Autism Legislation: What should it include?
December 21, 2008 by Kristina Chew, PhD
Filed under Health
You could call 2008 a year of autism legislation, with bills proposed and (in Arizona, Connecticut, Florida, Louisiana, Pennsylvania, South Carolina and Texas) passed for insurance coverage for children with autism (of varying ages; for instance, Texas’ House Bill 1919 calls for coverage for autistic children between two and six; efforts are being made to pass House Bill 451, to require certain insurance plans coverage to autistic individuals up to age 18). Via the National Council of State Legislatures, you can access the NCSL Autism Legislation Database, which provides information about legislation in different states. Autism Bulletin also has a map of autism legislation, and here are various posts I’ve written on legislation concerning autism and disabilities. Military families are lobbying to get treatment for their autistic children under the extended care arm of the federal healthcare program TRICARE, as noted in today’s US News and World Report.
But what besides health insurance for autism treatment (which tends to be for Applied Behavior Analysis, or ABA), would you like to see in autism legislation?
This week, the Autistic Self-Advocacy Network has been invited to give input to the Office of President-elect Obama at two meetings relating to disability policy. The first meeting will focus specifically on autism policy issues and the second on health care policy from the disability perspective. ASAN and other disability organizations will be present, and you can email ASAN’s president, Ari Ne’eman, with your concerns and ideas.
Over at Change.org’s Ideas for Change for America page, the top-ranked idea in the education category is about the “Autism Reform Act of 2009.” This proposed Act was posted by Michael Robinson of Wahiawa, HI and from its first sentence, suggests an air of more than emergency:
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:
with the 12 points of the “Autism Reform Act” following. Lisa Jo Rudy has offered commentary on this act over at About.com and I’m borrowing her format, quoting the text of the Act and including my comments in italics:
1.) There must not just be one person but an ENTIRE U.S. OFFICE OF COMPLIANCE for Educating Children with Autism. Why “compliance” in particular for this office? Where has (has it?) such an office ever been mentioned before?
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. Ok, but I’d suggest that the use of these—certainly corporal punishment and restraints—should not be allowed at all. There are certainly too many cases of abuse, physical and otherwise, that get reported involving autistic persons and much more needs to be done to promote and train staff in other practices.
3.) School Districts/States must each have an ” Office of Autism Education Compliance or be subject to loss of Federal Funding. Again, “compliance” needs to be explained. And what is meant by “autism education”?
4.) Due Process Hearing Officers must NOT be employees of the state and shall be employed by the Federal Government ONLY. Lisa expressed some puzzlement at this. I’m also wondering at the emphasis in this Act on who is employed by whom and, again, on compliance.
5.) Insurance companies MUST provide the Early Interventions such as ABA Discreet [sic] Trial at no cost to parents. As noted above, while early intervention is needed, autistic children often need therapies and services for many more years. Further, ABA/Discrete Trial Teaching is only one type of teaching for autistic individuals and others also need to be considered, according to each individual’s needs.
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. Certainly parents with a just-diagnosed child or with a child having many difficulties at school need their concerns addressed as quickly as possible. Who would such “protection” and “advocacy” come from?
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.Why this particular figure of mondy and what kinds of grants are being called for here>
8.) Relief for parents who have paid out of pocket to educate their children must be made swiftly with 100% reimbursement. Who is this reimubursement to come from and on what grounds? Only for educational services? How much of this “relief” will be compensated? (And there may be some concerns in the wake of stories such as this.)
9.) Behavior Intervention Plans must accompany all Individual Education Plans.My son’s IEPs have always included such Behavior Intervention Plans (BIP)—-parents have the right to ask for such in a child’s IEP, and to make sure that the BIP is created under IDEA regulations.
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 [sic]orders their physician may order. Interesting to find mention of “metal toxicities” and of biomedical/alternative medicine theories about autism in the Act. Is there an intent to try to have such treatments (which are not supported by the scientific evidence) covered by insurance?
11.) The Autism Reform Act shall consider all Autism Spectrum Disorders including Aspergers. Ok; the possible revisions to the DSM might also be taken into account.
12.) This Reform Act must be ‘open’ for additions as needed and create a 12 parent panel to propose such additions.Definitely seems essential to keep this Act as “live” and “in process” as possible—-why as panel of 12 parents? Who would choose these parents? What about teachers, scientists, and others?
