Showing posts with label Mike Lake. Show all posts

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!

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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.  

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A Real Canadian Autism Hero - Stefan Marinoiu



Stefan Marinoiu is not a federal or provincial political figure, or an entertainment celebrity of any kind talking endlessly about raising autism awareness without taking any action to help the 1 in 88 Canadians who suffer from autism disorders.  Stefan is a real Canadian autism hero.  He has made courageous efforts to have our federal government address Canada's autism crisis. 

Stefan has raised autism awareness without the benefit of political or media connections. He has not done so in order to obtain free travel to Banff or the UN or to augment a political career, he has done it to help his son, Simon,  and  others with autism disorders.  He has done it by twice putting his life at risk with a mid winter walk :autism" trek from Toronto to Ottawa and with a  hunger strike.  I was very pleased to meet Stefan and his wonderful family in Toronto.  Stefan did not confine his efforts to simply raising the awareness as happens with so many much less challenging efforts. Stefan actually advocated for  our federal government to get involved in a meaningful serious way to address Canada's autism crisis.   

Unfortunately the Stephen Harper-Mike Lake government does not want to acknowledge or deal with Canada's autism crisis and there will be no federal progress in Canada as long as the Harper version of the Conservative government holds majority control. Not a single member of our Harper Conservative government, not even those with family members affected by autism, have bothered to push for meaningful federal efforts to address Canada's autism crisis. I doubt though that Stefan will give up.  I will try to follow Stefan's example and continue efforts to advocate for meaningful efforts by our federal government to address Canada's autism crisis.  

Those of us who believe that our federal government should offer meaningful assistance to the 1 in 88 Canadians with an autism disorder have to look past the Harper era and look to NDP and/or Liberal governments to address Canada's national autism crisis.  We can't  give up in the face of Harper's indifference, we must keep fighting and refuse to give up.

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Glenn Thibeault's REAL National Autism Strategy



In the past 36 hours I have criticized CASDA's claims to be advocating for a National Autism Strategy and to be presenting a unified national autism voice.  Lawrie Mawlam of CASDA, a conscientious and courteous individual with whom I have had the privilege of talking in recent months,  has taken some objection to my criticism and I thank her for expressing her opinions so forthrightly.   I hope though that CASDA will consider the criticisms of their efforts before rejecting them defensively.  I also ask CASDA, and any one else purporting to advocate for a National Autism Strategy to consider and support the private members bills of Sudbury MP Glenn Thibeault. The two bills express a clear and coherent National Autism Strategy that would be great benefit to autistic Canadians and their families and that is consistent with the efforts by many Canadians seeking a REAL National Autism Strategy for many years before CASDA and its constituent elements began seeking a national approach to autism.

I recommend that CASDA, Conservative MP Mike Lake,  and all others seeking a real and meaningful national autism strategy support, and encourage their members of Parliament to support, Glenn Thibeault's private member autism bills as described on Mr. Thibeault's site:

"THIBEAULT RE-INTRODUCES AUTISM LEGISLATION


2011 06 15


OTTAWA – Today MP Glenn Thibeault (Sudbury) re-introduced two Private member`s Bills designed to assist individuals diagnosed with autism spectrum disorders.


The first Bill would amend the Canada Health Act to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognised treatments for individuals living with autism spectrum disorders.


The second would create a National Strategy for individuals living with autism spectrum disorders, therefore ensuring that these individuals would receive the highest level of care, regardless of which region of Canada they live in.


“Far too many Canadians and their families are coping with autism spectrum disorders without adequate support from any level of government” said Thibeault. “Together, these two Bills would ensure that all Canadians, irrespective of where they live, have access to the most appropriate forms of care and extended health services.”

“With negotiations between the provinces and federal governments on the Canada Health Accord starting in 2014, I am calling on the Government to implement the provisions of these bills to ensure that individuals suffering from autism spectrum disorders are properly covered by the Accord.”

Autism spectrum disorders are a spectrum of psychological conditions, including autism and Asperger’s syndrome, which are characterised by an impairment of social interaction, restrictive interests and repeated behaviours. Currently, around 1 in 200 Canadians – representing roughly 190,000 Canadians - are estimated to have autism spectrum disorders. Incidence rates have been on the rise over the past decade, with the prevalence rate in children estimated to be 1 in 165.

