Please Think Twice Before Donating to the Liberal Party of Canada

The Liberal Party of Canada is the Party that ... it seemed ... had made a giant step forward to improve the life outcomes of Canadians with autism disorders by passing a resolution calling for medicare coverage for autism.  Yet I was refused the opportunity by PM Trudeau himself to ask him whether he intended to honor that resolution and if so when. Subsequently the executive of Medicare for Autism NOW! was given the brush off when it attempted to get a straight answer from the smiling face PM about medicare coverage for autism and whether he would honour his party's commitment to providing medicare coverage for autism. 

Now the Liberal Party of Canada which passed the Winnipeg 2016 resolution calling for medicare coverage for autism is asking for your money.  This is the Party whose leader  ignored and brushed off his own national party's resolution calling for Medicare for Autism.  Please do not donate to this  party whose leader  ignores his own party's resolution, who ignores the Liberal Party's call to provide medicare coverage for autism.

If you want to see medicare coverage of autism  for yourself or for a loved one please think twice before donating to the federal Liberal Party.

Autism Reality Month: Persons with Autism Disorders Die 16 to 30 Years Sooner

People with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner.  Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism is severe and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

People with autism die 16 years earlier on average,says charity, Hawkes, Nigel. BMJ : British Medical Journal (Online); London352 (Mar 17, 2016)

April is considered Autism Awareness Month in much of the world with April 2 being recognized as Autism Awareness Day.  Typically Blue Lights shine from various government and public buildings around the world.  The general characteristics of Autism Spectrum Disorder may get mentioned and the successes of various individuals with an autism disorder or "condition" as some prefer to call it, are highlighted.  Very, very little is done to raise awareness of the challenges and harsh realities faced by many with autism disorders.  One of the harshest autism disorder reality is the dramatically shorter life expectancy of persons with autism spectrum disorders. In the past year a study by the autism charitable group Autistica in the UK did highlight  that harsh reality ... the dramatically shorter life expectancy of persons with autism disorders. ... shorter by decades for many with autism disorders.  

I don't expect anyone to rely on my interpretation or analysis of the Autistica study, based on Swedish data.   Instead I refer to the following excerpt from a summary of the study published in the British Medical Journal; People with autism die 16 years earlier on average,says charity. 

People with autism tend to die decades younger than the rest of the population, and more needs doing to understand the problem’s causes and to find potential solutions, says a new report from the charity Autistica. Autistica’s report,1 drawing on recently published research in Sweden, said that people with autism die 16 years sooner on average than they otherwise would, and those whose autism is combined with intellectual disability die 30 years sooner. 

Death comes earlier to autistic people, whatever the proximate cause. But epilepsy, which is diagnosed in 20-40% of autistic people, is a major cause of death, especially in those whose autism issevere and combined with learning difficulties. Among those who are autistic but with less severe symptoms, suicide is a common cause of death, especially among women. 

The Swedish study,2 produced by a team from the Karolinska Institutet in Stockholm, found that, among high functioning people with autism spectrum disorder, suicide was nearly 10 times more common a cause of death than in matching controls. A breakdown by sex, which included high and low functioning people, showed that autistic women were 13 times more likely to take their lives as other women, and men were six times more likely. 

At a briefing at the Science Media Centre in London, Patrick Bolton, professor in child and adolescent neuropsychiatry at King’s College, London, said that no similar data existed in the United Kingdom but that, if such data did exist, they would broadly match the Swedish data, which were drawn from a national patient register matched against death records. 

Jon Spiers, chief executive of Autistica, said that no single issue could explain the raised death rates. “The evidence base is so small, and we don’t understand the biological mechanisms properly,” he said. “We also know little about how autistic adults interact with the healthcare system.” 

The Swedish study looked at causes of death and found raised rates in many categories, including cancer, congenital malformations, and the circulatory, respiratory, and digestive systems. But suicide was the only cause that was higher in high functioning than in low functioning autistic people. Spiers said, “The inequality in outcomes for autistic people is shameful. We cannot accept a situation where many autistic people will never see their 40th birthday. Everyone involved in supporting people on the autistic spectrum from the government right down to local care providers has a responsibility to step up and start saving lives as soon as possible.” 

