Showing posts with label Medicare's Orphans. Show all posts
Showing posts with label Medicare's Orphans. Show all posts

Saturday, February 09, 2013

Medicare's Orphans: Jean Lewis On The Struggle for Autism Treatment In Canada

The video and clip below are from the Medicare for Autism Now web site and feature MFAN co-founder Jean Lewis, one of Canada's foremost autism advocates, providing an articulate, personally informed summary of the struggle for autism treatment in Canada.  

Jean keeps the discussion on a non-partisan level and discusses the fight to end Canada's inhumane and  discriminatory exclusion of treatment for those with autism disorders in the context of other historic struggles for liberation from discrimination based on race and gender. A very important point to remember in Jean's message is that such struggles are never overnight affairs.  They are essentially political wars which involve many battles before the wars are won.  

For those of us who are parents it is difficult  but it is, and always will be, necessary to stay engaged in the battles, to continue the fight and to assist newcomers who need to join the political armies fighting for a humane, Canadian  government to fulfill the promise of Medicare of which Canadians are justifiably proud  and ensure coverage of evidence based treatment for autism disorders. 

Jean Lewis, co-founder of Medicare for Autism Now and Civil Rights Now and co-producer of Medicare’s Orphans discusses the purposes of the film — which are provide a detailed history of the autism treatment movement, and to help maintain momentum in the campaign for justice.

 

Monday, December 03, 2012

Medicare's Orphans: Autism and Civil Rights Activist David Marley and The Fight For a National Autism Strategy



Medicare for Autism Now! has released episode 10 of our "Medicare's Orphans" web-series. This episode features Medicare for Autism Now, Civil Rights Now and co-producer of "Medicare's Orphans", David Marley. David is a former trial lawyer and long-time political activist. In this 25 minute interview, he discusses why it is crucial for Canadians, particularly parents and families of autistic children to become politically engaged.


As a parent I have advocated, together with other parents, for over a decade for a real National Autism  Strategy. Here in New Brunswick our advocacy involved working with former Fredericton MP Andy Scott over a decade ago for development of a National Autism Strategy which resulted in a strong commitment by Andy as reported by Tali Folkins in the Telegraph Journal on October 20, 2003:

"Fredericton MP Andy Scott said Saturday he has been lobbying prime- minister-to-be Paul Martin for a federal program to help young children with autism. "I desperately want a national autism strategy - and let me just assure you that Paul Martin knows it," Mr. Scott told supporters at a party celebrating his 10th anniversary as an MP in Fredericton Saturday evening.

Early work by therapists with young autistic children, Mr. Scott said, can make a big difference in their capacity to lead fulfilling lives as adults - and can save money in the long run. But the costs of starting such early intervention programs are high and should be borne directly by Ottawa rather than each individual province, he said. "We have responses and therapies and so on that I genuinely believe can work," he said. "You're going to save millions of dollars over the lifetime of an autistic adult. If you can get in at the front end, you can make enormous progress.

"But it's very expensive, and there's not a lot of stuff being added to Medicare, generally - that's why we have catastrophic drug problems and other things," he said. "In the province of New Brunswick, P.E.I., or even Quebec or Ontario it's very, very expensive. The feds are going to have to step up to the plate." "


As reported on Facing Autism several times Andy Scott, with NDP MP Peter Stoffer, and other MP's, was ultimately successful in getting a National Autism Strategy motion passed in the House of Commons. That effort was important in obtaining recognition of the need for a national autism strategy but it did not provide what parents of autistic children were fighting for from BC to Nova Scotia: a federal commitment to provide Medicare funding for ABA which to date remains the only evidence based effective intervention for autism.

The federal government has done nothing, absolutely nothing, to address the real needs of autistic children, school kids with autism or adults with autism needing assistance in the workplace or needing residential care. The federal government has done nothing to help those adults with severe autism who need 24/7 residential care and treatment. The federal government has stayed outside the battle content to hide behind constitutional jurisdiction line while ignoring the challenges faced by autistic Canadians and their families.

