, is a lot of bad mouthing from him to the Neuro-Diverse crowd which makes little sense since he proposes that he doesn’t want to “cure” his child.
This sums up Michael Robinson perfectly. He’s a fraud and a scam artist who’s out to take money from desperate parents who don’t realise he’s actually a complete phony.
http://www.examiner.com/x-10560-Special-Needs-Kids-Examiner~y2010m3d4-Michael-E-Robinson-Sr-proves-the-case-it-is-important-to-verify-credentials
http://www.examiner.com/x-10560-Special-Needs-Kids-Examiner~y2010m3d4-Michael-E-Robinson-story-continues-part-2