Fredericton NDP Sharon Scott-Levesque Supports ABA Coverage For Autism Under A New Canada Health Act Accord

Hello Harold,

I wish to thank you for your message regarding the inclusion of Applied Behaviour Analysis in Medicare. As you have noted, this is an issue affecting a growing number of Canadian families, and I understand the high costs of treatment are of great concern.

As you know the Canada Health Act requires provinces to cover medically necessary services without naming any particular procedure.  This means that the decision on what to cover has been left up to the provinces, creating a patchwork system where some provinces provide coverage for Applied Behavioural Analysis and others do not.

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I recognize that this disparity creates a hardship for families and myself and the NDP are interested in working with the provinces to see this disparity eliminated. This is definitely a subject we will raise with the provinces when we negotiate a new Health Accord.

I do support this change and hope we can work together in the future.

Regards,

Sharon Scott- Levesque RN

Fredericton NDP Candidate

Thank you Sharon Scott-Levesque for supporting the inclusion of ABA for autism treatment in a new Canada Health Act accord.  Harold Doherty

Nice To See Autistic Twin Sons of Toronto Family Receiving Autism Treatment In New Brunswick

PHOTO BY MARC GRANDMAISON / THE CANADIAN PRESS

The headline of the Toronto Star article Toronto family chases autism treatment across the country  doesn't mention the province to which the family in the Toronto Star article seeking early autism treatment for their autistic twin sons moved  - New Brunswick. Nor does the article itself delve into how the province usually mentioned as a financial disaster could have become a Canadian leader in early autism treatment as it was described by David Celiberti, Ph.D., BCBA-D, President of  the Association for Science in Autism Treatment in an October 23, 2010 commentary "ASAT Responds to Canadian CBC's N.B. Can Be a Leader in Autism Services" and again in his  interview with Dr. Paul McDonnell in the 2014 ASAT summer newsletter.  The essence of the Association of Science in Autism Treatment's commentary was that NB was already a leader; one whose autism service model was worthy of consideration by other Canadian jurisdictions. 

So how ... and why .... did New Brunswick develop an early intervention model worthy of consideration by other Canadian provinces seeking to provide early autism treatment to the autistic children of their province?  Without going over it again in detail intense parent advocacy focused specifically on request for  an early autism intervention prompted the NB government of day to to put out tenders for agencies to provide early autism treatment.  That call was answered successfully by Paul McDonnell and UNB-CEL. who developed the UNB-CEL autism training program in both French and English.

We have previously heard unconfirmed rumors of families in national organizations seeking relocation to NB so their autistic children could receive treatment. It felt good for this autism parent who was part of that very focused, committed parent advocacy team that prompted development of the made in NB autism program  to see the be benefits of the program being received by the children of the Toronto family in the Toronto Star article. 

More Science in Support of ABA Effectiveness for Autistic Children

The US Agency for Healthcare Research & Quality Review Therapies for Children  With Autism Spectrum Disorder: Behavioral Interventions Update has found a dramatic increase  in the scientific evidence backing the effectiveness of intensive behavioral therapy for children affected by autism. The report some 519 pages in length has been reviewed on the Autism Speaks Science Digest site:

"We are finding more solid evidence, based on higher quality studies, that these early intensive behavioral interventions can be effective for young children on the autism spectrum, especially related to their cognitive and language skills,” says lead author Amy Weitlauf, a clinical psychologist with the Vanderbilt [University] Kennedy Center. (The Vanderbilt Kennedy Center is part of the Autism Speaks Autism Treatment Network.)

Dr. Weitlauf and her co-authors are members of the Vanderbilt Evidence-based Practice Center. It's one of twelve federally funded centers conducting scientific reviews to help patients, clinicians and policy makers make informed decisions about healthcare services.

Their review updates a 2011 report that noted gaps in the research needed to assure the effectiveness of often-costly autism therapy programs. In particular, they examine new scientific findings on the effectiveness of intensive early intervention therapies based on applied behavioral analysis (ABA). Their update includes 65 studies published since the 2011 report.

“This review speaks to the clear consensus on intensive early intervention,” comments developmental pediatrician Paul Wang, Autism Speaks senior vice president for medical research. “Kids with autism clearly benefit from these behavioral interventions, and we need to make sure that they’re provided.

“In the long run,” Dr. Wang adds, “intensive early intervention saves money by promoting greater independence later in life. Autism Speaks continues to sponsor research to show how we can further enhance intervention methods and their cost-benefits.” 

Lorri Unumb, Autism Speaks vice president for state government affairs, notes the importance of the new report for advocacy efforts. “The new Vanderbilt study further reinforces the overwhelming record of evidence supporting the efficacy of Applied Behavior Analysis in treating children with autism,” she says. “In study after study, ABA continues to be confirmed as a beneficial intervention that can vastly improve the lives of kids with autism. And with each study, insurance industry claims that ABA is somehow ‘experimental’ become ever more untenable.”"

Here  in Canada parents have argued for more than 15 years for government provided ABA treatment for autism based on the studies reviewed at different points in time by the US Surgeon General, the MADSEC (Maine) Autism Task Force Report, and the American Academy of Pediatrics. Now recent studies published in the Canadian Medical Association Journal (January 2014) and this review by the US Agency for Healthcare Research & Quality Research further strengthen the evidence basis of ABA as an effective autism treatment.  None of this is likely to  matter to strident anti-ABA Advocates but for government service providers and parents of autistic children this further strengthening of the evidence basis in support of ABA for autistic children will provide yet more guidance in how to help autistic children.