The fight for a real National Autism Strategy, one that includes medicare coverage for autism treatment has been long and difficult. I have met David Marley on several occasions, and very much appreciate having David with his his commitment and determination in our corner.  The fight for a real National Autism Strategy, a strategy built on inclusion of evidence based ABA treatment for children with autism disorders in our national Medicare has not been easy.  It is not easy now and will not be easy in the future.  We need everyone to pull together and fight.  

The current government, despite having within its ranks Alberta MP Mike Lake, father of an autistic son, is ideologically opposed to taking positive steps to ensuring that all children with autism, not just those living in Alberta, receive treatment under Medicare.

The Toronto Star reports that children in Ontario wait up to 4 years for therapy: The Autism Project: Children face up to four-year wait for therapy.  The significance of a 4 year wait is that children in Ontario are not receiving treatment during the critically important early years of 2-5.  In Ontario, early intervention for autism is largely non existent. The most effective treatment for autism is not generally available in Ontario.

Canada's 1 in 88 autistic children are, for the most part, doomed to move through the critical early years without the medical intervention they need.  The fight for medicare coverage for autism must continue and we need strong leadership, strong advocates.  David Marley has been answering the bell in this fight for many years.  Join David Marley and the Medicare for Autism Now! team, join the political fight to help Canadians with autism disorder receive the effective, evidence based autism treatment.  

Tuesday, November 13, 2012

Lia Marinoiu On Life With Simon; Her Brother With Severe Autism Disorder



"Lia Marinoiu lives in the Toronto area. She is an extremely mature and articulate 19 year old sister of her untreated, severely autistic younger brother. She describes the impact on every facet of her life, currently and in the future, of growing up with an untreated sibling. She offers straight talk about the failures of our politicians and why Canadians not directly affected should care about this issue."

 Medicare for Autism Now: Medicare's Orphans, Episode 9, Lia Marinoiu

Monday, October 29, 2012

Medicare for Autism Now: Shelley Davis Behavioural Consultant and Attorney


From the Medicare for Autism Now web site and the film Medicare's Orphans: A Film About the Fight to Get Healthcare for Children with Autism in Canada an interview with Shelley Davis:

Shelley Davis is a US based Behavioural Consultant who has consulted to BC families for the last 15 years. She is also a practicing attorney. She reviews two US laws – the IDEA (Individuals with Disabilities Education Act) and the ADA (Americans with Disabilities Act) and how determined parent advocacy attained both. She describes the stark contrast in approach and delivery of autism treatment between California and BC. In her experience the only reason for improvements in BC was the result of the work and advocacy done by the original FEAT of BC (Families for Early Autism Treatment) parents. However, in her view, we’re still at the very beginning of the process. We need to continue to work together and have high expectations because it so too easy for children with autism to be pushed aside.

Monday, November 14, 2011

Autism Parents: "You Need To Take Your Heart In Your Teeth And Go On ... And Go On"

"For those parents who say they are too broke and too tired...you need to take your heart in your teeth and go on...and go on...." 


Stefan Marinoiu, Medicare's Orphans


David Marley, Simon Marinoiu, Jean Lewis, 2008

The above comment by Stefan Marinoiu, father of a severely autistic son, Simon Marinoiu,  is great advice for parents of autistic children.  It is the advice of a man who has literally walked that path and knows of what he speaks. As the parent of a severely autistic son I do not always want to hear from people who know nothing of the realities of severe, low functioning autism disorders telling me what is best for my son or what I must do to help him.  When I listened to Stefan Marinoui though I was listening to one who knew of what he talked, one who had quite literally walked the walk.

On January 31, 2008 in the middle of a cold Canadian winter Stefan Marinoiu left his home in the Toronto suburb of Scarborough and began walking with only the clothes on his back to Ottawa to raise awareness about the lack of services for people like his son Simon, a strong young man with limited communication abilities and serious behavior issues. When Stefan arrived safely in Ottawa, after receiving help from well wishers he met on his journey, he met with then Health Minister Tony Clement. 