-30-

For further information, please contact:

Alex Bushell, Parliamentary Assistant (Glenn Thibeault): 613-996-8962 or glenn.thibeault.a2@parl.gc.ca"

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CASDA National Autism Strategy Is Not A REAL National Autism Strategy: It Does Not Help Canadian Autistic Children and Adults



In looking at the National Autism Strategy information from a CASDA (Canadian Autism Spectrum Disorders Alliance) conference held in Ottawa on June 8 2011, and which I have posted following this comment,  I see that there is the suggestion for expansion of tax relief for autism families. That is certainly a specific, concrete step that will help some families with autistic children. Beyond that though I don't, with all due respect, see anything being proposed to assist autistic children, regardless of where they live in Canada, to receive evidence based effective early intervention, yes that still means ABA, a real education and for the many who will require it, decent, autism specific residential care and treatment as adults.

Early autism intervention across Canada resulted from a wave of focused determined parents advocacy which began over a decade ago. It did not result from conferences of persons building careers in politics or charitable bureacracies or attending subsidized conferences in Banff or Ottawa. 

I recommend that this organization stop pretending and start getting serious about helping with early intervention, education, adult residential care and treatment for autistic Canadians. Sorry I if sound harsh but these types of conferences, with their timid agendas,  have accomplished nothing over the past 10 years. Pretending to help is worse than doing nothing at all. It creates the illusion that something is being done when that is not the case.

Conservative government MP Mike Lake, to his credit, did provide  links to parliamentary sites if you are interested in following autism bills introduced by Sudbury NDP MP Glenn Thibeault who has been a determined advocate for a real National Autism Strategy for several years.  My final comment is to recommend to Mr. Lake and other attendees at the CASDA conferences to fight for a real National Autism Stategy as Mr. Thibeault has done along with fellow NDP member Peter Stoffer and former Liberal MP Shawn Murphy.

"In 2007, Autism Canada spearheaded the Canadian Autism Spectrum Disorders Alliance (CASDA) and today sits on the Leadership Committee. On June 8, 2011, Laurie Mawlam, the Executive Director at Autism Canada, was in Ottawa with the others on the CASDA Leadership Committee advocating for a National Autism Strategy. Please find below the notes from that meeting, including the individuals the Leadership Committee met with and a synopsis of their conversations.
  
Connor Robinson, Canada Revenue Agency
  • Broadening the interpretation of existing categories of eligible expenses under the Medical Expenses Tax Credit to include more expenses often faced by families with a child with an Autism Spectrum Disorder
  • Adding Autism Spectrum Disorder-related expenses to the list if eligible expenses under the Medical Expenses Tax Credit
  • Clarifying the rules and procedures of the audit process                    
Lisa Belzak, Epidemiologist, Public Health Agency of Canada 
  • The development and design of a National Surveillance System for Developmental Disorders, including Autism Spectrum Disorders
  • The creation of a nomination committee to create an advisory committee for the National Surveillance System
  • The creation of an advisory committee for the National Surveillance System
Nathalie Gendron, Assistant Director, Institute of Neurosciences, Mental Health and Addiction, Canadian Institute of Health Research 
  • The current levels of funding for research in Autism Spectrum Disorders
  • New developments that are in the works that should be made public shortly
The Honourable Jim Munson, Senator, Ottawa-Rideau Canal 
  • Raising awareness of Autism Spectrum Disorders among Senators and Members of Parliament
  • The reintroduction of Senator Munson's bill honouring Autism Awareness Day 
The Honourable Mike Lake, Member of Parliament, Edmonton-Mill Woods-Beaumont 
  • Reviewed outcome from meetings of the day
  • Discussed Mike playing a role in reaching out to other MPs that have a family member with an ASD, to increase the base of support for a federal ASD agenda
  • Reminder from Mike that the following website permits us to follow the progress of bills related to ASD -www.parl.gc.ca
    • There are presently two bills dealing with Autism Spectrum Disorder, which are being introduced by the Member of Parliament for Sudbury, Glenn Thibeault (NDP).
    • Bill C-218: http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5079448
  •      Bill C-219: http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5080253

    These meetings were an opportunity for CASDA to reinforce the importance of action on the federal level in the area of Autism Spectrum Disorders and share our vision that all Canadians with an Autism Spectrum Disorder have full and equal access to the resources that they require to achieve their full potential.