Canada's Autism Disgrace 2007: 2014 Update

Photo from Ameriquebec.net 

In December 2007 I wrote Canada's Autism Disgrace, describing the lack of a real National Autism Strategy in Canada.  It is now 2014 and nothing has changed. Canada still lacks a real National Autism Strategy. The words I wrote in 2007, reprinted below, are as true and accurate today as they were then:

What is Canada's National Autism Strategy? The answer is simple; we don't have one. And as long as Stephen Harper's Reform-Alliance-Conservative government rules Canada with an iron fist we will not have a National Autism Strategy. My friends of Conservative background in Canada may not like it but that is the hard brutal truth. Canada will not have a real National Autism Strategy as long as Stephen Harper is Prime Minister of Canada. 

We certainly had the beginnings of a National Autism Strategy with the passing of the Andy Scott-Peter Stoffer motion in the House of Commons. And MP Shawn Murphy fought the good fight with his private member's initiative; defeated in the House of Commons by the alliance between the Harper Conservatives and the separatist Bloc Quebecois. Senator Jim Munson has continued his valiant efforts to keep the need to address Canada's national autism crisis alive in the media but even those efforts are becoming more challenging as the Harper-Clement team simply ignores these initiatives, ignores the needs of autistic children and adults in Canada, and proves day in and day out that they don't give a damn about the fate of autistic Canadians. 

The National Autism Strategy of Prime Minister Harper really amounted to nothing but a mediocre web site and a promise of a National Autism Symposium. The National Autism Symposium was postponed when it became clear that real autism advocates, parents fighting for their autistic children, wanted to attend the symposium. A second symposium was scheduled for November 8 and 9 in Toronto. The invitation process was itself secretive, parents were largely unrepresented and any outspoken advocates were intentionally excluded from the Symposium. 

The lists of speakers and symposium themes were never made public. The list of Harper government, hand picked delegates, to the symposium was never made public although it is a good bet that anti-ABA activists like Michelle Dawson and Laurent Mottron would have been invited. The Quirks and Quarks duo rarely miss an opportunity to promote their fringe anti-ABA views, contrary to hundreds of studies over 5 decades and numerous reviews of those studies by organizations such as the US Office of the Surgeon General and the American Academy of Pediatrics, that ABA is a scientifically supported, evidence based, effective treatment for autism. Their long held, closed minded views, so at odds with mainstream professional opinion, come in handy when needed by a government seeking excuses to camouflage their do nothing approach to addressing Canada's National Crisis. Just a guess, but I am betting that the Harper team was quite happy to invite Mottron and Dawson to the invisible, forgotten, National Autism Symposium. 

The Autism Symposium went ahead on November 8 and 9 in Toronto and Canadians STILL don't know a thing about what was said; or what conclusions, if any, were reached. It is likely though that the Harper spin doctors will ultimately issue a summary indicating that there is lack of agreement on issues on the effectiveness of any one intervention in treating autism. The results of hundreds of studies over five decades of research, the reviews by the American Academy of Pediatrics, the Office of the US Surgeon General, the MADSEC Administrators, the New York and California state agencies, the Association for Science in Autism Treatment; all will be ignored. 

The views of a few fringe anti-ABA activists will be used to prop up a cynical do nothing Harper autism policy. And Canada's National Autism Strategy will remain as nothing more than what it now is - Canada's Autism Disgrace.

As I said in 2007 Canada will never have a National Autism Strategy as long as Stephen Harper is Prime Minister of Canada.  It is now 2014, Stephen Harper is still Prime Minister and Canada still does not have a National Autism Strategy, a real National Autism Strategy.

Ontario Children Waiting Too Long For Access To Autism Programs - Ontario Auditor General Report 2013

News Release

For Immediate Release                                                             December 10, 2013

CHILDREN WAITING TOO LONG FOR ACCESS TO AUTISM PROGRAMS, AUDITOR GENERAL SAYS

(TORONTO) Screening for autism is often occurring late, and children who are diagnosed then face long waits for access to some of the programs that could help them, Auditor General Bonnie Lysyk says in her 2013 Annual Report. In addition, certain services are not being directed to those that may benefit the most.

“The Ministry of Children and Youth Services has quadrupled autism funding over the last decade, but there are still more children with autism waiting for government-funded services than there are chil­dren receiving them,” Lysyk said today following the release of the Report.

Intensive Behaviour Intervention (IBI) is the Ministry’s primary autism program, and the Ministry has also introduced several other programs, including applied behavioural analysis (ABA)-based services, and respite programs.

The audit found that children with autism are diagnosed in Ontario at a median age of a little over 3 years, later than the screening period of 18 to 24 months old endorsed by the Canadian Pediatric Society for children with risk factors. Then, due to long wait lists, Ontario children do not typically start IBI until almost age 7. Research has shown that children who start IBI before age 4 have better outcomes than those who start later. In addition, although scientific research shows that children with milder forms of autism have better outcomes with IBI, the program is currently available only to chil­dren assessed with more severe autism.

Following are some of the Auditor General’s other significant findings:

•    ABA-based services, the only type of funded therapy available to children with mild to moderate forms of autism, allow a child to work on only one goal at a time and may not be sufficient for those who have many behavioural problems or goals to achieve. After achieving one goal, the child returns to the bottom of the wait list.

•    The lead service agencies decide how to allocate Ministry funding for IBI between two service-delivery options: direct service, where the child receives service directly from a service provider at no cost; or direct funding, where the family gets funds from the lead agency to purchase private services. Wait times for IBI services can differ significantly between the two options and among regions. In one region in 2012, the average wait for IBI services under direct funding was five months longer than under direct service. In another region, the situation was reversed.  

•    Children discharged from IBI services in 2012/2013 under the direct-funding option received on average almost one year more of services than those under the direct-service option (35 months versus 25 months). As well, children receiving IBI under the direct-service option often received fewer hours of therapy than they were approved for.

