Barry Hudson: Ontario and Canada Are Failing Our Autistic Children and Adults

Barry Hudson is  a very well informed, articulate father of an autistic son in Ontario, autism advocate and director with Medicare for Autism Now! Barry describes his family life with autism and the impact of autism on family life.  He describes waiting lists and other obstacles that the Ontario bureaucracy uses to prevent children with autism from receiving autism services.  Children with autism who are not considered severe enough do not receive treatment. Children with autism who are considered too severe do not receive treatment.  A child with autism who clears these hurdles will have treatment services discontinued if they do not pass periodic improvement tests.  

Barry also provides an informed articulate history and criticism of Canada's failure to provide a national health care scheme to cover autistic children in Canada, a failure made more pronounced by the fact that some other countries have identified autism as national priorities and put programs in place to provide treatment.  

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.

Autism Advocacy? Anti-ABA Activist Michelle Dawson at the Supreme Court of Canada

Elizabeth Svoboda, like Erin Anderssen before her, has received criticism from Michelle Dawson, for daring to characterize her activities in ways that Ms Dawson, an outspoken public figure, does not approve of. Her letter reacting to the Svoboda article about the Neurodiversity movement in Salon.com contains a number of points of disagreement including her role as a crusader and, in particular, her role before the Supreme Court of Canada in Auton where she intervened as an "autistic" a person with an unspecified Autism Spectrum Disorder.

I actually agree with Ms Dawson that it is inaccurate to state that she personally:

"convinced the Canadian Supreme Court to overturn an appeal that would have provided state funding for ABA therapy."

Apart from the Appellant British Columbia government a number of provincial governments intervened seeking to have the Supreme Court of Canada reverse the lower court orders directing the BC governement to fund Early Intensive Behavioral Intervention (ABA). The Supreme Court of Canada agreed with the various governments' arguments which were essentially based on the premise that it was the role of legislatures, not the courts, to decide what treatments should be considered medically necessary for what disorders. According to the governments' submissions the absence of evidence that the autistic children involved in the case had been discriminated against with respect to the provision of services determined by the legislature to be medically necessary the Courts erred in intervening under the equality and non-discrimination provisions of the Charter of Rights and Freedoms to order funding of EIBI (ABA) for autistic children.

While I agree that Ms Dawson's role in Auton was probably not determinative, I do agree with Ms Svoboda that Ms Dawson is, and has been, a "crusader" or activist. Ms. Svoboda refers to her as an "autistic-rights" crusader. Ms Dawson was in fact before the Supreme Court of Canada, not just to "provide information to the court that it did not already have" as she claims in her letter to Ms Svoboda. In Auton Michelle Dawson was there as an anti-ABA activist opposing ABA for autistic children. In that proceeding she opposed the parents' request that the SCC uphold the lower courts' Orders directing the BC government to fund EIBI (ABA) for autistic children.

In Auton, The Orders of the Supreme Court of British Columbia and of the British Columbia Court of Appeal directed the BC government to fund early intensive behavioural therapy for children with autism or autism spectrum disorder. Failure to do so constituted a breach of the childrens' rights under s. 15(1) of the Charter. Ms Dawson, in the interveners factum filed on her behalf, and available online, expressly opposed the request of the autism parents involved to uphold those orders by asking the SCC to reject the premise of those Orders which were the findings by the lower courts that the refusal by the BC government to fund EIBI (ABA) treatment for autism infringed s. 15(1) of the Charter:

80.
The following orders are requested:

That the Respondents’ request to uphold the British Columbia Court of Appeal finding of an infringement of s.15(1) in the particular circumstances of this case be denied.

In the argument portion of her factum Ms Dawson takes issue with the science demonstrating the effectivness of ABA. She clearly opposed ABA in the proceedings on that basis contrary to the views of credible agencies which had reviewed the scientific literature on the effectiveness of ABA and contrary to the expert witnesses in the case, including the BC government's expert witness. She also opposed ABA on the grounds that, in her not so humble opinion, the practice of ABA was unethical because it could extinguish autistic behaviors and because "autistics' were not involved in the practice.