Unfortunately Tony Clement, and the government of Prime Minister Stephen Harper were not genuinely moved by Stefan's journey. They have done absolutely nothing to ensure that  all autistic children in Canada received evidence based ABA treatment for their autism. They have done nothing to ensure that autistic adults in Canada have access to decent residential care and treatment. Gazebos, prisons, jet fighters sure, but not real help for autistic Canadian children or adults.

I met Stefan and his wonderful family when I, along with Jean Lewis and David Marley of Medicare for Autism NOW!, visited their home in the Toronto area in 2008.  Stefan is a modest person of great focus and presence.  There is no hidden agenda. His concerns are clearly and succinctly expressed in compelling language as in the advice quoted above.  I was deeply moved by the Marinoiu family, for the love they have for Simon, by their struggles to help him and by the impact Simon's autism has had on their lives.

In Medicare's Orphans Stefan, wife Bernadette and daughter Lia speak about what Simon's autism is like and what it has meant to them, the impact it has had on the members of their family.  If you watch this film and listen to Stefan, Bernadette and Lia, you will be moved.  Listening to their stories again strengthens my resolve to continue advocating for my son Conor and other children and adults with autism disorders. It strengthens my resolve to fight for early intervention, effective, real education and decent residential care for autistic children and adults here in New Brunswick and across Canada.

If you are a parent of a child with an autism disorder I encourage you to view the Medicare's Orphans film and "take your heart in your teeth ... and go on ... and go on".

Thursday, November 10, 2011

Medicare Coverage of ABA Treatment for Autism Is Important Because ...


Please watch Medicare's Orphans which details the fight for inclusion of health care treatment for autism disorders in Medicare in Canada and specifically the fight for medicare coverage of ABA. The medicare coverage of  ABA treatment for autism disorders is important because:

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 (underlining added-HLD)
American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders


The AAP 2007 report  Management of Children with Autism Spectrum Disorders was reaffirmed  by the AAP in September 2010:


REAFFIRMED
Clinical Report: Dealing With the Parent Whose Judgment Is Impaired by
Alcohol or Drugs: Legal and Ethical Considerations. Pediatrics. 2004;
114(3):869 – 873. Reaffirmed September 2010

Clinical Report: Identification and Evaluation of Children With Autism
Spectrum Disorders. Pediatrics. 2007;120(5):1183–1215. Reaffirmed
September 2010

Clinical Report: Management of Children With Autism Spectrum Disorders. Pediatrics. 2007:120(5):1162–1182. Reaffirmed September 2010

Saturday, November 05, 2011

New York State Now Requires Insurers to Cover Treatment for Autism Disorders


While this Canadian autism father is annoyed by media attention given to Canadian researcher  Laurent Mottron's perpetual crusade to recreate autism disorders in the image of his mentor Michelle Dawson, and trivialize the plight of the 70% of persons with Autistic Disorder and intellectual disabilities, there is good news south of the border to brighten the day.  In New York state BuffaloNews.com reports that our sensible American neighbors have passed legislation requiring insurers in that state to cover treatment for autism disorders:

A measure requiring health insurers to cover autism disorders was signed into law Tuesday, making New York the 29th state to enact such coverage mandates for the complex neurobiological disorder ... The legislation, signed into law by Gov. Andrew M. Cuomo, was approved unanimously by both legislative houses in June.


Dr. Mottron must surely be disappointed that US states are moving to provide insurance coverage for autism treatments that he and his mentor Michelle Dawson opposed at the Supreme Court of Canada in the Auton case where she intervened as an "autistic" in an effort to prevent the British Columbia government from being required to fund ABA treatment for autistic children.  (Dawson's request for intervenor status was backed by Dr. Motton's affidavit in support).