•    Children transitioning to high school and beyond receive minimal support.

•    Since 2006, the Ministry has reimbursed up to 60 individuals a total of $21 million for the cost of IBI therapy and other expenses outside of the regular service system. Per child, this represents more than double the value of services that a child in the regular service system typically receives.

For more information, please contact:

Bonnie Lysyk

Auditor General

(416) 327-1326

For more information and to view the full 2013 Annual Report, please visit 

www.auditor.on.ca

Autism Research Progress To Date In Two Words: Lovaas, ABA

Research to date benefiting persons suffering from autism disorders can be summed up in two words: Lovaas, ABA. The work done by Dr. Ivar Lovaas has been applied successfully for decades as reported by the US Surgeon General's office (1999) and by the American Academy of Pediatrics (2007), reaffirmed (2010):

The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4

American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

Conor Debunks TWO Autism Myths Eh!

Yesterday was Canada Day and Conor sported his Team Canada shirt to celebrate.  He also debunked not one but TWO autism myths.  Conor has received ABA based intervention at school for 8 years.  Yet, contrary to the myth that ABA causes discomfort and harm to persons with autism disorders,  Conor shows his terrific smiles again ( see also side bar on this blog) debunking that nonsense yet again.  He also debunks the myth that people with autism disorders do not like hugs and his Mom was very happy to assist in the demonstration!

ASfAR Early Autism Intervention Review: ABA Only Autism Intervention to Receive Highest Rating of E: Established Based on Evidence

The Australasian Society for Autism Research has just released "A Review of the Research to Identify the Most Effective Models of Practice in Early Intervention for Children with Autism Spectrum Disorders" which assesses the research evidence in support of the various early autism interventions and rates the interventions according to the level of evidence base in support of each intervention.  As with every other major research review of the effectiveness of early autism interventions only ABA, applied behavior analysis, received the highest rating:

All credible reviews of autism interventions from the US Surgeon General to the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders (2007, confirmed 2010) have rated ABA highest of all early interventions for autism disorders. Only ABA has consistently, as in this Australiasian review, been placed in the highest category in this case described as "Established based on Evidence".  This review, like all other reviews of the research literature before it, is unlikely to change the minds of the anti-ABA ideologues but it is important as one more tool to support political and legal advocacy aimed at providing education and health benefits for autistic children and adults.  Thank you to Dr. Jon Brock a member of the ASfAR executive committee for highlighting this new research report via Twitter. 

ABA Treatment for Autism: America Leads, Lets Catch Up Canada, Lets Get Moving Again!!

At one time the argument might have been made that Canada led North America in terms of provision of evidence based treatment for autism.  Strong parent advocacy had made gains in encouraging provincial governments in British Columbia, Alberta and New Brunswick to provide Applied Behavior Analysis treatment. Our federal government, however, refused to get involved in any meaningful way and the Harper government played politics with the National Autism Strategy. The pitiful National Autism Symposium was postponed to allow the deck to be stacked with anti-ABA advocates and to weed out ABA advocates including me.  Here in New Brunswick our successful provincial program for early intervention based on the recognized (Eric Larsson, David Celiberti) UNB-CEL Autism Intervention Training program has  been abandoned at both the early intervention and school levels in favor of  in house autism intervention "training". In New Brunswick gains made are being abandoned, in Canada federally they never started.  In the Courts our Supreme Court of Canada, apart from a human rights and statutory analysis,  opined in Auton that ABA was an "emergent" therapy, notwithstanding earlier findings by the US Surgeon General, among other prominent authorities, that ABA effectiveness as an autism treatment was backed by 30 years and hundreds of studies.

Our good neighbors to the south, however, are taking autism disorders more seriously with more states requiring insurance providers to include ABA treatment and a 2012 federal judge ruling ordered that Medicaid cover ABA treatment in Florida.  Now Autism Votes, an Autism Speaks initiative, reports that the US federal government has concluded that ABA is primarily a medical, not just educational, therapy with the result that autistic persons among the 8,000,000 US federal employees will be eligible for ABA treatment under their medical coverage: 

Autism Speaks Hails Landmark Federal Decision Calling Key Autism Therapy a ‘Medical’ Service Eligible for Insurance

NEW YORK, NY -- Autism Speaks hailed today’s announcement by the federal government, the nation’s largest employer, that Applied Behavior Analysis (ABA), the most widely used behavioral intervention used to treat autism, is a “medical” therapy that qualifies for health insurance coverage, rather than an “educational” service.

The decision by the U.S. Office of Personnel Management (OPM) involves health insurance coverage provided to the nation’s eight million federal employees, retirees, and dependents, under the Federal Employees Health Benefits (FEHB) Program. It could have even more far-reaching implications on the health insurance benefits provided all Americans living with autism, as it will be much harder for insurance companies to continue denying coverage for ABA treatment.

. 

“The OPM decision directly contradicts a long-standing insurance industry claim that ABA therapy is not ‘medical,’ but rather ‘educational’ - provided by the schools at taxpayer expense,” said Peter Bell, Autism Speaks executive vice president for programs and services. “Now, tens of thousands of families will have better access to more affordable, critical ABA treatment.” 

The decision was rendered in the form of guidance to insurers who participate in the FEHB Program for policies that will be renewed or issued starting in 2013. The OPM decision does not require the insurers to cover ABA, but rather allows them to offer the coverage as it does many other medical treatments. The guidance reads: “The OPM Benefit Review Panel recently evaluated the status of Applied Behavior Analysis (ABA) for children with autism. Previously, ABA was considered to be an educational intervention and not covered under the FEHB Program. The Panel concluded that there is now sufficient evidence to categorize ABA as medical therapy. Accordingly, plans may propose benefit packages which include ABA.”