What you think about the “Autism Reform Act”—–again, what do you think legislation about autism should include?
Thanks for the link. I’m also glad you mentioned the NSCL’s database. I wasn’t aware of that and am glad to know it is out there.
I see a world of hurt. That is my most succinct and gut response, albeit from the gut of someone who has been on the other side of special education and medical insurance for 30 years.
Your post is ….vast, Kristina. You cover state and federal regulation and proposed law. I would better understand if I could see it in smaller parts, and more detail of each part.
If I was a parent of a child with autism, this kind of post would throw me into a tizzy for trying to understand its meaning for me.
I don’t intend criticism. Your blog is thorough for covering issues related to autism, and for that, I’m sure many benefit.
I’ll just end with one reason for my first statement: All the regulation up to now has not been satisfactory.
Great post.
About the about.com piece, I really wonder where she sees any of this benefiting autistic adults- who are, after all, also increasing in number as kids DO grow up.
Why should that panel be made of parents? Why not autistic individuals as well? And why 12?
@Cait,
There need to be autistic individuals on the boards of any and all autism organizations, I think more and more—-at 11 1/2, my son is fast becoming an adult and the need for such services will be the case for many who are kids today.
@Barbara, I tend to go for the local to, and for things that can make an actual, however small and simple change. Some 920+ people on Change.org have indicated an interest in that “Autism Reform Act” and it seems like there’s much more need for discussion of what it’s proposing, or of what some other act might propose. But yes, the smaller parts—that’s where I think, I hop, we can start and make changes that directly affect individuals and families.
In an effort to be brief, I may have been unclear. I apologize. I see now that you did address change.org in detail, and I should spend more time trying to understand that portion of the post. Frankly, I was overwhelmed by the first 3 paragraphs.
“But what besides health insurance for autism treatment (which tends to be for Applied Behavior Analysis, or ABA), would you like to see in autism legislation?”
I might do 3 posts to respond to that one question.
I have to wonder about the points that insist that insurance cover ABA and metal detox. First of all there are 47 million people in the U.S. that are not covered by any health insurance. That number grows on a daily basis as companies lay off more and more workers. Is someone proposing a bill that leaves them out? If something is to be done then let us do it either through Medicaid or Medicare so that it will apply to all.
Re: #10, are treatments for heavy metal poisoning specifically excluded from many insurance packages? I’m looking through mine and the only place I find heavy metal mentioned is that removal of lead based paint is covered by the flex account, which means it is OK by the IRS to count it as a health expense. Maybe it gets buried outside my policy and in the operating policies of the insurance company but surely heavy metal poisoning [shown by sound lab testing procedures] is normally covered? Like you say all that sounds like is trying to do is an end run around requiring demonstration of need for the procedure?
As for the parts about who is employed by whom and compliance, that looks like reads like standard bureaucratic checks and balances boilerplate. Somewhat required because of the nature of the interactions of the different levels government within the Republic.
On ABA Discrete Trial, it does word it open-ended with the “such as”. Yes it’s annoying that ABA is the only one to get billing. *shrug* Chalk it up to name recognition?
@Another Voice
That probably depends somewhat on how more generalized medical coverage develops. :/ That’s piece of the puzzle is still a ways out.
@ Tyler, I don’t think the reference to metal toxicity had to do with lead based paints, I think mercury would be the target in this case.
Also, Medicaid and Medicare are programs that already cover people with disabilities and are operational. It would seem more expeditious to modify an existing program to cover all people, than to leave ten of millions behind.
That is just removal of paint from your house, not the child. I assume that it is included to make it clear that that is also a valid ‘medical’ expense even though it doesn’t include.
Is the choke-point for insurance coverage that there is no “FDA approved” treatment for ethyl- or methylmercury poisoning so even if you did truly have acute mercury poisoning from either those that it wouldn’t be covered by most insurance plans because DSMA would be categorized as “experimental”, or “off-label” or whatever the term, for organic mercury poisoning? (as opposed to treating inorganic mercury poisoning which the FDA has officially given approval for using DSMA)
Grrrr…
I assume that it is included to make it clear that that is also a valid ‘medical’ expense even though it doesn’t involve actions directly affecting the [child] patient’s body.
