Canada Needs A REAL National Autism Strategy: Medicare for Autism NOW!

A Medicare for Autism Now! Rally was organized by FEAT-BC 

and held in Halifax, Nova Scotia on May 26, 2007.

Shawn Murphy,  Jim Munson,  Andy Scott

Former PEI MP Shawn Murhpy, New Brunswick Senator Jim Munson and the late Andy Scott a former Fredericton NB MP all advocated actively for a REAL National Autism Strategy with Shawn Murphy presenting an unsuccessful provvate member's Bill C-304,  to include autism treatment in medicare coverage and then Fredericton MP Andy Scott working with Nova Scotia MP Peter Stoffer to intoduce a National Autism Strategy bill which was passed and put the issue on the national agenda although no serious efforts have been made since then. Senator Munson chaired the Senate review of autism services in Canada and issued the Pay Now or Pay Later Report.

Nova Scotia MP Peter Stoffer co-sponsored a national autism bill with  NB MP Andy Scott.

Fredericton MP Andy Scott with Jean Lewis of FEAT-BC and Medicare for Autism NOW!.

 Jean was and IS a determined advocate for Medicare coverage of Autism treatment.

The photos above were all taken at the Medicare for Autism Now! rally at Halifax, May 26, 2007 organized by Jean Lewis and her fellow advocates from British Columbia.  Medicare for Autism Now! has remained active since then and remains one of the few legitimate national autism organizations in Canada.  Under the current government charities seeking to maintain their charitable status dare not address the need for a real National Autism Strategy for fear of losing their charity status. 

The fact is that the current government has accomplished nothing of substance in addressing national autism issues. In 2015 Canadians must still rely for information about the prevalence of autism disorders  on US figures.  There is no discussion of taking steps to ensure that children in each Canadian province.  There is very little discussion of media reports of families moving across Canada and to the US seeking autism treatment for their autistic children.

Autism Canada, the newly formed entity rising from the merger of the Autism Canada Foundation and Autism Society Canada, and Autism Speaks will not advocate for Medicare coverage of autism disorders.  They will not risk their charitable status and funding for their organizations. With a federal election looming it is time for serious national autism advocates to speak up and advocate for autism treatment coverage under Medicare. 

Stephen Harper and Mike Lake, a well known Conservative MP who appears to be a good guy and a great father of an autistic son have done nothing to help autistic children across Canada not one damn thing.  They both say, correctly, that health care is within provincial constitutional jurisdiction and they are right.  What they both ignore is the concept of co-operative federalism a concept which once existed in Canada and can be restored with a new government in place.

Medicare itself came into existence in this country via federal provincial cooperation and it can be amended to include autism treatment coverage by the same mode.  We need medicare for autism and we need it NOW!.

Manitoba Autism Crisis Demonstrates Need For A REAL Canadian National Autism Strategy

Canada, despite a private members motion championed by the late Fredericton MP Andy Scott and Nova Scotia MP Peter Stoffer which called for one, does not have a REAL National Autism Strategy.  The failure to enact a REAL National Autism Strategy means that in some provinces very few autistic children receive intensive early ABA intervention.

The  private member's bill, Bill C-304, introduced by former PEI MP Shawn Murphy, set out below was crushed by the Harper Conservatives and Quebecois MPs.   Had Bill C-304 passed 9 years ago many,  many more autistic Canadian children would have received early ABA intervention and made the substantial cognitive, linguistic and behavioral gains reported decades ago by Dr. Ivaar Lovaas and confirmed by studies and reviews since.

 Manitoba's Wait List Autism Crisis

One example of the checkerboard pattern of ABA service for autistic children in Canada is Manitoba as reported in the CBC article Autistic children's families frustrated by therapy wait-list:

"Some Manitoba families with autistic children say they might get turned away from a highly sought-after therapy program because they have been on a waiting list for so long, their children may end up being too old to qualify. Families that want access to applied behaviour analysis (ABA) therapy for their children must wait roughly 1½ years on a list. The program is available only to children under the age of five. With the waiting list so long, some children may end up being too old to qualify for ABA, meaning they would be turned away this September.

"I just can't imagine where kids are going to wind up without having ABA," said Guy Mercier, president of Manitoba Families for Effective Autism Treatment. "Without ABA in my son's life, he wouldn't be where he is."

The ABA program gives children three years of intensive therapy, teaching them social skills and life skills before they enter kindergarten. It also provides support for five years while they are in school.