Autism Speaks has fought to provide families insurance coverage for ABA therapy through state-regulated plans, self-funded group plans that are regulated under federal law, the FEHB Program, and TRICARE for military families. In each instance, opposition to covering ABA treatment has been based in large part on the claim that ABA is educational, rather than medical."

In Canada our provincial government health care providers defined autism intervention as a social service rather than a medical necessity helping it avoid responsibility for autism coverage in the Courts. Canada still has an autism advocacy movement at work trying to right the Canadian autism ship which has floundered on the rocks of indifference.  Medicare for Autism Now! has been fighting hard to encourage our disinterested federal government to take autism seriously, meet with the provinces and get effective ABA treatment covered for autism under all provincial health care legislation.  

Wake up Canada! We are not falling behind in autism treatment we have already fallen way, way behind.  Get behind Medicare for Autism Now! and provide your support, get involved.  When we wave the Canadian flag this July 1st lets remember our autistic children in need of effective ABA treatment. If our American friends can wake up and address the autism crisis that confronts us all surely we Canadians can do so too,  EH?

US Federal Judge: ABA Proven and Highly Effective Treatment of Children with Autism

It is hard to believe that in 2012 a government agency with responsibilities for the provision or administration of health care could take the position that ABA is an "unproven" treatment for autism.  That was the justification though of the Florida Agency for Health Care Administration in refusing to provide Medicaid coverage for ABA treatment for three persons with autism.   As reported  by the Miami Herald US Federal Judge Joan Lenard disagreed and ordered the FAHCA to provide the Medicaid coverage for the applied behavior analysis treatment: "U.S. Judge Joan Lenard ruled Friday that applied behavioral analysis be covered by Medicaid....Lenard held that ABA was a proven and highly effective treatment of children with autism."

Apparently the Florida Agency for Health Care Administration is not familiar with authorities from the US Surgeon General to the American Pediatric Association and  a number of state agencies that have reviewed the scientific literature and found ABA to be the most evidence based effective treatment for autism.  Or perhaps they   accidentally  subscribed to updates from anti-ABA activists Michelle Dawson and Laurent Mottron who have appeared (often) in the media and in Canadian legal and political proceedings in a prolonged and determined effort to prevent Canadian autistic children from receiving ABA treatment for their autism disorders.    Regardless, US Federal Judge Joan Lenard, in addition to issuing an order directing the agency to provide Medicaid coverage for ABA, has also educated the agency on the benefits of ABA treatment for children with autism disorders. 

ABA Benefits for Autism: Association for Science in Autism Treatment (ASAT) Educates LA Times Alan Zarembo

The attached letter was written by ASAT Board member Sabrina Freeman Ph. D., and Secretary Florence DiGennaro Reed, Ph. D., BCBA-D to the LA Times Alan Zarembo who did such a poor job (in my humble opinion) reporting on autism issues in a recent LA Times series.  In the letter Freeman and Reed attempt to educate Zarembo about the scientific, evidence based benefits that ABA has been demonstrated to bring to autistic children.  

I don't know if a superficial mainstream media reporter is capable of  understanding the information presented in the letter or if he would make the effort to understand.  I applaud ASAT for trying to break through Zarembo's self constructed brick wall of ignorance and educate him about the evidence basis behind ABA, an intervention that has helped so many autistic children. 

ASAT Responds to LA Times Story “Families Cling to Hope of Autism Recovery”

Monday, January 30, 2012

Dear Mr. Zarembo:

We are writing to you regarding your article entitled, “Families Cling to Hope of Autism Recovery” (the Los Angeles Times, December 15, 2011). We appreciate your time and effort in highlighting the work of Dr. Lovaas and the larger field of applied behavior analysis. We especially appreciate your advocacy of science as the means to evaluate the effectiveness of any treatment.

While you acknowledge some positive benefits of applied behavior analytic treatment, your emphasis ignores a large body of research indicating that children who receive Early Intensive Behavioral Intervention (EIBI) benefit significantly relative to those children who do not receive EIBI. We ourselves acknowledge that there are gaps in the science of autism treatment, including EIBI; however, we respectfully disagree with your presentation of the outcomes. We are unaware of other treatment protocols that have been studied and replicated to the same degree as EIBI. Unfortunately, many other treatments are marketed as “cures” without evidence of benefit. As such, EIBI represents best practices for people with autism. While you rely on the AHRQ report in your article, we wish you had also highlighted that treatments based on the principles of applied behavior analysis have been endorsed by the U.S. Surgeon General,1 National Institutes of Health,2 the National Research Council,3 the National Standards Report4 published by the National Autism Center, and others. 5Although we agree that additional research is needed to develop and refine EIBI and other science-based approaches, your article leads readers to conclude that the high cost and burden of a forty hour-a-week requirement to replicate the positive outcomes from the scientific literature is too high a cost for society. We advocate for research funding to identify aspects of treatment that are most important for improving function. Until that time, though, children with autism deserve access to high quality treatments based on our current understanding of science.

The science of applied behavior analysis and its application to autism treatment are often portrayed inaccurately in the media. Unfortunately, we believe your story contributes to further misunderstanding and misconception. The potential risk is that caregivers will delay pursuing empirically-supported, effective treatment. We suggest that rather than advocate denial of effective autism treatment, we should acknowledge the true state of science in autism intervention and advocate for access to effective treatment by families. It is important for parents and caregivers to access accurate information regarding autism treatments so that they may make wise decisions for their children. For more information, please visit http://www.asatonline.org/resources/autismtreatments.htm.