The American Academy of Pediatrics and experts are referenced in the BuffaloNews article supporting early treatment for autism:


"The American Academy of Pediatrics says that there is no cure for autism-related disorders but that children, with treatment, can progress and learn new skills. Experts say early diagnosis is key to helping improve conditions for children afflicted with autism. "


The AAP has previously given clear guidance on effective treatments for autism:



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


The AAP 2007 report  Management of Children with Autism Spectrum Disorders was reaffirmed  by the AAP in September 2010:



REAFFIRMED

Clinical Report: Dealing With the Parent Whose Judgment Is Impaired by
Alcohol or Drugs: Legal and Ethical Considerations. Pediatrics. 2004;
114(3):869 – 873. Reaffirmed September 2010

Clinical Report: Identification and Evaluation of Children With Autism
Spectrum Disorders. Pediatrics. 2007;120(5):1183–1215. Reaffirmed
September 2010

Clinical Report: Management of Children With Autism Spectrum Disorders. Pediatrics. 2007:120(5):1162–1182. Reaffirmed September 2010

Unfortunately in Canada the views of Dr. Laurent Mottron and his mentor Michelle Dawson concerning ABA treatment of autism disorders hold great sway with the government of Prime Minister Harper which invited them to the national autism symposiums from which Canadian ABA advocates were banned despite having fought for a national autism strategy which led to the symposiums. 

In Canada the fight for ABA coverage for autism disorders continues though and determined parents and professionals will not give up. Although the mainstream media loves the feel good picture of autism created by Neurodiversity ideologues like Mottron and Dawson a history of the struggle for treatment for our autistic children can be found online at Medicare's Orphans

Thursday, November 03, 2011

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


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.

Tuesday, November 01, 2011

Medicare's Orphans: The Fight for Healthcare for Children with Autism Disorders

Medicare's Orphans – A film about the fight to get healthcare for children with autism in Canada  is now online.  I encourage everyone with an interest in autism disorders, anyone interested in advocating for treatment and cure for this serious neurological disorder to view this film. I make a few appearances in this film. It was an honor to participate in this effort with each and everyone of those featured.  
In particular, I had the opportunity a few years ago to meet the Marinoiu family from Toronto. Their son Simon is very similar to my son Conor. I was deeply moved by my experience meeting this wonderful family. Simon's life, his future, is very close to what can be expected for my son here in New Brunswick where our system of adult care for people with severe autism disorder challenges has been frozen by a non evidence based community cliche movement that prevents any serious discussion of adult care beyond the group homes that currently can't handle the challenges presented by severe autism. The result is that severely autistic adults like my son live in a psychiatric hospital in northwestern New Brunswick.

To confront the very real challenges for Canadians with autism disorders it will be necessary for new generations of Canadian parents, and sympathetic professionals, to step up to the plate and fight. The fight has been taking place for years.  The fight must continue. Parents in particular must begin again to fight for our children.  

Begin by watching Medicare's Orphans. 

Monday, October 17, 2011

Determined Autism Advocates Jean Lewis & David Marley Fight for Medicare Coverage for Autism Disorders



David Marley and Jean Lewis of Medicare for Autism Now!
Oakville, Ontario, 2008

David Marley and Jean Lewis of Medicare for Autism NOW! have been fighting for medicare coverage of evidence based treatment for autism disorders for many years.  I first met them in Halifax in May, 2007 and again in Oakville and Toronto in April, 2008.  Last year I had the privilege of seeing them again in Toronto while they were working on the film Medicare’s Orphans: Canadians Unworthy of Treatment  which is expected to set out the case for medicare coverage of autism treatment in Canada. The video below features Jean and David interviewed by radio host Bill Good.  It is the last trailer for the Medicare's Orphans film expected to be released this fall.




Saturday, August 06, 2011

Medicare's Orphans Trailer 1: The Hudson Family Sacrifice for their Child with Autism



This video is the first trailer for Medicare's Orphans by Medicare for Autism Now! which will examine Canada's shameful exclusion of autism treatment from Medicare coverage and the consequences for autistic children and their families. It provides a brief overview of the sacrifices made by the Hudson family, of the greater Toronto area,  to help their autistic child live the fullest, most independent life possible, sacrifices made all the larger by Canada's large scale neglect of autistic children and their need for effective, evidence based treatment.