Samantha Bawtinheimer said she placed her 2½-year-old son, Noah, on the waiting list for ABA soon after he was diagnosed with autism last September.

Bawtinheimer said she is frustrated by how long it will take for Noah to get into the program. "You're supposed to be there to protect them. You're supposed to be there to help him. I can only do so much," she said. "I've done my research. I can't do it all. I still have to work, I have to provide for him. I can't do it all. I need their help."

The Manitoba situation proves the need for a real national autism strategy. 

History of the Struggle for A REAL National Autism Strategy

The struggle for a REAL National Autism Strategy is summarized following from a commentary on this site on March 29, 2014:

In The Courts Autons (BC) and Wynberg/Deskin (ONT)

Canadian parents fought initially , and ultimately unsuccessfully, through the courts in BC (Auton) and Ontario (Wynberg/Deskin) for autism treatment coverage under medicare and autism services before commencing their more overtly political efforts, including the Medicare for Autism NOW! campaign.

History of the Struggle for a REAL National Autism Strategy in the Maritimes

Andy Scott Fredericton NB MP,  Peter Stoffer NS MP, Shawn Murphy PEI MP,  Senator Jim Munson NB

Here in the Maritime provinces we took a political approach to developing a national autism strategy with the NB efforts in  which I was personally involved beginning  in 2001, primarily by many discussions with our Fredericton MP, the late Andy Scott.  In 2003  Andy Scott, made a public commitment in 2003 to work toward a National Autism Strategy at a tribute to his 10 years of service as an MP at the Boyce Famers' Market, an event I attended and reported on to the members of the Family Autism Centre for Education (FACE):

"October 19 2003

Hello everyone:

Some good news for those interested in autism issues emerged last night  at the Boyce Farmers' Market in Fredericton New Brunswick as Frederictonian's gathered to pay tribute to MP Andy Scott's  10 years of service as an MP on behalf of Frederictonians and as an advocate for human rights, services for the disabled, and cultural harmony. Andy announced that he would be meeting with Paul Martin in the hopes of pursuing a national Autism strategy. Although health care is primarily within provincial juridiction some health issues, such as breast cancer, HIV, etc. have been approached on a national level because of the magnitude of the issues involved.  While we have all heard political promises in the past,  Andy Scott has a proven track record of commitment to, and follow through on, disabilities and human rights issues.  Great news.

Harold Doherty

Family Autism Centre for Education (FACE)"

Andy's comments at the Boyce Farmers' Market were also featured in a 2003 Telegraph Journal article by Tali Folkins:

"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." 

Andy did answer the call on behalf of autistic Canadians and  actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  However, the motion was essentially a commitment in principle with few obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  One of the specific items that the federal government did commit to in the motion was a national surveillance program, a program that would tell us how many Canadians now suffer from autism disorders.  It is a commitment that has still not been honored 8 years later. 

Andy Scott himself did continue the fight   as demonstrated in his June 5, 2007 statement in the House of Commons:

"Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians."

Jean Lewis, FEAT-BC, Medicare for Autism Now!

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007

Andy Scott's reference to his colleagues from Charlottetown and Sackville-Eastern Shore were  references to PEI's Shawn Murphy and Nova Scotia's Peter Stoffer both of whom, along with Andy Scott and Senator Jim Munson, also worked tirelessly toward achieving a National Autism Strategy.  The rally of which he spoke was a Halifax rally organized by Jean Lewis and FEAT-BC who had been raising autism awareness, lobbying politically and fighting for national autism coverage in the Courts for several years and continued to do so with its "Medicare for Autism NOW!" efforts.  I attended the FEAT autism really in Halifax and had the privilege of meeting Jean Lewis, several of the BC advocates and tireless Nova Scotia autism advocate Jim Young.  Under the BC leadership there have been subsequent national meetings in Oakville and Toronto.

NS MP Shawn Murphy, Senator Jim Munson, NB MP Andy Scott 

National Autism Rally, Halifax, May 26 2007

Nova Scotia MP Peter Stoffer,  National Autism Rally, 

Halifax, May 26 2007

In 2006 Shawn Murphy went on to introduce his own private member's bill, Bill C-304,  in the House of Commons which, if passed, would have put Canada well on the way to establishing a REAL National Autism Strategy:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Bill C-304 was defeated soundly by a coalition of Harper Conservatives and separatist Blog Quebecois votes in the House of Commons. During debates in the House of Commons Harper conservative MP Mike Lake from Alberta, the autism face of the Harper government, a father of an autistic son, fought against the Murphy bill and helped vote it down to defeat.  

