Showing posts with label Medicare for Autism NOW. Show all posts
Showing posts with label Medicare for Autism NOW. Show all posts

Thursday, March 28, 2013

Jaden Lake's Autism on the Hill Rally - Well Done Jaden!


Edmonton MP Mike Lake, whom I have met (at IMFAR 2012 in Toronto) and communicated with a few times about autism in Canada, have different perspectives on the proper role for Canada's national government in addressing Canada's autism crisis.  The government of Stephen Harper, of which Mike Lake is a member,  is not a strong supporter of Canada's national medicare system generally and has done nothing to advance in a meaningful way the National Autism Strategy advocated for by former and present opposition MP's Andy Scott,  Peter Stoffer, Shawn Murphy and Glenn Thibeault and by Senator Jim Munson.   I know though that Mike Lake is a dedicated father and a strong advocate for his 17 year old autistic son Jaden, who appears to have many similarities to my own son with autism of the same age.  I enjoy seeing Jaden in television and video appearances and was pleased to read the Ottawa Citizen article about the Autism on the Hill Rally and the pictures featuring Jaden Lake.

Thank you for advocating for autism awareness and services Jaden! Well Done!

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.

Friday, August 31, 2012

Experienced Clinical Child Psychologist On Increases in Autism Diagnoses, Importance of ABA Treatment



From the Medicare for Autism Now! web site:

Dr. Glen Davies is a clinical child psychologist who has practiced in the Vancouver area for over 25 years. Today, over two-thirds of the children seen in his clinic are on the autism spectrum. In his 16 minute interview, Dr. Davies comments upon the dramatic increase in autism diagnosis over the last two decades. He discusses the transformational impact of ABA treatment, as well as the relative costs of not providing treatment – to autistic children, their families and society at large.

Dr. Davies is a clinical psychologist with actual experience working with children with autism. There are lots of purely academic, research psychologists working solely with abstractions and epidemiological statistics. It is important to listen to  experienced clinical psychologists like Dr. Davies, psychologists who understand the realities and challenges of autism disorders and the best known way to address those challenges ... ABA treatment.

Friday, August 10, 2012

1 Year Limit On ABA Treatment for Autism Forces Mother to Leave Nova Scotia for Alberta


A Nova Scotia mother with an autistic son is planning to "go out to Alberta" where ABA autism treatment services are not, as in Nova Scotia, limited to one year.  Does Canada need Medicare for Autism NOW?  No question about it.  Nova Scotia, for those who don't know, is also the province which became notorious for distributing ABA services for autism on a lottery basis. 

I was born in Nova Scotia's Annapolis Valley and return  periodically to visit family. It is a beautiful province with some wonderful people but it's government has not made proper treatment of autistic children a significant priority.  Canada needs Medicare for Autism Now so that more families with autistic children are not forced to leave provinces like Nova Scotia or New Brunswick which is now, under the Alward government,  effectively dismantling many of its autism services.

Monday, July 09, 2012

Medicare for Autism Now Interviews Harold Doherty

This is the video of my interview on Medicare for Autism Now! Since that interview a US Federal Court Judge has ordered Florida Medicaid to provide Medicaid coverage of ABA for autism. California has mandated insurers to provide ABA coverage for autism and the US federal government has done the same thing in respect of US federal government employees. Meanwhile back in Canada .... nothing ... or worse. 

The sham autism symposium held after a panic stricken Canadian government cancelled a real national autism symposium in order to screen out and prevent real autism activists from attending has resulted in absolutely no gains for autistic Canadians. Little progress has been made across Canada and in some provinces, like New Brunswick under the current administration, we are actually seeing gains slip away. 

We need a new generation of advocates to step forward and join the fight for autistic children and adults. We need YOU!

adults.

Sunday, July 01, 2012

Happy Canada Day! Now Let's Start Addressing Canada's Autism Crisis



Happy Canada Day EVERYONE! 
Including Canadians With Autism Disorders!

I can not imagine living in any other country in the world.  As much as I love our great neighbors to the South, I would not want to live in any country except Canada. I do not pretend, however, that Canada is perfect, not at all. It is impossible for me as the father of a severely autistic son, now 16 years of age, to ignore the exclusion of autistic children and adults in Canada from coverage for treatment of their serious neurological disorders, their autism disorders, under our so called "universal" health care system.   

