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

Medicare's Orphans. from MedicareForAutismNow on Vimeo.

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. 

Ontario's Brutal Autism Reality, For Autistic Children It's Not A Place to Stand and Grow

Give us a place to stand And a place to grow

And call this land Ontario.
A place to live
For you and me
With hopes as high
As the tallest tree.
Give us a land of lakes
and a land of snow
And we will build Ontario A place to stand, a place to grow
Ontari-ari-ari-o !

From western hills,
To northern shores.
To Niagara Falls,
Where the waters roar.
Give us a land of peace,
Where the free winds blow.
And we will build Ontario A place to stand, a place to grow
Ontari-ari-ari-o

Dolores Claman and Richard Morris, A Place to Stand

If they think of autism in Ontario the three anti ABA amigos, Morton Ann Gernsbacher, Michelle Dawson and Dr. Laurent Mottron. must be very, very happy. In the province where I attended high school (General Panet High School, Petawawa), and worked for several years (Ottawa, Toronto), ABA services for autistic children are in such a state that many autistic children miss out on the chance for optimum development in the preschool years. Barry Hudson, a well informed father of an autistic child active in autism advocacy, described in a recent comment to me the situation in the province which was once, but is no longer for autistic children, a place to stand and a place to grow:

"In terms of how things are for services in Ontario they have actually gotten worse since your last post about Ontario. I have seen letters newly diagnosed parents have received from the Ministry responsible for ASD therapy funding (post diagnosis) and they are being told now that funding for therapy can be 3 – 4 years, add the wait for diagnosis (usually one year) and the quickest Ontario funds therapy is 4 years (we waited just shy of 3). The reality of Ontario is that most will not see funding until 5 years. The government does not even bother to pretend to care now since they have the economic excuse, last time I had any communication with my MPP I was flatly told to not bother to make any contact on this issue – the government intends to do nothing more than what is being done now.

As you have written many times - the parents are largely left to their own and no government is serious about aiding the vulnerable. In Ontario it is very trendy for politicians to make grand statements to support helping the truly vulnerable but when delivery is needed the vulnerable are getting “all we can afford”. The recent spending scandal here for a billion dollars blown [it will likely tally to over $1.7 billion when the dust settles] on an eHealth system that did not get delivered shows me that it is more important for the pigs to be at the troth than anything else."

Forty-two years after Ontario's unofficial anthem took to the airwaves the government of Ontari-ari-ari-o is simply not helping it's autistic children to stand and grow.

autism

Medicare for Autism NOW! in Oakville, Organizing and Sending A Message

It was a warm sunny day in Oakville yesterday as the Medicare for Autism NOW! team gathered at the Iroquois Ridge Community Centre to meet families in the communities west of Toronto, to organize and to send a message to ALL federal politicians: Canadians are suffering from a NATIONAL autism crisis. Some autistic children, depending on where they live, receive NO treatment for autism. The lack of treatment prevents some autistic children from living a full life and imposes emotional and financial hardship on family members.

Many of us have talked about a National Autism Strategy to address Canada's national autism crisis for years. Some politicians of character and conscience, people like Senator Jim Munson and MPs Andy Scott, Peter Stoffer and Shawn Murphy have actively campaigned for a National Autism Strategy. Stephen Harper, alleged Health Minister Tony Clement and Conservative MP and autism father Mike Lake on the other hand have largely mocked the efforts for a national autism strategy. Aided and abetted by Dr. Rémi Quirion and the CIHR the national autism strategy has been reduced to a less than mediocre web site and a secretive, politicized and staged National Autism Symposium that resulted in absolutely NO autism information being disseminated to Canadians.

Yesterday I had the privilege of speaking at the Oakville rally along with Jean Lewis who has led litigation and political autism battles in British Columbia and experienced political organizer David Marley. We were joined by Jennifer O'Brien from Oakville, autism winter trek hero Stefan Marinoiu from Toronto, Barry Hudson from Toronto and constitutional lawyer Deborah Coyne from Toronto. Medicare for Autism NOW! is national in scope. We are organizing coast to coast and we have a message for federal politicians of all stripes. Something must be done NOW. We need Medicare for Autism NOW. David Marley, show in the bottom picture below has prepared a strategy. A number of ridings that were decided by 2% or less in the last election will be targeted for election action by the Medicare for Autism NOW team. We will be making an impact in those ridings on behalf of the candidates, whatever their political stripe, who support Medicare for Autism NOW. David Marley is also organizing of team of people with political organizing skills and experience to help get our message across effectively.

One of the key ridings will be the Parry Sound Muskoka riding of Alleged Health Minister Tony Clement. Mr. Clement won by one of the smallest margins of any MP in Canada in the last election. Stefan Marinoiu, David Marley and Jean Lewis toured the riding this week and apparently there is already, for various reasons. substantial dissatisfaction with Mr Clement amongst his riding constituents who were also very supportive of the Medicare for Autism effort. Medicare for Autism NOW! will be active in the riding of alleged Health Minister Clement to remind constituents of Mr Clements refusal to help autistic Canadians and their families.

Iroquois Ridge Community Centre in Oakville

Jennifer O'Brien

Jean Lewis

Stefan Marinoiu

Deborah Coyne

Barry Hudson

David Marley

autism