Showing posts with label David Marley. Show all posts

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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Autism Parents: "You Need To Take Your Heart In Your Teeth And Go On ... And Go On"

"For those parents who say they are too broke and too tired...you need to take your heart in your teeth and go on...and go on...." 


Stefan Marinoiu, Medicare's Orphans


David Marley, Simon Marinoiu, Jean Lewis, 2008

The above comment by Stefan Marinoiu, father of a severely autistic son, Simon Marinoiu,  is great advice for parents of autistic children.  It is the advice of a man who has literally walked that path and knows of what he speaks. As the parent of a severely autistic son I do not always want to hear from people who know nothing of the realities of severe, low functioning autism disorders telling me what is best for my son or what I must do to help him.  When I listened to Stefan Marinoui though I was listening to one who knew of what he talked, one who had quite literally walked the walk.

On January 31, 2008 in the middle of a cold Canadian winter Stefan Marinoiu left his home in the Toronto suburb of Scarborough and began walking with only the clothes on his back to Ottawa to raise awareness about the lack of services for people like his son Simon, a strong young man with limited communication abilities and serious behavior issues. When Stefan arrived safely in Ottawa, after receiving help from well wishers he met on his journey, he met with then Health Minister Tony Clement. 

Unfortunately Tony Clement, and the government of Prime Minister Stephen Harper were not genuinely moved by Stefan's journey. They have done absolutely nothing to ensure that  all autistic children in Canada received evidence based ABA treatment for their autism. They have done nothing to ensure that autistic adults in Canada have access to decent residential care and treatment. Gazebos, prisons, jet fighters sure, but not real help for autistic Canadian children or adults.

I met Stefan and his wonderful family when I, along with Jean Lewis and David Marley of Medicare for Autism NOW!, visited their home in the Toronto area in 2008.  Stefan is a modest person of great focus and presence.  There is no hidden agenda. His concerns are clearly and succinctly expressed in compelling language as in the advice quoted above.  I was deeply moved by the Marinoiu family, for the love they have for Simon, by their struggles to help him and by the impact Simon's autism has had on their lives.

In Medicare's Orphans Stefan, wife Bernadette and daughter Lia speak about what Simon's autism is like and what it has meant to them, the impact it has had on the members of their family.  If you watch this film and listen to Stefan, Bernadette and Lia, you will be moved.  Listening to their stories again strengthens my resolve to continue advocating for my son Conor and other children and adults with autism disorders. It strengthens my resolve to fight for early intervention, effective, real education and decent residential care for autistic children and adults here in New Brunswick and across Canada.

If you are a parent of a child with an autism disorder I encourage you to view the Medicare's Orphans film and "take your heart in your teeth ... and go on ... and go on".

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Medicare's Orphans: The Fight for Healthcare for Children with Autism Disorders

Medicare's Orphans – A film about the fight to get healthcare for children with autism in Canada  is now online.  I encourage everyone with an interest in autism disorders, anyone interested in advocating for treatment and cure for this serious neurological disorder to view this film. I make a few appearances in this film. It was an honor to participate in this effort with each and everyone of those featured.  
In particular, I had the opportunity a few years ago to meet the Marinoiu family from Toronto. Their son Simon is very similar to my son Conor. I was deeply moved by my experience meeting this wonderful family. Simon's life, his future, is very close to what can be expected for my son here in New Brunswick where our system of adult care for people with severe autism disorder challenges has been frozen by a non evidence based community cliche movement that prevents any serious discussion of adult care beyond the group homes that currently can't handle the challenges presented by severe autism. The result is that severely autistic adults like my son live in a psychiatric hospital in northwestern New Brunswick.

To confront the very real challenges for Canadians with autism disorders it will be necessary for new generations of Canadian parents, and sympathetic professionals, to step up to the plate and fight. The fight has been taking place for years.  The fight must continue. Parents in particular must begin again to fight for our children.  

Begin by watching Medicare's Orphans. 

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Medicare for Autism: Lewis and Marley Speak Up!



David Marley and Jean Lewis On the Need 
for Medicare Coverage for Autism Disorders

Jean Lewis, for 13 years, and David Marley, for 6 years, have been advocating, fighting is the better word given the powerful interests they have had to challenge, for medicare coverage of autism treatment in Canada. Autism disorders are exactly that ... disorders, very serious disorders in many cases, yet in Canada we do not consider intervention for autism disorders as treatments worthy of medicare coverage, we simply abandon our autistic children to the whims of social services bureaucrats in every nook and cranny of our very large nation.  

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Determined Autism Advocates Jean Lewis & David Marley Fight for Medicare Coverage for Autism Disorders



David Marley and Jean Lewis of Medicare for Autism Now!
Oakville, Ontario, 2008

David Marley and Jean Lewis of Medicare for Autism NOW! have been fighting for medicare coverage of evidence based treatment for autism disorders for many years.  I first met them in Halifax in May, 2007 and again in Oakville and Toronto in April, 2008.  Last year I had the privilege of seeing them again in Toronto while they were working on the film Medicare’s Orphans: Canadians Unworthy of Treatment  which is expected to set out the case for medicare coverage of autism treatment in Canada. The video below features Jean and David interviewed by radio host Bill Good.  It is the last trailer for the Medicare's Orphans film expected to be released this fall.




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