As much as I love my country I admire our American neighbors for the leadership they have shown in dealing realistically with autism disorders.  ABA was applied and developed in the US as an autism intervention by Dr. Lovaas and remains the only solidly evidence based effective intervention for autism disorders. ABA has been endorsed in a recent US federal court decision requiring Medicaid coverage of ABA for autism in Florida.  US federal government employees now have medical insurance coverage of ABA for autism. 

Meanwhile in Canada,  autistic persons remain excluded from Medicare coverage for ABA.  We held one sham, orchestrated, (ABA 4 autism advocates, including me, were excluded)  National Autism Symposium that produced no tangible results and no road map for future efforts to help Canada's autistic children, youth and adults. Canadian autistic children who are fortunate enough to receive ABA do so under a national patchwork of largely ineffective service delivery systems.  New Brunswick, once hailed as a leader in autism service delivery by US autism expert Dr. David Celiberti, is now regressing into "in house training" for early intervention and education assistants.  Living conditions for adults with autism are simple: those who are high functioning will be housed in a variety of locations including group homes with untrained staff, hospital wards and  rented hotel rooms.  Those who are severely autistic with intellectual disabilities will often live out their lives in psychiatric hospitals. 

In the US, where they are not asleep at the wheel, the CDC estimates that 1 in 88 have an autism spectrum disorder. It is now time for Canadians to wake up and start addressing our national autism crisis in an organized, concerted effort.  Let's start including Canada's autistic children and adults in our national agenda before the next Canada Day celebrations. 

I love you Canada. I hope you feel the same way about Canada's autistic children and adults ... and start showing it.

Monday, June 25, 2012

Jean Lewis, Canada's Foremost Autism Advocate, Provides Firsthand History of Canadian Autism Advocacy From an Experienced, Personal Perspective

I strongly encourage anyone with an autistic child or interest in autism services in Canada to watch this video by Jean Lewis, Canada's foremost autism advocate, who has lived and led much of the autism advocacy in Canada over the last decade. 

Jean is extremely well informed, articulate and authentic. She has lived the reality of severe autism and related disorders with her child and she, and her husband Michael, have fought with intelligence and determination to bring services to autistic children and adults in BC and across Canada.

 

Thursday, May 31, 2012

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?

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.

Wednesday, October 26, 2011

Medicare for Autism: Lewis and Marley Speak Up!



David Marley and Jean Lewis On the Need 
for Medicare Coverage for Autism Disorders

Jean Lewis, for 13 years, and David Marley, for 6 years, have been advocating, fighting is the better word given the powerful interests they have had to challenge, for medicare coverage of autism treatment in Canada. Autism disorders are exactly that ... disorders, very serious disorders in many cases, yet in Canada we do not consider intervention for autism disorders as treatments worthy of medicare coverage, we simply abandon our autistic children to the whims of social services bureaucrats in every nook and cranny of our very large nation.  

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.




Monday, August 29, 2011

Medicare's Orphans: Autism and the Marinoiu Family



This third trailer for Medicare's Orphans, scheduled for release this fall, features the Marinoui family.  While on a previous Toronto visit I had the pleasure of meeting Stefan Marinoiu and his lovely family: wife Bernadette, daughter Lia and son Simon who is severely affected by autism.  Stefan has twice risked his life, walking in mid winter from Toronto to Ottawa, and engaging in a hunger strike,  to bring attention to the autism crisis in Canada and the need for a real National Autism Strategy, one  which treats autism like a health disorder and provides treatment to all autistic Canadians. The trailer shows some of the anguish of this caring and courageous family that has struggled to give Simon the best life possible and to bring attention to his challenges.  They are challenges shared by many Canadian families with a member severely affected by an autism disorder.   