The hard truth is that there will never be a real National Autism Strategy as long as the Harper government rules in Ottawa.  Nor will a REAL NAS emerge from national autism charities that were never part of the struggle for a national autism strategy to begin with and who do not acknowledge the efforts made by parents across Canada who fought hard and long for a National Autism Strategy. National charities dare not speak contrary to federal government policy for fear of risking their charitable status. 

A real National Autism Strategy, even a real, current estimate of the number of Canadians who suffer from autism disorders will not come into existence until the Harper government is retired from office and will only come into existence with parent driven initiatives for whom helping their autistic sons and daughters is their most important objective.   Until then we will have to accept US figures for autism prevalence.  Accordingly, let it be known:

1 in 68 Canadians has an autism spectrum disorder. (Many of whom still do not receive effective ABA early intervention)

Dear Mr Mulcair and Mr. Trudeau: If You Become Prime Minister Will Your Government Introduce A Real National Autism Strategy to Help all Autistic Canadians?

Mr. Thomas J. Mulcair
Leader of the Official Opposition New Democratic Party of Canada

Mr. Justin Trudeau
Leader of the Liberal Partty of Canada

Re:  Autism in Canada

I am the father of an 18 year old young man with severe Autism Spectrum Disorder and I have been advocating for the introduction and development of autism services in New Brunswick and Canada for more than 15 years since his autism disorder diagnosis at age 2.  As a resident of Fredericton New Brunswick I was one of a group of parent autism advocates who had the privilege of working with our former Liberal Member of Parliament, the late Andy Scott, towards development of a real National Autism Strategy.  Andy, as he was invariably referred to by Frederictonians, was a man of principle, but also a shrewd  pragmatist who. after years of hard work, was successful in seeing his private members' motion M-172 passed in the House of Commons as referenced in this 2009 News Release by the Autism Society Canada.   Andy discussed the substance of that motion with me during a speaking event at Leo Hayes High School at which he addressed local parent autism advocates.  Andy knew that M-172 was not the end of the process of establishing a real National Autism Strategy only the beginning.  

Mr. Scott's private members motion M-172 was co-sponsored by NDP MP from Nova Scotia Peter Stoffer.  I had the opportunity to speak previously with Mr. Stoffer when I received a call from him to talk about autism issues.  I was surprised since I had not tried to reach him and I enjoy no particular fame or status but it became clear to me that Mr Stoffer was an MP who was working hard on autism issues and was seeking out all possible sources of information.  I was impressed.  

Andy Scott and Peter Stoffer were not alone in their autism advocacy in your respective parties. Among other determined leaders Ontario NDP MP Glenn Thibeault,  former PEI Liberal MP Shawn Murphy and NB Liberal Senator Jim Munson have all been dedicated advocates on behalf of autistic Canadians.

In New Brunswick we were fortunate to have two Premiers, Conservative Bernard Lord and Liberal Shawn Graham, who took huge steps, in conjunction with parent autism advocates,  in provision of early intervention services and autism trained education assistants and resource teachers. It is my understanding that most provinces, with the possible exception of Saskatchewan, have made some progress in early intervention but a patchwork quilt of early services remain. 

No province, and certainly  not New Brunswick, has taken any serious steps in provision of youth and adult autism residential care and treatment.

The current majority government of Prime Minister Stephen Harper has taken no meaningful steps toward development of a real National Autism Strategy.

Honourable sirs, will your party if it forms the next government of Canada take steps to implement a meaningful national autism strategy, advancing the considerable work of Andy Scott, Peter Stoffer, Glenn Thibeault, Shawn Murphy and Jim Munson? 

Can autistic Canadians look forward to real progress, a real National Autism Strategy, under the governments of Prime Minister Thomas Mulcair or Prime Minister Justin Trudeau?

Respectfully,

Harold L Doherty
Fredericton NB

Federal Autism Legislation, BillC-360, a “Step in the Right Direction”

Autism Society Canada hopes the introduction of Federal Autism legislation will pave the way for a National Autism Strategy in Canada

Ottawa - April 15th, 2009 – for immediate release - Autism Society Canada (ASC) applauds the introduction into the House of Commons of Bill C-360, An Act to amend the Canada Health Act (Autism Spectrum Disorder). In introducing the Bill, Sudbury M.P. Glenn Thibeault said: “Yesterday was World Autism Awareness Day. I still wear my awareness pin proudly. We as parliamentarians need to work together to provide individuals with ASD and their families with the right supports.”

Support for improving and augmenting services for persons with Autism is widespread. In separate letters acknowledging World Autism Awareness Day on April 2nd 2009, the Leaders of Canada’s federal Parties recognized the growing need to assist those affected by Autism Spectrum Disorder (ASD).

The summary of the Act states that: “The purpose of this enactment is to ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province.”

ASC encourages all within the Autism community to ask their Member of Parliament to support Bill C-360 which gives universal access to this scientifically validated and effective treatment. ASC also urges that work continue in order to provide other needed treatments and services in the best interests of all individuals with autism.

Christine Dade, President of Autism Society Canada, remarked: “Providing Applied Behavioural Analysis and Intensive Behavioural Intervention in a timely and effective way for all those who need it is definitely a step in the right direction. It isn’t everything that is needed, however, and ASC strongly urges Canadians and their leaders to work towards a National Autism Strategy as well.”

A National Autism Strategy, as called for in former Fredericton M.P. Andy Scott’s Private Members Motion M-172 (passed in the House of Commons over two years ago), includes:

a.) the development, in cooperation with provincial-territorial governments, of evidence based standards for the diagnosis and treatment of autism spectrum disorder;

b.) the development, in cooperation with provincial governments, of innovative funding methods for the care of those with autism spectrum disorder;

c.) consulting with provincial-territorial governments and other stakeholders on the requirements ofimplementing a national surveillance program for autism spectrum disorder;

d.) the provision of additional federal funding for health research into autism spectrum disorder.

Autism Society Canada looks forward to working with all stakeholders and the Government of Canada to develop a National Autism Strategy. Much more needs to be done to address the glaring gaps in services and supports across the lifespan of the individual with autism. The inherent Rights of all Canadians living with an ASD should be enhanced, protected and enforced by appropriate legislation in each province and territory. 

Canadian Autism Dad Says Thank You Florida Rep. Bill Posey

In Canada we could use more federal politicians speaking honestly and accurately,

 as  Florida Rep Bill Posey has done in the US,  about Canada's autism crisis  including 

the realities  facing those with severe autism disorders and their families. 

Here in Canada we have seen very little national leadership in addressing Canada's autism crisis.  Particularly during the Stephen Harper - Mike Lake era the federal government has expressly refused to engage  in any meaningful way in addressing Canada's autism issues.  In Canada we have relied heavily on American leadership with respect to autism research.  Against that background this father of an 18 year old son with severe autism disorder, intellectual disability who like so many with those frequently co-occurring conditions also suffers from serious epileptic seizures,  says thank you to  Rep. Bill Posey (R-Fla.) for his demonstrated knowledge of autism disorder challenges.  I am not trying to offer my opinion of the US Combating Autism Act or any other American political issue.  As a Canadian it is not my place to do that.  I do appreciate though his informed, honest description of autism realities and his willingness to openly speak for those with severe autism who can not speak for themselves. 

Unlike so many politicians in Canada, and the US, by my reading, Rep. Posey  is well aware of the realities facing many persons with autism disorders and their families.  As the father of a son who suffers from the severe end of the autism disorder I particularly appreciate his willingness to speak openly about those on the severe end of the autism spectrum and the challenges they face, challenges not even mentioned by most Canadian federal politicians. 

Some excerpts from Rep. Posey's statement found at THE HILL'S CONGRESS BLOG:

Fix the Combating Autism Act

Autism Spectrum Disorder has increased dramatically in the last 25 years.  It is a crisis.  

..
.

At a recently called House Oversight Subcommittee meeting, Dr. Insel admitted that after eight years and spending $1.7 billion, the programs developed in the CAA have failed to determine the causes of the enormous increase of the prevalence of autism, failed to prevent a single case of autism, failed to produce any new biomedical treatment for autism, failed to materially reduce the age of diagnosis of autism, failed to ensure appropriate medical care for the co-occurring health problems faced by many with autism, failed to ensure even basic safety protocols for people with autism who "wander", unfortunately some to their deaths, and overall, failed the families facing autism—most especially the approximately one-third of families with children most severely affected by autism, who literally cannot speak for themselves, and whose severe disabilities portend one of the largest unfunded federal fiscal liabilities of the 21st century.

...

Instead, the IACC plan sits on a shelf while the NIH actually funds autism research through an entirely different set of processes and priorities, completely divorced from the strategic plan.  This disjointed process results in producing at best few effective results.   Furthermore, the agency has failed to evaluate and validate any of the commonly used treatments currently being used so that parents may eventually obtain insurance reimbursement. 