Sabrina Freeman, Ph.D.
Board Member, Association for Science in Autism Treatment


Florence D. DiGennaro Reed, Ph.D., BCBA-D
Secretary, Association for Science in Autism Treatment


References 
¹U.S. Department of Health and Human Services (1999). Mental health: A report of the surgeon general. Rockville, MD: U.S. Department of Health and Human Services, Substance Abuse and Mental Health Services Administration, Center for Mental Health Services, National Institutes of Health, National Institute of Mental Health.
²Strock, M. (2004). Autism spectrum disorders (pervasive developmental disorders). NIH Publication No. NIH-04-5511. National Institute of Mental Health, National Institutes of Health, U.S. Department of Health and Human Services, Bethesda, MD, 40 pp. http://www.nimh.nih.gov/publicat/autism.cfm
³National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education. Washington, D.C.: National Academy Press.
⁴National Autism Center (2009). National Standards Report. Randolph, MA: National Autism Center.
⁵New York State Department of Health (1999). Clinical practice guideline: Report of the recommendations. Autism/pervasive developmental disorders, assessment and intervention for young children (age 0-3 years). Albany, NY: NYS Early Intervention Program.

Medicare's Orphans and The Supreme Court of Canada's Failure to Protect Children with Autism Disorders

On November 1, 2011 the film Medicare's Orphans was released by Medicare for Autism NOW! It is an excellent presentation of the history of the fight for medicare coverage of autism treatment in Canada and includes comments about the Supreme Court of Canada's monumental failure, in the Auton decision,  to ensure that Canadian governments provide coverage for treatment for autism disorders, a serious and disabling condition for many who suffer from it.


Medicare's Orphans. from MedicareForAutismNow on Vimeo.

Following is a reprint of a comment I posted on March 28, 2009 which reviewed the Auton decision in which the Supreme Court of Canada turned their back on our children with autism. 

The comment includes a stinging criticism of the Auton decision in a submission to the United Nations Committee on Economic, Social and Cultural Rights as part of the Committee's 2006 Review of Canada’s Fourth and Fifth Periodic Reports Under the ICESCR (International Covenant on Economic, Social and Cultural Rights) by the CCPI a national committee of  low-income individuals, anti-poverty organizations, researchers, lawyers and advocates for the purpose of assisting poor people in Canada to secure and assert their rights under international law, the  Canadian Charter of Rights and Freedoms ("the Charter"), human rights legislation and other law in Canada.

Saturday, March 28, 2009

Autism in the Courts in Canada - What Auton Means

What did the Supreme Court of Canada decision in Auton mean?

The decision was a stunning setback for autistic children and their families who were trying to help them receive treatment for their autism disorders. In practical terms it meant that parents seeking to compel governments to provide treatment for their children' s autism disorders would have to do so through political action. Canadian courts received a clear direction to show deference to the economic and policy decisions of governments with respect to disadvantaged groups like autistic children. No substantive right to treatment for autism was found to exist unless governments decided to provide the treatment. A complaint of discrimination could not be founded unless government had decided to provide the treatment and then did so in a discriminatory fashion.

The decision of the Supreme Court of British Columbia in Auton v. A.G.B.C., 2001 BCSC 220 (CanLII), upheld on appeal by the British Columbia Court of Appeal, Auton (Guardian of) v. British Columbia (Attorney General), 2002 BCCA 538 (CanLII), had energized autism advocates across Canada. The fact findings and rulings by the Honourable Madam Justice Allan of the Supreme Court of British Columbia were, in my view, consistent with the spirit and intent of the equality provisions of the Charter of Rights and Freedoms that section of Canada's Constitution which is also intended to help fulfill in domestic law Canada's international human rights commitments. Her conclusions about the realities of autism spectrum disorders and the efficacy of Applied Behavior Analysis as a medical treatment have been borne out by the subsequent findings of other bodies, in particular the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders, 2007. Ultimately the Supreme Court of Canada reversed the decisions of Justice Allen and the British Columbia Court of Appeal and effectively quashed any legal recourse to compel Canadian governments to provide treatment to autistic children.

The Auton decision is one of three cited in the Submission of the Charter Committee on Poverty Issues to the United Nations Committee on Economic, Social and Cultural Rights as part of the Committee's 2006 Review of Canada’s Fourth and Fifth Periodic Reports Under the ICESCR (International Covenant on Economic, Social and Cultural Rights). The CCPI argued that Canada has failed to ensure effective remedies to Covenant rights. Specifically Canada has chosen not to make the Covenant directly enforceable in its courts.

The CCPI analysis of the Auton decision follows in full:

"In the Auton case, the Supreme Court dealt for the first time with the question of whether the right to equality under s.15 of the Charter imposes positive obligations to provide specialized treatment for autistic children. The parents of children with autism argued that that children with autism have unique needs and that a refusal by governments to meet those needs has a discriminatory consequence in terms of fundamental issues of dignity, security and human development. This was really the first case to explicitly challenge the Court to recognize that governments have an obligation to meet the unique needs of a clearly disadvantaged group. As such, it attracted ten governmental interveners – Canada and nine provinces, all of whom argued that the Court should not interfere with governments’ decisions on how to allocate scarce resources in healthcare, and that the right to equality should not be interpreted so broadly as to impose this kind of obligation on governments.

The Chief Justice, writing for a unanimous Court, found no violation of the right to equality. Disregarding the Court’s openness on earlier occasions to a broader paradigm of positive obligations consistent with the right to health and other Covenant rights, McLachlin, C.J. declared that the legislature “is free to target the social programs it wishes to fund as a matter of public policy, provided the benefit itself is not conferred in a discriminatory manner.”50 The Court found that to establish a claim of discrimination, the petitioners would need to show differential treatment in comparison to a comparator group - “a non-disabled person or a person suffering a disability other than a mental disability (here autism) seeking or receiving funding for a non-core therapy important for his or her present and future health, which is emergent and only recently becoming recognized as medically required.”51 Without a comparator, those with unique needs have no protection from inequality of benefits. The Chief Justice simply asserted that “there can be no administrative duty to distribute non-existent benefits equally.”

The Supreme Court was considering, in Auton, really for the first time, the constitutionality of doing nothing to meet the needs of an extremely disadvantaged group in society. It appears to have affirmed, in shocking fashion, the government’s ‘right’ to do nothing. The Court made no reference to international human rights law, and made no effort to interpret the right to equality in a more substantive manner, consistent with this Committee’s General Comment No. 9."

In every day language the Supreme Court of Canada in the Auton decision rendered the equality provisions of the Canadian Charter of Rights and Freedoms, and Canada's commitments under the International Covenant on Economic, Social and Cultural Rights meaningless. The analytic gymnastics performed by the Court amounted to saying that if a group is disadvantaged in a way that can not be readily compared to the treatment afforded a comparative group then it can not even begin to assert a claim pursuant to the equality provisions of the Canadian Charter of Rights and Freedoms. Unless governments grant or recognize a right to specific services by disadvantaged groups Canadian courts will be of no assistance in compelling governments to provide such services.

To paraphrase the CCPI submission the Supreme Court of Canada, in the Auton decision, recognized the constitutionality of government's right to do nothing to help the disadvantaged - in that case autistic children.

LA Times Gets It Right: ABA Is An Autism Treatment Worth Funding

I am a frequent critic of the mainstream media's tendency to misrepresent autism disorders. The mainstream media routinely presents feel good stories of autistic accomplishments, painting autism as merely a different way of thinking and speculating that many of histories great geniuses were probably autistic.  Discussion of autism treatments ranges from riding horses in Mongolia to swimming with dolphins.  More serious mainstream media treatments of autism treatments will acknowledge that early intervention is important for successful outcomes without mentioning ABA, applied behavior analysis, the most solidly evidence backed treatment shown for many years to result in a number of intellectual, language and behavior gains in autistic children who receive early intensive ABA intervention.

I have criticized all aspects of mainstream media misrepresentation of autism including the tendency to hide the evidence based effectiveness of ABA known for many years and confirmed by authorities from the US Surgeon General to the American Academy of Pediatrics.  It is only right that I acknowledge, with gratitude, when a mainstream media institution gets it right as the LA Times has done with its clear, straight to the point,  statement about the importance of ABA as a treatment for autism disorders:

"An autism treatment worth funding


Editorial


A California bill would require insurance companies to cover the cost of applied behavioral analysis for the autistic. It's good policy.


September 30, 2011


State law requires insurers to include coverage for autism in comprehensive healthcare policies. Now, lawmakers want to go a step further, requiring coverage of a particular autism treatment: applied behavioral analysis. Insurers are resisting. They don't question the effectiveness of the therapy; they just say it doesn't fit the definition of "medical" treatment. Their position reflects how crucial parts of the healthcare system are wedded to the status quo, regardless of what's best for patients. State lawmakers have passed a bill to overcome the insurers' resistance, and Gov. Jerry Brown should sign it."

Laurent Mottron's Dangerous Anti Autism Cure Beliefs Resurface

Dr. Laurent Mottron has spent his entire career studying persons with high functioning autism and Aspergers.   Even as the parents of autistic children and good hearted people everywhere feel sadness and grief over the loss of another autistic child presumed lost Dr. Mottron promotes and oversells a study he led which according, to the good Doctor, supports his belief that autism should not be cured.

I have been unable, in the several years that I have been aware of his anti autism cure ideology,  to find any indication that Dr. Mottron has spent any time working with, or studying, those severely affected by autism disorders, whether they be the 75-80% of persons with Autistic Disorder and Intellectual Disability, those who engage in debilitating and dangerous self injurious behavior or those who wander from home and caregivers to danger, and sometimes, death.  The loss last year of James DeLorey in a snow storm, the Australian child who wandered from home into automobile traffic, the still ongoing tragedy  but now presumed death, of Adam Benhamma near Montreal, will have no impact on the entrenched "autism is beautiful beliefs" of Dr. Laurent Mottron. 

I admit straight up that I personally do not subscribe to Laurent Mottron's anti autism cure ideology and do not trust any study by him  like the one now being touted, which he led, concerning "autistic" brains.  I would ask the professionals who actually work trying to help autistic children lead  fuller lives, including those who actually work with autistic children with severe autism disorders, to analyze carefully and critically Dr. Mottron's new study.  I will be very surprised if the "autistic" brain Dr. Mottron reports on is anything other than a snapshot of some of the very high functioning autistic subjects he has worked with for decades to the exclusion of  severely affected, intellectually challenged persons with autism disorders.

Dr. Laurent Mottron is not just a researcher who has devoted decades to studying high functioning autistic persons.  He has also removed himself from the realm of scientific detachment and objectivity and  involved himself in Canada's legal system in an effort to prevent medicare coverage of ABA treatment for autistic children in British Columbia in the Auton case Auton (Guardian  ad litem  of)  v. British Columbia (Attorney General), [2004] 3 S.C.R. 657, 2004 SCC 78  case.  In Auton  Mottron helped launch the career of high functioning autism researcher and anti ABA advocate Michelle Dawson  with his affidavit in support of her intervention, as an "autistic", before the Supreme Court of Canada.   In his supporting affidavit the good Doctor solemnly declared and affirmed the following statement of expert opinion:

5.	Ms. Dawson has a tremendous understanding of both the difficulties faced by autistic individuals in our society, as well as the tremendous inherent strengths of many of these individuals.