The Medicare for Autism Now! information release accompanying the trailer is a call for your support to end health care discrimination in Canada:

Meet Stefan, Bernadette, Lia and Simon Marinoiu. They live in suburban Toronto, Canada. Simon has autism and no longer lives with his family. His devastating situation represents the fate of many autistic children in Canada who are being denied effective treatment. Simon and his family are featured in the just released third trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in October.
www.medicareforautismnow.org

The film chronicles the stories of a number of families with autistic children from across Canada, each share the same problem - lack of access to effective autism treatment (ABA/IBI) via our "universal" health care system.

The film exposes some painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children, to move the cause forward, and to end health care discrimination in Canada in this generation.

To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to: www.medicareforautismnow.org

Please forward this link, post it to your Facebook walls, and ask others to do the same. Also - very important - send it to your MLA and MP.

Thank you for your support.

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.

Wednesday, May 04, 2011

Harper Majority Means No Real National Autism Strategy 4 At Least 4 More Years


Photograph by: Blair Gable, Reuters

Canadians are waiting to see what Stephen Harper does with the very solid majority that Canadians voted to give him on Monday.  One thing they will not have to wait for during the Harper majority years is a Real National Autism Strategy.  I am not a fan of Stephen Harper and I do not trust him on important issues like health care.  What I do not question is his opposition to any serious role for the federal government in ensuring that autistic children and adults across Canada receive effective evidence based treatment for autism,  a real education or decent, autism specific residential care. 

Citing Constitutional grounds Harper's team led by Mike Lake, father of an autistic son,  have consistently refused to get involved in any meaningful effort to help autistic Canadians.  The recent declaration by prominent British Columbia Harper cabinet minister James Moore that autism is not a disability calls into question Mike Lake's autism awareness efforts within his own party but leaves no room for doubt.  There will be no help for autistic Canadians, no Medicare for Autism, no Real National Autism Strategy during a Harper administration.  Any efforts to bring about a Real National Autism Strategy must look to the future until after the Harper majority has run its course.

Monday, April 11, 2011

Election 2011: Medicare for Autism Now! for Autism and Medicare Coverage


If you are concerned about autism treatment and services in Canada I recommend the Medicare for Autism Now! site as your first information gathering stop about autism and medicare. During this election MFAN is the best site to find  information about autism and medicare in Canada. The MFAN site  provides important information about how to advocate for medicare coverage of autism during Election 2011.   

The major media and experts in Canada have done little beyond telling Canadians that we don't really want an election, that for some bizarre reasons unknown to me Canadians are concerned about a coalition government or whatever trick the Harper Party is using to occupy an easily distracted mainstream media.  What the media doesn't often mention, if at all, are the social issues that make Canadian society a decent place in which to live including our national medicare system which Stephen Harper has long opposed.  With a minority government Harper could only play defense, refusing to address serious national health issues like ... autism.  If Stephen Harper wins a majority government look for our national healthcare system to be dismantled.   The increasingly Harper Blue  CBC has commented on the issue of health care on its web site in a dismissive, superficial manner, but has provided no serious analysis and does not acknowledge the Harper Party contempt for a strong federal healthcare system.

Canada's national autism crisis has grown under the Harper government with a postponed, then rigged, sham national autism symposium and little in the way of real autism awareness.  If your only source of information about autism spectrum disorders was the Harper government you would be seriously ignorant about the realities of autism disorders, the lives restricted by autism or even the fact that Canadians with autistic children who  can choose move to provinces where some autism services are available.  New Brunswick, thanks to a strong parent advocacy movement and some conscientious political leadership from both the Conservative government of Bernard Lord and the Liberal government of Shawn Graham, has a better early autism intervention service than most Canadian provinces.  For that reason some military families with autistic children have requested postings to CFB Gagetown, New Brunswick. Autism is very much a national issue in Canada and the "see no autism, hear no autism, speak no autism" policy of the Harper government can't change that autism reality.

Given the lack of serious media attention  to health care and other social issues during #elxn41 the internet, blogs, Facebook, twitter and other social media are the major source  of discussion of medicare and specific health issues like autism.  This blog will attempt to provide some information and commentary to help.  The best site to follow autism and medicare issues though will be the revamped Medicare for Autism Now! site. 

Saturday, March 26, 2011

Time for a REAL National Autism Strategy! Time for Medicare for Autism NOW!