Not only does autism research funding fail to match the IACC recommendations, but the Government Accountability Office (GAO) recently found that up to 84% of such research had the potential to be duplicative.  For example genetics research funding far exceeded the IACC recommendations while environmental exposure research fell far short of those recommended.  Government witnesses affirmed during the hearing that recent research demonstrated that upwards of 55 percent of autism is linked to environmental factors, but the government research funding balance does not reflect this reality. 

...

We owe it to those most severely affected by autism, and all those who love them, to give this our best shot.  I fear that in the rush to pass “a bill” we are missing an opportunity to pass “the right bill” that produces results.  I hope my colleagues on both sides of the aisle will work with me to make the time to do so. 

Canada Should Fulfill Its International Commitment to the WHO and Develop a Real National Autism Strategy

Canada is on record as being a member state of the World Health Organization an organization which has just recently passed a resolution on Autism Spectrum Disorders by its member states  which, among other things, requests the Director General to work with member states to  strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems.   All member states including Canada (and the United States) supported the resolution.  In doing so Canada has made an international commitment, to the World Health Organization,  to develop a real national capacity to address autism and other developmental disorders.   

Under the Canadian Constitution international relations are within the constitutional jurisdiction of the Government of Canada which, under the Stephen Harper - Mike Lake government has expressly refused to develop, let alone strengthen Canada's national capacity to address autism on the grounds that health care is within provincial not federal jurisdiction.  This argument is of course bogus, nothing stopped the federal government from cooperating with the provinces to develop a National Health Care (medicare) system in the first place. Regardless of history it is Ottawa that must implement international commitments and the Canadian government, despite the efforts of a strong parent led autism advocacy movement in British Columbia, Ontario, New Brunswick and PEI and political leadership of the late Andy Scott,  Peter Stoffer, Shawn Murphy, Glenn Thibeault and Senarot Jim Munson, has yet to begin to develop our national capacity to address autism and other developmental disorders.  

Canada is listed on the UN web site as member state of the WHO:

"Countries

All countries which are Members of the United Nations may become members of WHO by accepting its Constitution. Other countries may be admitted as members when their application has been approved by a simple majority vote of the World Health Assembly. Territories which are not responsible for the conduct of their international relations may be admitted as Associate Members upon application made on their behalf by the Member or other authority responsible for their international relations. Members of WHO are grouped according to regional distribution (194 Member States).

C

• Cabo Verde
• Cambodia
• Cameroon
• Canada"

 As reported on the  Autism Speaks website on May 23, 2014:

"Today the World Health Assembly adopted a formal resolution making autism a global health priority. The assembly is the governing body of the World Health Organization (WHO). As such, the resolution brings a formal commitment by member states of the United Nations."

The resolution adopted by ALL WHO member states including Canada is titled Comprehensive and coordinated efforts for the management of autism spectrum disorders. In paragraph 2 of the resolution Canada, and other WHO member states through the World Health Assembly:

2.   REQUESTS the Director General:

(1) to collaborate with Member States and partner agencies in order to provide support and to strengthen national capacities to address autism spectrum disorders and other developmental disorders, as part of a well-balanced approach, which strengthens systems, to addressing mental health and disability, and in line with existing, related action plans and initiatives;

The member states, including Canada, are also specifically requested:

(4) to increase the capacity of health and social care systems, as appropriate, to provide services for individuals and families with autism spectrum disorders and other developmental disorders;

(7) to strengthen different levels of infrastructure for comprehensive management of autism spectrum disorders and other developmental disorders, as appropriate, including care, education, support, intervention, services and rehabilitation;

The current federal government of Stephen Harper and Mike Lake has doggedly refused to develop a National Autism Strategy or commitment of any kind to increase and strengthen systems and infrastructure necessary to provide services and support for individual and families with autism spectrum disorders and other developmental disorders.  The federal vs provincial jurisdiction argument did not prevent Canada from developing a national medicare system through cooperative means.  

The international commitments made by Canada through its membership in the World Health Organizations now provides a further rationale for developing a Real National Autism Strategy one that increases the capacity and strengthens the infrastructure necessary for Canada to provide the necessary health, social care other support required by autistic Canadians and their families to live full, decent lives.