Personally I have never seen Michelle Dawson make any statement that reflects any understanding, let alone a "tremendous" understanding of the difficulties faced by autistic individuals in Canadian society.  I have never seen or heard statements by her acknowledging the existence of the many persons with Autistic Disorder and Intellectual Disability. I don't know how her life experience as a very intelligent, adult diagnosed "autistic" gives her tremendous, or any,  insight into the challenges faced by low functioning, intellectually disabled autistic children.  Nor have I seen her, or the good Doctor, make any statements describing or addressing in any intelligent fashion the many serious behavior challenges faced by those severely affected by autism disorders.  What is clear though is that Michelle Dawson and Dr. Laurent Mottron both believe that autism is a good thing that should not be cured.  They have long held these anti cure, including anti ABA treatment,  autism beliefs. 

Dr. Mottron also appeared as an unidentified expert witness "the mysterious Dr. M" in Ms Dawson's case before a Canadian Human Rights Tribunal, Dawson v. Canada Post Corporation, 2008 CHRT 41,  in which he described the idea of curing autism as nonsense:

[86] Ms. Dawson testified that autism is a neurological disability and that people generally do not have a good understanding of this reality. Ms. Dawson stated repeatedly that autism was not a mental illness. For her, a mental illness has an onset, various treatments, and there is a return to the previous state to a greater or lesser degree. Both Ms. Dawson and Dr. M., as will be seen, pointed out that the notion of curing autism was nonsensical. Still many people want to cure autism.

....

b) The testimony of Dr. M

[99] At the beginning of his testimony, Dr. M., who is a psychiatrist, was qualified by the Tribunal as an expert in autism. Dr. M. filed a report as well as three letters pertaining to Ms.Dawson’s condition.

[100] Dr. M. testified on the nature of autism, autistic individuals as well as on Ms. Dawson’scondition. The credibility of Dr. M. as well as the accuracy of his statements and opinions wasnot challenged by the Respondent. The Tribunal finds Dr. M.’s testimony highly credible even if the evidence shows that in recent years, Ms. Dawson has worked with him and has co-authored scientific articles with Dr. M.

And now, surprise, surprise, surprise,  Dr. Mottron has published a study which, according to the good Doctor, supports his long held belief that autism should not be cured.  I wonder how many low functioning, severely challenged, intellectually disabled autistic subjects were included in Dr. Mottron's study? I do not buy what the mysterious Dr. M is selling and I doubt that most parents with autistic children, and most professionals tasked with addressing some of the serious and dangerous challenges faced by autistic children and adults,  will buy it either.  

Dr. Mottron is not necessarily an objective, detached medical professional or scientific researcher.  He has long held a belief that autism should not be cured and his latest study conclusions are used to support  his own beliefs. Given his long held personal beliefs his study, and his public commentaries about what conclusions can be drawn from that study, should be given close, careful scrutiny.   In particular his conclusion that the study supports his belief that persons with autism should not be cured should be given very close examination.  As Dr. Mottron stated in the Vancouver Sun:

""While this study does not conclusively show a causal effect between brain activity and the enhanced abilities of those with autism, lead researcher Laurent Mottron of the University of Montreal said it is the most "robust" evidence yet suggesting a link. He said it adds another argument against attempts to "cure" autistics.

When we try to turn an autistic toddler into a non-autistic toddler, it's painful, it's expensive and it does not work," he said. "We should not try to assimilate or break the difference (between autistics and non-autistics), but just admit that it's a difference that has good and bad consequences."

High functioning autism researcher Dr. Laurent Mottron has been promoting his anti autism cure belief for many years.  Hopefully his latest efforts to thwart treatment and cure of autism disorders will enjoy no more success than his previous efforts.  The chance to improve the lives of autistic children and adults is too big a price to pay for the promotion of Dr. Mottron's personal belief system.

Looking for Helpful Autism Information Online? Start With ASAT, the Association for Science in Autism Treatment

We all know that, at least when it comes to autism, the on line world is a mess. There is no such thing as a community of interests when discussing autism. There are many parents trying to make sense of what is happening with their child and his or her autism disorder. There are professionals trying to help , some with totally pure and noble intentions, others who don't give a flying fig about your autistic child who are  guided by self interest or personal ideology.  There are some obvious sites to be careful about when trying to find on line autism help ... the Scienceblog bloggers whose focus is in proving that vaccines can never, ever, ever cause autism or any form of neurological damage will be of no assistance to you at all and  the "scientists" and  "skeptics" who blog there have only a tangential interest in autism and know very little about autism disorders. 

The Neurodiversity bloggers who think that autism is not really a medical or mental disorder, who will try to convince you that autism is just a natural variation, a wonderful parade of joy and bliss, that autism can only be considered a disorder in the sense that autism is not accepted by society should absolutely not be taken seriously. They could well lull you into a false belief that all will be well if you just think good thoughts about autism which they have elevated into an object of worship.

With all the nonsense that clutters the autism world on line where can a parent seeking to help their autistic child look to ground themselves as they being the life long struggle, and it will be a life long struggle in most cases, to help their autistic child? My recommendation for a starting point in the search for information is not in the autism blogs, including this one, notwithstanding that it is arguably the best informed, best intentioned and best written autism blog in the world (just kidding people).  The site that I recommend as your starting point in your on line autism journey and a valuable resource at all times is the Association for Science in Autism Treatment. The ASAT logo states that if offers real science and real hope and if you are looking for real science and real hope I suggest you start at ASAT.

The ASAT site is dedicated to an evidence based approach to autism treatments. The ASAT organization  is thorough, balanced and well informed. It is guided  by people like David Celeberti and Bridget Taylor, people who are both well educated and very experienced in actually helping autistic children.  In reading the abundant materials on the ASAT site you might think it is essentially an ABA site but if you do then you are simply ... wrong.  ASAT, as the name indicates is committed to real science, evidence based science. For many years ABA has been the only autism intervention that has enjoyed any substantial body of  quality evidence in support of its effectiveness. If you read the ASAT comments and recommendations though you will find acknowledgments that other approaches hold some promise but require more research in to determine their effectiveness.  ASAT does state point blank, but without exaggeration, that some methods are implausible and possibly dangerous and identifies those methods.