Autism is rising. Autism has been rising for the past decade.  Since my son's autism diagnosis 13 years ago the numbers, as recognized by the CDC in the United States, have changed from  approximately 1 in 500 to 1 in 110.  It is long past time that Canada had a REAL National Autism Strategy, one which recognized the need to deal with autism seriously, across Canada, and stop using it as just another political football.  Autism disorders are exactly that, they are neurological disorders listed in the Diagnostic and Statistical Manual of the American Psychiatric Association. Autism disorders restrict the lives of many who suffer from them. Some autistic Canadians, on the high functioning end of the spectrum, need little or no assistance and can function well in any capacity from postal worker to researcher but many need a REAL national autism strategy and this election is the time to start serious efforts to provide one.

It is time that evidence based effective interventions for autism disorders, soon to be combined under the designation Autistic Disorder in the DSM5,  be specifically covered under our national medicare scheme. Canadian children with autism should not be disadvantaged by the particular province or territory in which their parents reside.  Canadians should not be forced to choose which province to live in based on which province offers the best treatment services for their autistic children.  In THIS federal election it is time to move forward with our thinking and specifically and expressly provide funding aimed at provision of autism treatment services in every corner of Canada.  If you are a concerned parent, family member or friend of an autistic child raise the issue of Medicare for Autism with your federal election candidates. 

The numbers of autistic adults are growing in Canada and a real national autism strategy must also address the need for appropriate, decent residential care for many of them. Our national attention has very appropriately been focused more and more on the need to provide accommodation for our elderly population. It is time to pay attention to the nearly 1% of Canadians with autism disorders and those of them that will require residential care and treatment. 
 
Speak up now for Medicare for Autism in Canada.  Speak up now for a REAL Canadian national autism strategy.

Take action.  Do it now. In this 2011 Canadian federal election.

Friday, March 11, 2011

A REAL Canadian National Autism Strategy Under A Harper Government?


As I have twice indicated on this blog I was pleased to be invited to attend the Autism Speaks Canada national autism strategy discussion in Banff, Alberta.  Although unable to attend in person I did participate via teleconference and offered my two cents worth on some of the important issues which should be addressed in any national health care strategy.  I participated, however, knowing full well that under a Stephen Harper government no REAL National Autism Strategy would be permitted.  Stephen Harper has been an opponent  of Canada's public health care system long before becoming Prime Minister of Canada.  His views are the views of the current version of the federal Conservative Party and no exception will made to ensure a strong federal government effort to address Canada's Autism Crisis.

This week has seen questionable action taken by the Harper government to have a National Health Act review conducted ..... not by the elected House of Commons where the last such review was conducted and where the Harper Party is in a  minority .... but in the unelected Senate where the Harper Conservatives hold a majority. The move, as detailed by the National Union of Public and General Employees, is  part of an ongoing campaign to diminish and possibly destroy any federal government role in funding of health care in Canada.  Organizations which call for a stronger federal government role in health care have already been told they will not be permitted to appear at the Senate review:

"NUPGE President James Clancy criticized the Harper government for sending a review of the 2004 Health Accord to the unelected Senate rather than allowing elected Members of Parliament to conduct public hearings.


Ottawa (11 Mar. 2011) - The National Union of Pubilc and General Employees (NUPGE) is criticizing the Harper governments decision to have the unelected Senate conduct the second mandatory review of the 2004 Health Accord (for more on Health Accord and federal transfers click here).


The previous review was conducted in 2008 by the House of Commons Standing Committee on Health. This moves the review outside of the elected House of Commons, where the Harper government is in a minority, to an unelected Senate committee where the Conservatives are now in a majority.


"What does this government want to hide from the public in this action," asks NUPGE President James Clancy. "Why won't the prime minister allow elected Members of Parliament to review his record on health care?"


Clancy pointed out that the move sends a bad signal about the future of public health care and Canada's democracy.


"This is one more example of the prime minister's anti-democratic nature. He sees the House of commons as a nuisance to be shoved aside. He'll do anything to bypass the democratic process," said Clancy.


The unelected Senators clearly hope to get the review done as quickly as possible. Hearings have already started in the Senate Committee on Science, Technology and Social Affairs.