Winnipeg 2016 Liberal Medicare Coverage for Autism Resolution Given The Brush Off By PM Justin Trudeau

                                    

Photo of PM Justin Trudeau Above by Harold L Doherty, January 17, 2017 in Fredericton where he brushed off my attempt to ask him a question. I had intended to ask him about the Winnipeg National Liberal Party Resolution calling for Medicare Coverage for Autism. Medicare for Autism NOW! Excutive Directors Jean Lewis and David Marley sent a detailed Open Letter to the PM on April 2, 2017 and got a prompt reply from some unknown individual although it was not from the PM or anyone in his office.  .It appears the PM has no intent to act on the Medicare Coverage for Autism Resolution passed by the National Liberal Party in Winnipeg in 2016.

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On April 2, 2017 Autism "Awareness" Day Jean Lewis and David Marley, Executive Directors of Medicare for Autism NOW! forwarded an Open Letter to Prime Minister Justin Trudeau hoping to bring his attention to the need for serious action to address the needs of autistic Canadians, needs which were recognized 10 years ago in the "Pay Now or Pay Later" report of the Canadian Senate, 

The letter also referenced an earlier email of November 20, 2016 which had raised the medicare for autism issue. The reply however was not from the PM whose office apparently thought it appropriate to give the letter the brush off and dump it downstream to an unidentified, invisible individual in the Strategic Policy Branch of Health Canada.

Apparently the mystery author of the reply to the Medicare for Autism NOW! executives wasn't aware that Medicare for Autism NOW! and other organizations and individuals have been advocating for  more than 15 years in an effort to have our federal governments show some compassion and leadership in addressing the needs of individuals of all ages with autism disorders. Advocates including this father of a 21 year old autistic son with severe autism challenges are well aware of the inaction of our federal governments in addressing autism disorders in Medicare or in any other meaningful fashion. 

The invisible, unidentified author of the Reply of the PM to the Medicare for Autism coverage  delivered a trivial lecture that ignored facts like .... oh ... democracy .. and the fact that we can change legislation as needed when necessary.  The invisible unknown author of the reply on behalf of PM Justin Trudeau showed no awareness of the WPG Resolution passed by the National Liberal Party in 2016 which called for national leadership on autism initiatives including medicare coverage to address autism disorder challenges in Canada.

It appears, as shown by the reply from  a person in the policy branch of Health Canada, that the WPG 2016 National Liberal Party medicare coverage for autism resolution carries no weight with PM Justin Trudeau.

From: SPB / DGPS (HC/SC) [mailto:hc.spb-dgps.sc@canada.ca]
Sent: April 6, 2017 1:39 PM
To: 'domarley52@gmail.com'
Subject: Treatment of autism spectrum disorder

Dear Mr. Marley:

 Thank-you for your e-mail of November 20, 2016, concerning coverage for the treatment of autism spectrum disorder. Apologies for the delay in responding.

 The Canada Health Act requires that medically necessary hospital and physician services be covered by publicly funded provincial and territorial health insurance plans. The Act does not specify diseases or conditions. Any service provided by a physician or in a hospital that is considered to be medically necessary in the treatment of a disease or condition should be covered by the provincial and territorial health insurance plans.

Other health care services provided outside hospitals and by non-physicians, such as those provided by behavioural therapists, are outside the scope of theCanada Health Act. For these services, it is up to the provincial and territorial governments to determine whether to cover them, and if so, how, either under their health care plans or under separately funded programs. The federal government continues to support this approach, which is respectful of provincial and territorial jurisdiction in health.

 The Government of Canada recognizes that autism spectrum disorder (ASD) can have a significant and lifelong impact on individuals and families.

Federal investments are supporting Canada's exemplary researchers in their quest to advance scientific knowledge and to use this information to develop innovations in ASD diagnosis, treatment and support. Canada is also well-known for the progress researchers are making in understanding the genetics of ASD. ‎Through the Canadian Institutes of Health Research (CIHR), the federal government is providing significant research funding. You can find more information on federal investments in ASD research at: www.cihr-irsc.gc.ca/e/46576.html.

 The Public Health Agency of Canada is also helping to ensure that Canada has accurate data to help understand trends in autism. This will help to focus efforts correctly and to monitor changes over time. This work is a collaboration with the provinces and territories, and the first report on results is planned for next year.

Federal programs are also supporting initiatives that help those with disabilities, including ASD, reach their full potential. For example, with funding from the Opportunities Fund for Persons with Disabilities, administered by Employment and Social Development Canada, organizations are helping persons with disabilities prepare for, obtain and maintain employment. 

Again, thank you for writing.