I have known families who’ve sought to have insurance pay for biomedical treatments; not sure which ones exactly. Since a connection between heavy metal toxicity and autism hasn’t been proven, getting such treatment covered by insurance seems unlikely, and the mention of it in the “Act” seems to detract from its general educational tone.
ABA has helped my son…..and sometimes not helped. The best teachers and therapists we’ve had have been quite willing to try different things and think outside the ABA box, so to speak.
@Barbara, I could probably do a couple more posts on this particular topic too…………
I think a lot of what is mentioned here could apply to other disabilities, as well. For example, having each school district form an Office of Autism Compliance would mean that there is more oversight of IEP’s for kids with ASDs than for kids on IEP’s for other reasons. Why is that fair? Certainly, all children diagnosed with a disability are entitled to equal due process. This is only one example but I see this as unfair to provide all types of extra benefits to those with ASDs over those with other disabilities. Legislation like the IDEA is written to include all disabled children.
Found this about the Autism Legislation Project, founded in 2004 by the father of an autistic child in Illinois.
Another problem with the bill is that it’s practically an invitation for insurance companies to drop families with autistic children. Bills requiring insurance aren’t really that useful until: a) Everyone has insurance and b) insurance companies can’t discriminate based on “pre-existing conditions.” Fortunately, Obama has identified b as a priority.
This does speak to the problematic and narrow focus of this “bill.” It makes no sense to provide 100% reimbursement for anything and everything related to “autism treatment” when so many Americans, even those with good insurance, have to pay for truly life-sustaining care. Nor would this help autistic children (or adults–another major omission) who aren’t insured.
This bill stands about a 0% of being passed in present form, not least because it seems to confer privileges to families with autistic children that aren’t available to anyone else regardless of disabilities, medical conditions, etc. The “autism community” really ought to follow ASAN’s lead in making common cause with others who have shared interests.
It also seems to me that this bill is trying to standardize autism “treatment” in some areas, such as by mandating “behavior interventions,” while also leaving the door open for parents to spend however much they like on unproven “alternative” treatments. It seems to me as though this bill is favoring certain types of autism “treatment”–while remaining relatively silent on the issues of inclusion and *accommodation.* There needs to be some ethical and scientific accountability here.
Just to be sure folks are clear – the 12-point “act” on which Kristina commented came NOT from me (Lisa Rudy) but from a man by the name of Robinson, who posted it at Change.org and has been working hard to draw attention to it.
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)
I wouldn’t worry about this too much.
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.
Sorry.
change.org
This is 12/26/08’s post to parents in over 150 yahoo groups.a total of over 200,000 listmembers..although some not active.. We have much to discuss for a final revision before this is presented.. we are not only 1st in Education..by about 700 votes.. we are the number 5 in the nation of all idea’s.. so that puts us in the final round in 5th place out of the top 10 ideas..we shall hold that spot or gain more ground….. Please read what was posted today..and please give your input… negative or abusive remarks will not be accepted.. make them if you will but you won’t be helping anyone except you unflated ego… we need to help the kids.. and we need to make sure adults on the spectrum are also getting the help they need.. if we can bailout banks/finance/insurance co’s to the tune of 750 bil. and can spent another trillion on a war.. then we can spend 5 bil on what the kids need and then authorize whatever else may be needed to continue this action.
Michael E. Robinson, Sr.
The Office of Advocacy for Autistic Children
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) .
@Michael E. Robinson, Dr.
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.
What exactly is the “Office of Advocacy”, as his signature reads: Michael Robinson (Founder The Office of Advocacy)? From my reading on the change.org site, the listing [Autism Reform "Act"?] reads like a laundry list of what Mr Robinson desires for his own child, along with some kind of position designed for himself.
Legislation needs to be introduced that creates an ongoing working relationship between insurance companies and public schools. Board Certified Behavior Analyst’s who provide services via an insurance provider (Medicaid, Tricare, Magellan Healthcare etc) need to have access to their clients during school hours. The children, teachers, para-professionals would all benefit greatly from the extra assistance and expertise BCBA’s and BCaBA’s could provide. Having insurance companies foot the bill for services is great, but if providers only have access to working with their clients during after school hours really puts limitations on treatment and overall treatment success.