A number of organizations that are calling for the federal government to play a stronger role in health care have been told they will not be allowed to appear and give testimony.


"The message for Canadians is clear: The Harper government not only holds Parliament in contempt, it also seems to view Canadians who strongly support public health care with contempt as well,” said Michael McBane, National Coordinator of the Canadian Health Coalition.


In the build-up for negotiations for the renewal of the Health Accord in 2014, some members of the Harper government have started to hint about making cuts to health care transfers. One prominent caucus member, Maxime Bernier, has publicly called for a termination of all federal health care transfers."

The opposition by the governing federal Conservatives to a federal role in health care bodes ill for a real, successful National Autism Strategy. Such a strategy requires non-partisan political support in order to succeed.  An example of non-partisan support for autism strategy exists here in New Brunswick.  Our province  has been recognized as a leader in the provision of autism services as set out in the following letter from the web site of the Association for Science in Autism Treatment's David Celiberti:.

ASAT Responds to Canadian CBC's "N.B. Can Be a Leader in Autism Services


Saturday, October 23, 2010


I read with great interest your recent article about the state of services in New Brunswick (“N.B. Can Be a Leader in Autism Services," September 14, 2010). I do beg to differ about the title of the piece. New Brunswick is already a leader. To have amassed 800 trained agents of change in six years is nothing short of incredible and inspiring, particularly given the diversity of your province with respect to geography and language. Other Canadian provinces can look to New Brunswick for an exemplary model of how things could and should be for children with autism and their families.


There is a misconception that services in the United States are superior to that of our neighbors to the north. I can assure you that children with autism in rural areas and in economically depressed areas of the U.S. do not always access state of the art, science-based treatment such as those based on applied behavior analysis. In many cases throughout the US, children with autism receive poor quality behavior analytic services that may be lessened if providers were able to access more intensive training and networking opportunities similar to what is being offered in your province. Part of the Association for Science in Autism Treatment (ASAT)'s mission is to help close that gap through information dissemination, and we are keenly interested in the efforts of leaders like yourself developing, implementing, and evaluating systems.


And like other true leaders, you have looked critically at your accomplishments with an eye toward making every year of service delivery better than the previous year. We applaud your recognition that treatment parameters such as intensity need to be tailored to each child to maximize gains. When resources are scarce, this individualization can be an arduous task, but nonetheless critically important. Equally important is the need to communicate to government officials, tax payers and other stakeholders that immense financial savings are attached to doing right by our children when they are young.


It is unfortunate that funding for parent training is not more abundant. Optimal outcomes for children with autism are predicated on the support of educated, informed and skillful parents. Promoting carryover, ensuring consistency, and enhancing skill development across all environments are crucial roles for parents, but parents require support and training to assume these crucial roles. Your stated concerns and insights about the dearth of services for adults are much appreciated, and reflect the challenges that we have here in the U.S as well.


Families of children with autism in New Brunswick are blessed. Keep fighting the good fight.


David Celiberti, Ph.D., BCBA-D, President
Association for Science in Autism Treatment

Although much work remains to be done here in New Brunswick much has been accomplished. There are many reasons why this small relatively poor province has achieved some good results.  A strong parent advocacy movement has been critically important along with  the involvement of well informed, conscientious professionals.  At the end of the day though programs have been put in place by government and therein is one of the important elements in New Brunswick's autism success to date.  Our provincial autism strategy has been a non-partisan effort with both governing parties contributing significantly.

New Brunswick's dominant political parties, the Liberals and the Conservatives, have both been actively involved in improving autism services.  Many of our autism services began during the Conservative government of Premier Bernard Lord. They were improved upon during the Liberal government of Premier Shawn Graham.  Autism in New Brunswick was taken seriously by both of our governing parties over the last 10 years.

Federally however only the NDP and the Liberal party have shown an inclination to move toward a REAL National Autism Strategy.  The sovereignist Bloc Quebecois will not accept any federal role in setting national health care priorities. They are joined by the  Conservatives, currently our governing party, who are fundamentally opposed to our national medicare system.  I wish it were not so but the ideological opposition of the Harper Conservatives towards our national health care system  leaves absolutely no room  for a REAL National Autism Strategy.