 

Canada's Autism Disgrace 2007: 2014 Update

Photo from Ameriquebec.net 

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

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

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

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

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

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

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

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

USA's 1 in 68 Autism Rates and Canada's Fake National Autism Strategy

"At present there is no government monitoring system in place to provide us with accurate statistics on the prevalence of ASDs in Canada" 

Autism Society Canada 

The recent USA CDC reports that US autism rates are now estimated at 1 in 68 highlights, yet again, the lack of a Real National Autism Strategy in Canada. One of the few specific commitments made by the federal government over the years was a commitment to conducting a national surveillance program of Canadians with autism disorders.  As the above quote from the Autism Society Canada web site makes clear that has not happened.  Canadians must simply assume that US autism rates, now 1 in 68, also apply here in Canada. 

Canadian parents fought initially , and ultimately unsuccessfully, through the courts in BC (Auton) and Ontario (Wynberg/Deskin) for autism treatment coverage under medicare and autism services before commencing their more overtly political efforts, including the Medicare for Autism NOW! campaign.  Here in the Maritime provinces we took a political approach to developing a national autism strategy with the NB efforts in  which I was personally involved beginning  in 2001, primarily by many discussions with our Fredericton MP, the late Andy Scott.  In 2003  Andy Scott, made a public commitment in 2003 to work toward a National Autism Strategy at a tribute to his 10 years of service as an MP at the Boyce Famers' Market, an event I attended and reported on to the members of the Family Autism Centre for Education (FACE):

"October 19 2003

Hello everyone:

Some good news for those interested in autism issues emerged last night  at the Boyce Farmers' Market in Fredericton New Brunswick as Frederictonian's gathered to pay tribute to MP Andy Scott's  10 years of service as an MP on behalf of Frederictonians and as an advocate for human rights, services for the disabled, and cultural harmony. Andy announced that he would be meeting with Paul Martin in the hopes of pursuing a national Autism strategy. Although health care is primarily within provincial juridiction some health issues, such as breast cancer, HIV, etc. have been approached on a national level because of the magnitude of the issues involved.  While we have all heard political promises in the past,  Andy Scott has a proven track record of commitment to, and follow through on, disabilities and human rights issues.  Great news.

Harold Doherty

Family Autism Centre for Education (FACE)"

Andy's comments at the Boyce Farmers' Market were also featured in a 2003 Telegraph Journal article by Tali Folkins:

"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." 

Andy did answer the call on behalf of autistic Canadians and  actively pushed for a National Autism Strategy which he ultimately realized with the passage of Motion M-172.  However, the motion was essentially a commitment in principle with few obligations being undertaken by our federal government but it did help put autism on our national agenda and it was Andy Scott being Andy ... getting done what could get done ... with a view to moving forward further in future.  One of the specific items that the federal government did commit to in the motion was a national surveillance program, a program that would tell us how many Canadians now suffer from autism disorders.  It is a commitment that has still not been honored 8 years later. 

Andy Scott himself did continue the fight   as demonstrated in his June 5, 2007 statement in the House of Commons:

"Autism 

[Table of Contents]

Hon. Andy Scott (Fredericton, Lib.):

Mr. Speaker, it is regrettable that we have seen little action by the government toward implementing a national autism strategy.

It has been more than a year since I introduced Motion No. 172. My private member's motion called for evidence based standards, innovative funding arrangements for diagnosis, treatment and research, and a national surveillance program.

The motion was adopted in good faith and supported by the government. However, it was very disappointing to see no reference to a national autism strategy in the recent budget or any discussion this spring.

Recently, I joined my colleagues from Charlottetown and Sackville—Eastern Shore and Senator Munson at a rally in Halifax that reinforced that there are families with autistic children across Canada who need the government's help.

The Conservatives should move off their default position of jurisdictional excuses, show creativity and compassion and start helping these Canadians."

Andy Scott's reference to his colleagues from Charlottetown and Sackville-Eastern Shore were  references to PEI's Shawn Murphy and Nova Scotia's Peter Stoffer both of whom, along with Andy Scott and Senator Jim Munson, also worked tirelessly toward achieving a National Autism Strategy.  The rally of which he spoke was a Halifax rally organized by Jean Lewis and FEAT-BC who had been raising autism awareness, lobbying politically and fighting for national autism coverage in the Courts for several years and continued to do so with its "Medicare for Autism NOW!" efforts.  I attended the FEAT autism really in Halifax and had the privilege of meeting Jean Lewis, several of the BC advocates and tireless Nova Scotia autism advocate Jim Young.  Under the BC leadership there have been subsequent national meetings in Oakville and Toronto.