Sincerely,

Strategic Policy Branch

Health Canada

Medicare for Autism NOW! Open Letter to Prime Minister Trudeau

FOR IMMEDIATE RELEASE. PLEASE SHARE AND DISTRIBUTE WIDELY

Medicare for autism Now! Society
Suite 425, 1489 Marine Drive
West Vancouver, BC                                            
V7T 1B8
 
April 2, 2017                                                                                                          
“OPEN LETTER”

Rt. Hon. Justin Trudeau, PC, MP                                                              
House of Commons                                                                                      
Ottawa, Ontario
K1A 0A9

Dear Prime Minister:

Today is “Autism Awareness Day”, when some suggest we should celebrate this neurological disorder as just another way of being. This is bizarre and offensive in equal measure.

Last May, delegates to the Liberal Party of Canada’s national convention, held in Winnipeg, recognized the right way to respond to this national epidemic of staggering proportions when they overwhelmingly passed a priority health-care policy resolution calling upon the Government of Canada to work with provinces and territories to include under our supposedly universal MEDICARE plan science-based treatment for autism spectrum disorder (“ASD”), specifically Applied Behavioural Analysis. A copy of the resolution is enclosed. This initiative was assisted and encouraged by our not-for-profit organization, the Medicare for autism Now! Society (“MFAN”).

To date, almost one year later, you and your Cabinet colleagues have failed to do what your extra-parliamentary party has instructed and literally hundreds of thousands of Canadians desperately need. This inaction is in spite of the Government of Canada having concluded “Health Accords” with every province except Manitoba, most of which purport to involve an emphasis on increased federal funding for mental health issues. Why do you and your colleagues continue to ignore the plight of persons afflicted with ASD and their families, and continue to deny appropriate funding for what our courts have long ago ruled to be the medically necessary treatment of this often devastating neurological disorder?

According to the report “PAY NOW OR PAY LATER, Autism Families in Crisis” released by a Senate committee in March, 2007, the number of ASD diagnoses was then one in 166, which indicated that, fully ten years ago, there were some 48,000 children, aged 19 and under, and 144,000 adults living in Canada with this condition.

Today, in North America the incidence rate of ASD is estimated by the world-renown Centers for Disease Control, in Atlanta, to be one in 68. We are reliably advised that this ratio translates into roughly 129,000 children and 386,000 adults living in Canada with ASD. Clearly, it is long past time for action, as has been undertaken in the United States where, at last count, fully 44 states require health insurance providers to include in their policies coverage for science-based treatment for ASD, specifically Applied Behaviour Analysis.  No further consideration should be given to expensive proposals calling for yet another self-serving bureaucracy and perennial gab-fests, such as the one recently put forward by the Canadian Autism Partnership Project. As a former premier of Ontario, and interim leader of the Liberal Party of Canada, Hon. Bob Rae, said, in his letter of April 21, 2016 endorsing the enclosed resolution, “It is long past time to end this unacceptable discrimination by including treatment for this neurological disorder where it rightfully belongs in our country’s health-care system.”

In February, 2016, in talking about old age pension entitlements, you said, “How we treat vulnerable people in our society is very important.” We agree. There can be few more vulnerable people in Canada today than those who suffer from untreated, moderate to severe ASD. In the mandate letter you sent to Health Minister Jane Philpott, upon her admission to Cabinet, you stated, inter alia, “It is my expectation that you will engage constructively and thoughtfully and add priorities to your agenda when appropriate…We will be a government that governs for all Canadians…As Minister of Health, your overarching goal will be to strengthen our publicly-funded universal health care system and ensure it adapts to new challenges.”

We sent an e-mail to the Health Minister, on November 20^th of last year, asking her what steps were being taken to implement this long overdue and urgently needed policy change. To date, we have yet to receive an acknowledgement of our communication. We have had a similar lack of response from Finance Minister Morneau to a letter, dated June 22, 2016, we sent him respecting this issue. A copy of each communication is enclosed. So much for a government committed to openness and engagement.

What is it going to take to get you and your colleagues in the Government of Canada to recognize the seriousness of this health-care crisis (identified as such by the Senate ten years ago) and to respond by doing the morally right and fiscally responsible thing through ensuring appropriate funding within MEDICARE for the science-based treatment of ASD, specifically Applied Behaviour Analysis?

Yours sincerely,
Jean Lewis           David Marley,
Director, MFAN    Director, MFAN