Ms Dawson had also expressly stated her opposition to ABA in the Notice of Application filed on her behalf in which she sought leave to intervene in the Auton proceedings:

5. The applicant is concerned that the judgments of the court below appear to endorse the principle that a particular type of treatment (Applied Behaviour Analysis) constitutes a medically necessary treatment for autistic individuals such that the failure of parents to provide that treatment or the failure of autistic individuals to seek that treatment could constitute a deprivation of basic medically necessary principles;

The Supreme Court of Canada summarized Michelle Dawson's position in Auton succinctly in paragraph 5 of that Court's decision:

"While increasingly accepted, Applied Behavioural Analysis (“ABA”) or Intensive Behavioural Intervention (“IBI”) therapy is not uncontroversial. Objections range from its reliance in its early years on crude and arguably painful stimuli, to its goal of changing the child’s mind and personality. Indeed one of the interveners in this appeal, herself an autistic person, argues against the therapy."

Ms Dawson, like anyone, can reasonably disagree on subjects of public interest. It is not reasonable though for her to contend that she has not been a "crusader" or activist. She has been very active in a number of forums offering her view of what it means to be an "autistic". She has publicly opposed ABA treatment for autistic children on what she considers to be scientific and ethical grounds before the Supreme Court of Canada and the Canadian Senate.

Michelle Dawson may prefer now to be known solely as a researcher but she has been, and remains, an activist with her own ideological, and sometimes political, agenda. That agenda is one which includes opposition to ABA treatment of other people's autistic children notwithstanding the desires of the childrens parents that they receive such treatment and notwithstanding the opinions of a number of credible authorities that ABA is solidly evidence based and supported in its effectiveness at reducing self injurious behaviors in autistic children and helping them to acquire specific intellectual, social and communication skills.

autism

New Jersey Supreme Court Tells Insurer to Cover Autism Therapy

The New Jersey Supreme Court has done what Canada's Supreme Court would not do, it has ordered a health insurance plan for state workers to cover the cost of therapy for a 5 year old autistic boy. As reported in the Star-Ledger online the therapy cost the boy's family about $35,000 per year. The NJSC upheld two earlier appellate rulings:

The Supreme Court upheld two appellate rulings that came down in January and May 2007. The January decision said the commission could not deny treatment for "a class of dependents, notably afflicted children, based on the nature of their mental illness."

In Canada we can sometimes be smug about our "universal" health care coverage believing our system of health care coverage to be superior to that of our American friends. But in Auton the Supreme Court of Canada ruled that governments which provide our primary health care coverage in Canada were not required to provide coverage for ABA treatment for autistic children. For autistic children in Canada, and their families, Auton meant in effect that little, if any, reliance could be placed on Section 15 of the Canadian Charter of Rights and Freedoms.
15.(1) Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.

The New Jersey Supreme Court ordered the state health benefits commission to pay the Micheletti family's bills in two weeks with 30 days to pay future bills. In Canada, by contrast, the families involved came away from the precedent setting Auton decision with something much less substantial - the sympathy of the Court - as expressed by Chief Justice Beverley McLachlin:

One sympathizes with the petitioners, and with the decisions below ordering the public health system to pay for their therapy. However, the issue before us is not what the public health system should provide, which is a matter for Parliament and the legislature. The issue is rather whether the British Columbia Government’s failure to fund these services under the health plan amounted to an unequal and discriminatory denial of benefits under that plan, contrary to s. 15 of the Charter. Despite their forceful argument, the petitioners fail to establish that the denial of benefits violated the Charter.

Vancouver Province Calls for National Autism Strategy

The Vancouver Province has issued a call for a national autism strategy, including an amendment to the Canada Health Act to include autism as an insured health service. One omission from the Province's statement is the need to address the plight of autistic adults particularly those living a custodial existence in mental health care and residential facilities. Still the Province's call for a national autism strategy provides much needed support in the struggle to improve the lives of Canada's autistic population and is appreciated by this father of a severely autistic boy.


A national strategy is urgently needed for autism victims

The Province

Published: Sunday, April 15, 2007

Advocates for the estimated 200,000 Canadians suffering from the neurological disorder known as autism suffered another setback last week in their campaign for greater government support.

A court battle launched by 28 Ontario families to try to get their provincial government to fund treatment for their autistic children ground to a halt when the Supreme Court of Canada declined to hear arguments in the case.

....

The help they get depends on where they live. Alberta, for example, pays up to $60,000 a year to age 18 for treatment. But B.C. pays $20,000 a year to age six and only $6,000 a year thereafter.

B.C. Liberal MP Blair Wilson, who campaigns for autism victims, says such inequity is unacceptable. We agree, and endorse a Senate committee's call last month for a federal-provincial conference to develop a national strategy for autism, which now affects one in 200 children.

The plan should include an awareness campaign, plus more money for research and tax breaks for victims' families. One sweeping solution would be to amend the Canada Health Act to include autism as an insured health service.

We are well aware that the additional burden on health costs would be considerable and would have to be weighed against competing priorities.

But, as a caring nation, we have a moral obligation to do what is right.

http://tinyurl.com/32naeo

To Deskin Wynberg Autism Case Families - Thank You

[Above top Supreme Court of Canada building, bottom - Canadian Parliament building]


Yesterday the Supreme Court of Canada, in a decision which probably did not surprise too many people, dismissed without reasons the application for leave to appeal the decision of the Ontario Court of Appeal in the Deskin-Wynberg case. The Court of Appeal had overturned a trial court decision which ruled that the Ontario Government was in contravention of the Charter of Rights by its refusal to fund Intensive Behavioral Intervention treatment for the families' autistic children. The Supreme court of Canada has shown increasing deference to government decision making during the tenure of the Rt. Hon. Chief Justice Beverley McLachlin, P.C., as Chief Justice of the Court. The Newfoundland pay equity case was the real indicator of the ascendancy of deference to government as the principal concern in the court's equality rights decisions. In that case Newfoundland (Treasury Board) v. N.A.P.E., 2004 SCC 66, [2004] 3 S.C.R. 381the Supreme Court found that postponement of introduction of pay equity schedules constituted serious discrimination but was justified by the challenges facing government decision makers to maintain government credit ratings and assign scarce financial resources.

The Auton case, Auton (Guardian ad litem of) v. British Columbia (Attorney General), 2004 SCC 78, [2004] 3 S.C.R. 657in which the Supreme Court of Canada reversed the unanimous decision of the British Columbia Court of Appeal, and a trial court decision ruling that exclusion of autism treatment from provincial medical care funding constituted discrimination contrary to the Charter left little room for doubt that deference to government now trumps the rights interests involved in Charter of Rights cases. In that case the Court concluded that the Canada Health Act itself provided limited guarantees of health coverage to Canadians and failure to provide coverage for treatment of some conditions could not therefor constitute discrimination.

In Canada it is clear that the courts are becoming an increasingly ineffective remedy for protection and advancement of the rights of children with autism. Any disability group which seeks to enforce what they consider to be their equality rights will have to think long and hard before commencing litigation to protect those rights under the Canadian Charter of Rights and Freedoms.

The litigation in the Deskin-Wynberg case helped keep autism issues on the forefront of political consciousness across Canada. The families' tremendous sacrifices, and that of their legal counsel, were undoubtedly very substantial. What is crystal clear, after the decisions in Auton and Deskin-Wynberg is that families seeking public policy assistance for their autistic children will have to take their concerns to the political arena.

The realities of politics often come down to numbers. Although autism is increasingly recognized as widespread with 1 in 150 persons now estimated to have some type of autism spectrum disorder those numbers will have to be translated into some degree of political influence. 1 in 150 does not sound like an overly strong hand to play but it is actually somewhat larger than that. Most people on the autism spectrum will have parents, siblings, relatives, family friends, personal friends who might vote based on the interests of the autistic loved one in their life. That expands the potential "autism vote" substantially and might be used to some effect in close political and federal ridings to try and pressure politicians to do what their consciences - and the courts - have not required them to do - treat, educate and provide decent residential care for autistic persons in need.

The future will tell whether autism numbers can be translated into political influence and gains for autistic persons and their families. For the present I would like to again personally thank the families, and the legal counsel, in the Deskin-Wynberg and Auton cases for the tremendous contributions they have made to the cause of autism in Canada.