NB MP Andy Scott, FEAT-BC, Medicare for Autism NOW!'s Jean Lewis

National Autism Rally, Halifax, May 26 2007

NS MP Shawn Murphy, Senator Jim Munson, NB MP Andy Scott 

National Autism Rally, Halifax, May 26 2007

Nova Scotia MP Peter Stoffer,  National Autism Rally, 

Halifax, May 26 2007

In 2006 Shawn Murphy went on to introduce his own private member's bill, Bill C-304,  in the House of Commons which, if passed, would have put Canada well on the way to establishing a REAL National Autism Strategy:

C-304

First Session, Thirty-ninth Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

_____________________________________________

FIRST READING, MAY 17, 2006

_____________________________________________

MR. MURPHY (Charlottetown)

1st Session, 39th Parliament,
55 Elizabeth II, 2006

HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a
national strategy for the treatment of
autism and to amend the Canada Health
Act

Her Majesty, by and with the advice and
consent of the Senate and House of Commons
of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National
Strategy for the Treatment of Autism Act.


NATIONAL CONFERENCE

2. The Minister of Health shall, before
December 31, 2006, convene a conference of
all provincial and territorial ministers responsible
for health for the purpose of working
together to develop a national strategy for the
treatment of autism. The Minister shall, before
December 31, 2007, table a report in both
Houses of Parliament specifying a plan of action
developed in collaboration with the provincial
and territorial ministers for the purpose of
implementing that strategy.

AMENDMENTS TO THE CANADA
HEALTH ACT

3. Section 2 of the Canada Health Act is
renumbered as subsection 2(1) and is
amended by adding the following:

(2) For the purposes of this Act, services
that are medically necessary or required under
this Act include Applied Behavioural Analysis
(ABA) and Intensive Behavioural Intervention
(IBI) for persons suffering from Autism Spectrum
Disorder.

Bill C-304 was defeated soundly by a coalition of Harper Conservatives and separatist Blog Quebecois votes in the House of Commons. During debates in the House of Commons Harper conservative MP Mike Lake from Alberta, the autism face of the Harper government, a father of an autistic son, fought against the Murphy bill and helped vote it down to defeat.  

The hard truth is that there will never be a real National Autism Strategy as long as the Harper government rules in Ottawa.  Nor will a REAL NAS emerge from national autism charities that were never part of the struggle for a national autism strategy to begin with and who do not acknowledge the efforts made by parents across Canada who fought hard and long for a National Autism Strategy. National charities dare not speak contrary to federal government policy for fear of risking their charitable status. 

A real National Autism Strategy, even a real, current estimate of the number of Canadians who suffer from autism disorders will not come into existence until the Harper government is retired from office and will only come into existence with parent driven initiatives for whom helping their autistic sons and daughters is their most important objective.   Until then we will have to accept US figures for autism prevalence.  Accordingly, let it be known:

1 in 68 Canadians has an autism spectrum disorder. 

Senator Jim Munson Says Ottawa Has Done Little to Address Canada's Autism Crisis

Laverne Stewart of Fredericton's Daily Gleaner reports (September 24, 2013) that National autism advocate Senator  Jim Munson, shown left in his Parliament of Canada photo,  is frustrated, that after years of working to secure a national autism disorder spectrum strategy, Munson said the federal government has done little to address Canada's national autism crisis:

"In a phone interview with The Daily Gleaner, he said the federal government has started to look at what approach each province is taking to address autism.

“They’re different all across the county,” he said.

Munson said people across Canada need to keep pushing the federal and provincial governments for a better approach to addressing the needs of autistic individuals and their families.

“Autism has no borders. It doesn’t. Not in this country or any other country in the world. We live in this world where we say it is a provincial responsibility. It is not. It’s Canada’s responsibility … It is scandalous. We’re in crisis.”"

Senator Munson, is widely respect for his work on behalf of autism disorders  and he has done much over the past 10 years to keep autism on the national agenda, a major challenge since most of that time has seen the Harper government act in opposition to any effective National Autism Strategy.  Even with an Edmonton MP, Mike Lake,  who is clearly a  dedicated father to his own son with an autism disorder the government of  Harper and Lake have taken absolutely NO action to help autistic Canadians in need of effective early intervention, effective learning intervention for school or modern residential care , with autism trained staff, for the many adult Canadians with severe autism disorders who will require such care.

