Thursday, January 15, 2015

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)

No comments: