Showing posts with label Peter Stoffer. 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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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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Liberal and NDP Autism Advocates in Election 2011


Glenn Thibeault            Peter Stoffer           Ruby Dhalla           Brian Murphy

Although our federal government has done very little to help autistic Canadians receive effective evidence based early behavioural intervention, autism specific education and accommodation or decent residential care for autistic adults it is not for lack of trying by several members of parliament who are running again in Election 2011.   Peter Stoffer,  a Nova Scotia (Sackville-Eastern Shore) NDP candidate,  has been involved in national autism advocacy for many years and co-sponsored, with former Fredericton MP Andy Scott, a motion seeking to implement a national autism strategy.  Glenn Thibeault an NDP candidate from Sudbury Ontario also brought a private members motion in support of autism.  During debates in the House of Commons  both New Brunswick (Moncton)  Liberal candidate Brian Murphy and Ontario (Brampton-Springdale) Liberal candidate Ruby Dhalla gave strong speeches on behalf of autistic Canadians. 

This autism dad and advocate hopes that all of these strong autism advocates are re-elected on May 2. 

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