Senator Munson is very diplomatic.   With respect,  I do not agree that Ottawa has done little to address Canada's autism crisis.  The Harper government has in fact worsened that crisis with it's official opposition to a National Autism Strategy, an opposition so ferocious that even Edmonton MP and dedicated Autism Dad Mike Lake voted against Shawn Murphy's private member's motion that would have ensured access to effective, evidence based intervention for autistic children under our national health care plan.   The Harper government's opposition to an effective national autism strategy is so intense that it even cancelled a scheduled national autism strategy conference scheduled for Ottawa several years ago at which community autism representatives were expected to attend.  The event was rescheduled and the "community" autism representatives were hand picked to exclude any prominent autism advocates for a National Autism Strategy.  

Senator Munson has had the interests of autistic children and adults at heart for many years. Unfortunately for autistic children and adults, like my son, the Senator's  frustration is doomed to continue as long as Stephen Harper rules in Ottawa. 

October is Autism Awareness Month in Canada, Canadian Government Still Doing Nothing Eh Mike Lake?

October is Autism Awareness Month in Canada.  You would never know it based on the contribution made by Canada's federal government which has taken a strict, division of constitutional jurisdiction, approach to autism disorders in Canada.  In other words it has said that addressing Canada's growing National Autism Crisis is not a concern of the federal government. 


Harper Conservative MP Mike Lake, who I have met in person and spoken with by phone, and who seems like a genuinely nice guy, speaks lovingly of his autistic son in Parliament with a few words recognizing  World Autism Awareness Day on April 2nd and that's pretty well it.  On Wednesday, February 21, 2007 Mr. Lake himself voted against Bill C-304, the private member's motion brought by Charlottetown Liberal MP Shawn Murphy,  an Act that would have amended the Canada Health Act and provided for the development of a national strategy for the treatment of autism.  

If non Canadians want an idea of how little is done by our federal government to help Canadians and their families suffering from autism disorders they need only refer to the October 2011 statement of former federal Minister of Health Leona Aglukkaq:

Autism Awareness Month

October, 2011

Autistic disorders are heart-breaking conditions because they can cause developmental disabilities in very young children that may affect them for the rest of their lives. These disorders are typically diagnosed in children before they reach their fifth birthday. 

Autistic disorders have a broad range of symptoms. They can be mild to severe and tend to result in problems with social interaction, communication and behaviour. In Canada, it is estimated that Autism Spectrum Disorders (ASD) affect as many as 1 in every 150 children, as well as the lives of their families, friends and caregivers.

Important advances have been made in the way we care for and educate Canadians living with ASDs. Yet more research is needed to learn what causes these disorders and to help develop better treatments and interventions so that those afflicted with ASDs can live more normal lives.

As Minister of Health, I am pleased that the Government of Canada, in cooperation with our colleagues in the provinces and territories, is setting up a national surveillance system to establish reliable data to:  

• determine how common ASDs are and how rates differ across Canada;
• describe the population of Canadians living with ASDs; and
• understand changes in the number of children being diagnosed over time.

This information will help in developing programs to serve the needs of Canadians living with ASDs and their families and caregivers. In addition, the Government has invested approximately $40 million on autism-related research since 2000.

In closing, I want to congratulate the Canadian Autism Spectrum Disorders Alliance and Autism Speaks Canada for their dedicated work in this area.

Leona Aglukkaq

Minister of Health

Government of Canada

Prevalence data, clearly based on existing US information of that time,  is about the extent of the federal government's contribution to autism awareness in Canada. Interestingly neither former Minister Aglukkaq, nor autism dad Mike Lake, mention the parents who advocated with determination in provinces across Canada for early evidence based intervention for autistic children.  Nor do they mention federal political figures who have in the past made great efforts to bring a real National Autism Strategy to Canada including Fredericton New Brunswick's recently deceased Andy Scott, Peter Stoffer of Nova Scotia, Shawn Murphy of PEI, and Senator Jim Munson.

Canada has a national health care plan which does provide basic health care for Canadians.  It is not perfect. Anyone can legitimately cite personal grievances with the system but it is a system that does not exist in the neighboring US.  For that national health care plan developed a half century ago this Canadian father is very thankful.  It would not exist if the  Harper government's constitutional excuses had prevailed during that era. It does  not exist today for the purpose of addressing the  autism specific needs of Canadians suffering from autism spectrum disorders.

During Autism Awareness Month the Harper government, and presumably Mike Lake, will make a statement or two about autism and earn some political brownie points.  If past practice holds firm they will announce no significant federal government efforts to help address Canada's National Autism Crisis.