Throughout the ASAT site you will find language that is respectful both towards parents and towards most efforts to help autistic children.  There is a lot of helpful information on the ASAT site, it is well researched and well organized.  If you are starting on the path of helping your newly diagnosed autistic child you should really consider starting with the Association for Science in Autism Treatment.

NOTE: This is not a paid infomercial and I do not  have advertising on this blog site. My only connection to ASAT , other than being a parent of a severely autistic son,  and having read ASAT materials for many years, is that, along with some other autism parent advocates,  I had the privilege of meeting  David Celiberti briefly during a visit he made to Fredericton.

Nor do I agree with everything on the site. The ASAT site prevalence information for Autism Spectrum Disorders,  perhaps reflecting the influence of  advisory board member Dr. Eric Fombonne,  still indicates a 1 in 160  rate well after the CDC stated that the current rate for ASD's  is 1 in 110. That said,  the place to start  looking on line for trustworthy, documented information about autism treatments is ASAT.  IMHO.

Evidence Based Autism Treatment: What the New York Times Didn't Say About Dr. O. Ivar Lovaas

The New York Times has now published an  obituary on the passing of Dr. O. Ivar Lovaas.  It is generally a fair commentary if understated in describing his positive  impact on the lives of autistic children.  The NYT summary of Lovaas therapy doesn't  really seem to get it though, doesn't  really seem to understand  why so many people, parents and authorities, seek  Lovaas ABA therapy for autistic children despite the cost:

Though Lovaas therapy can cost tens of thousands of dollars a year, parents of autistic children clamored for it. In 1995, Dr. Lovaas founded the Lovaas Institute, based in Los Angeles, which trains teachers in his method. Today, thousands of children throughout the United States and abroad are receiving Lovaas therapy.

The NYT fails to demonstrate that it  fully understands why  the Lovaas method  is so widely sought and applied by parents and others interested in actually helping autistic children .... the evidence base in support of its effectiveness. The NYT makes no mention of the  numerous credible health authorities, including the office of the US Surgeon General, that  reviewed hundreds of ABA studies and concluded that it is the only evidence based effective intervention for helping autistic children.  

Dr. Lovaas more than anyone else advanced the evidence based approach to helping autistic children that has made ABA the intervention that so many parents "clamor" for as the NYT puts it somewhat condescendingly.  The evidence in support of the Lovaas ABA method is what persuaded so many parents that it was the treatment on which to wager their children's precious early development time.  The evidence in support of  ABA is what assisted parents in Canada and the US in advocating for the provision of treatment for their autistic children.  

The New York Times can not bring itself to say outright what many parents  and public health authorities  know ... that Dr. Lovaas  was one of the very few who have actually helped autistic children. 

More Weak Autism Intervention Journalism from the New York Times

The New York Times is not exactly a "go to" resource for well informed, objective discussion of autism interventions.


In October 2008 it presented a slanted article on DIR/Floortime. In that article the guest author praised DIR/Floortime as a new modern improved form of autism intervention without mentioning the lack of scientific evidence in support of of the DIR/Floortime approach. The article also made  unsubstantiated derogatory comments about ABA as "rote learning".

With its coverage of the recent ESDM study the NYT has done it again.  In an article today Raising I.Q. in Toddlers With Autism Tara Parker-Pope praises the results of the Denver ESDM study of a group of 48 autistic toddlers  "showing substantial gains in I.Q. and in listening skills after two years of therapy".  This time the NYT makes no derogatory reference to ABA.  Instead while praising the ESDM approach the NYT fails to mention that the  approach employs principles of Applied Behavior Analysis as set out in the AAP journal Pediatrics article:

"Forty-eight children diagnosed with ASD between 18 and 30 months of age were randomly assigned to 1 of 2 groups: (1) ESDM intervention,which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years"

For reasons that are not clear the NYT simply has a hard time when it comes to being objective about ABA as an autism intervention.  Given the large readership and influence of the NYT that is most unfortunate.

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Autism and ABA: Morris's (Unanswered) Challenge to Gernsbacher Will Be Featured at CalABA Annual Conference 2010

Edward K. Morris is scheduled to give what should be a fascinating keynote speech at the 28th Annual Regional Conference of the California Association for Behavior Analysis. Professor Morris's topic will be The Gernsbacher Lectures: Cut Aways, Outtakes, and Bloopers - and Essentialism. The CalABA conference is scheduled for February 18 to 20, 2010 at the Hyatt Regency in Irvine California.

Professor Morris published a scathing article in the Behavior Analyst, A Case Study in the Misrepresentation of Applied Behavior Analysis in Autism: The Gernsbacher Lectures, in which he thoroughly, systematically and candidly dissected and demolished her criticisms of ABA. To my knowledge Professor Gernsbacher has not provided a public reply to Professor Morris's challenge.

Professor Morris's speech at the CalABA conference should be interesting. Hopefully Professor Gernsbacher will attend and reply, or at least offer a public rebuttal in some forum, to explain her anti-ABA crusades in light of what appears to be a devastating challenge to her opinions from Professor Morris.

Gernsbacher has influenced people, helping to turn some parents and professionals away from ABA as an intervention for autism, one recognized by state agencies, the Association for Science in Autism Treatment, the US Surgeon General and the AAP as the most empirically validated autism intervention to date. Having done so, she should back up her views in public debate with an informed and capable opponent of her views. .... if she can.

autism