    Thank-you for joining CASDA to ensure that our vision becomes a reality. Our strong, collective voice for the Autism Spectrum Disorder community at the federal level is making a difference!


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Harper Government's Autism Awareness Regression



I have attached an email and  blog comment I posted on May 9, 2007 addressed to Prime Minister Stephen Harper in which I expressed the hope that he would open his heart (I assumed he had one) and his mind (I didn't know it was locked solid) and help autistic children wherever they reside in Canada. 
Since this comment in 2007 the numbers of children estimated to have an autism spectrum disorder have increased, by CDC estimates, from 1 in 150 to 1 in 110.  
As recently as this election campaign James Moore of BC, a cabinet minister in the Harper cabinet, has expressed the views that autism is not a disability and that persons with autism are simply an interest group.  
Notwithstanding the presence  in the federal Conservative party of Mike Lake,  a dedicated father of an autistic 15 year old son,  the Harper government  understanding of autism disorders has regressed since my 2007 letter.
May 9, 2007
Prime Minister Stephen Harper
Dear Prime Minister
I am writing to you as the father of a severely autistic 11 year old boy living in Fredericton, New Brunswick and as an autism advocate for the past 8 years here in New Brunswick. Recently I was disappointed, bitterly disappointed, by two actions by your very tightly controlled government – the rejection of MP Shawn Murphy’s motion to amend the Canada Health Act to ensure autistic children, wherever they reside in Canada, would receive government funded treatment for their autism. Canada as a nation has long ago rejected the notion that accidents of geography should determine whether Canadians receive life sustaining or life enhancing medical treatment.
The arguments about constitutional jurisdiction advanced in justification are specious and you sir, with all due respect, know that. Canada has long operated on the basis of a model of cooperative federalism which has developed many legislative tools to ensure that narrow constitutional boundaries do not impair the quality of life in this great country. I will mention no specific examples because there are far too many for this to be a serious issue of contention.
Autism is a serious neurological disorder borne by 1 in 150 Canadians by currently accepted estimates. It also impacts on the lives of parents, siblings, grandparents and other caregivers. There is no known cure but there is a widely acknowledged, evidence based treatment available, Applied Behavioural Analysis, or ABA, which is supported by literally hundreds of studies, including recent studies, which document the effectiveness of ABA in improving the IQ, the linguistic skills and comprehension, the ability to function in the real world, of children with autism. In my son’s case, even with the limited ABA therapy which was available in New Brunswick at the time because of a shortage of trained personnel, he has made tremendous gains. From a child who could only scream and tantrum he became a child who can communicate using words, who is reading, albeit at a level below his chronological age, and who in fact almost daily pulls out books on his own initiative to real aloud for his own enjoyment. This is the ABA which parents seek across Canada, the USA and the world for their autistic children.
There are those who oppose ABA based on personal preferences, outdated and ill founded misconceptions about what ABA involves and quite simply on the basis of paranoid, conspiratorial beliefs that somehow they as human beings, as functioning adults, will be deprived of their personalities if someone else’s autistic children are taught fundamental living skills by use of ABA. They make stretched and tortured arguments about ABA turning children into robots. This is nonsense as they happy joyful pictures of my son which I will provide a link for in this letter can rebut with finality. They also make disingenuous attacks on the studies which have documented ABA based gains for autistic children ignoring the fact that literally hundreds of such studies exist all showing substantial gains. Critics also focus on costs of providing ABA ignoring the studies that have shown the huge financial savings to government in reduction of service provision over the lives of autistic persons who have benefited from ABA.
I do not actually expect you to personally read this email Prime Minister. I hope though that a conscientious staffer or, through the marvel that is the internet, a family member or friend, will see fit to read this and implore you to take action on behalf of Canadians with autism. You can make a difference in the lives of 1 in 150 Canadians Prime Minister. You can make a difference in the lives of their loved ones and care givers and you can save Canadian governments enormous sums by reducing the level of services required as a result of early intensive ABA intervention.
Please open your mind Prime Minister, open your heart, and do the right thing.
Respectfully,
Harold L Doherty
Fredericton New Brunswick

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