Thursday, May 22, 2008

Ottawa Press Conference, Medicare for Autism NOW! April 14th, 2008

Here are the long awaited videos from the Ottawa Press Conference on April 14, 2008

Jean Lewis

Stefan Marinoiu

David Marley

Senator Jim Munson

Dawn Black, MP

Andy Scott, MP

Shawn Murphy, MP

Stefan Marinoiu

Sunday, May 11, 2008

W-FIVE : On the Brink

This weekend CTV aired a W-Five episode that focussed on the wait lists for therapy.
It was called: "On the Brink" and had some great interviews with families.

Video Clip 1: Meet families struggling to live with the financial burden of funding their own child's Applied Behavioral Analysis (ABA) therapy - which can cost as much as 80,000 dollars per year for each child.

Video Clip 2: Ontario's ombudsman reports 150 complaints about therapy wait lists, in April 2008 alone. The office says it will continue to monitor the issue and may investigate in the future.

Sunday, May 4, 2008

“Medicare for Autism Now!” Ontario Tour – April 13th to 20th

We returned from our Ontario “Medicare for Autism Now!” campaign tour just over a week ago. I apologize for not providing this update sooner, but as all parents of children with autism know, family priorities must come first.

We made the trip to Ontario primarily for three reasons:

1. To continue building a national coalition, which includes Ontario parents/activists who are prepared to participate in our “Medicare for Autism Now!” political campaign in the next federal election to have autism treatment covered under Medicare.

2. To introduce our “Medicare for Autism Now!” non-partisan political campaign and establish relationships with Ontario parents, supporters, other voters, and local media in Parry Sound-Muskoka and other key target Ontario ridings.

3. To gain national “earned media” for our campaign.

I am pleased to report that we succeeded in meeting all three of our objectives! Following is a more detailed description of the week’s events.

David Marley, our political strategist and I arrived in Ottawa late in the evening of Apr. 13th.

Monday, Apr. 14th began with an interview with Canada AM which went extremely well. We were then joined by Stefan Marinoiu. As many of you know, Stefan lives in Toronto with his wife Bernadette and their three children, Lia who is 17, Simon who is 15 and severely autistic and Paul who just turned 6. Simon has never had the benefit of any intervention quite simply because the system failed him and his family. Last February, out of desparation, Stefan walked from Toronto to Ottawa (450 kms.) to raise awareness about the autism crisis in Canada. After 11 days of walking, he met with health minister Tony Clement for about 15 minutes, only to be told…. “this is a provincial issue”…no questions or concern for Simon, or Stefan, just more political indifference.

Thanks to the kind donations of many of you, Stefan got to fly to Ottawa this time! Stefan spent the rest of the week campaigning with us, so now, our Travels with Stefan:

Stefan, along with David, Senator Jim Munson, Senator Norman Atkins, MP Andy Scott, MP Shawn Murphy, MP Dawn Black and myself all spoke at our “Medicare for Autism Now!” press conference which was held in the Charles Lynch press room on Parliament Hill at 11:00 on Apr. 14th. The support for our campaign on Parliament Hill is growing as is the media attention. Our initiative is being taken seriously. When we had a press conference last May, one camera attended; there were 7 on Apr. 14th. including W5.

Jean Lewis at Ottawa Press Conference

Stefan Marinoiu at Ottawa Press Conference

David, Senator Norman Atkins, Jean, Stefan and Senator Jim Munson at lunch hosted by Senator Atkins.

On Monday evening we drove up to the town of Huntsville which is in our federal health minister Tony Clement’s riding of Parry Sound- Muskoka We spent the next three days campaigning and “main-streeting” in Huntsville, Gravenhurst, Bracebridge, Parry Sound and Orillia. We met with all the editors of the local newspapers and their advertising managers. We did an extensive interview with the Bracebridge Examiner and the Parry Sound North Star.

Jean and Stefan at Bracebridge Legion

Huntsville Forester Newspaper Office

Tony Clement’s Huntsville Constituency Office

David and Stefan outside the Gravenhurst Banner office.

We distributed brochures and other hand-outs to hospitals, clinics, libraries, recreation centers, senior centers, community colleges, legions, coffee shops, and even paid a visit to Minister Clement’s constituency offices in Parry Sound and Huntsville.

Tony Clement’s Parry Sound Constituency Office

We really worked the room! It was a very interesting experience to say the least and we learned some very valuable lessons: Not one person, and I mean, not one person asked, “What is autism?” sadly, it seems like everyone we spoke to knows someone who has it. And everyone we spoke to without exception agreed autism treatment should be covered and supported our initiative to secure it. It is also abundantly clear that support generally for Mr. Clement is extremely weak. The support from the people who live in Parry Sound-Muskoka was no surprise to us. Why? Because Canadians are fair-minded people who expect our government to do the morally right and economically sensible thing by our children.

Throughout our Travels with Stefan, he shared stories of other fair-minded Canadians he met during his trek from Toronto to Ottawa. He told us of people who were “strangers” stopping their cars to ask if he needed help, gave him money, paid for meals, alerted restaurant owners to provide him with anything he wanted. These “strangers” paid for his hotel accommodation, in one case, opened their own home to him to provide food and shelter. A church congregation gave him all of their Sunday collection and bought him new boots and gloves. All of these “strangers” or fair-minded Canadians heard Stefan’s story, which is sadly the same story of countless other Canadian families dealing with autism, and responded with overwhelming support and encouragement to “keep on going – your cause is just!”

On Wednesday, the 16th while in Parry Sound, I did a phone-in talk show interview from the editor’s office in the Parry Sound North Star with the Ottawa radio station CFRA which aired from 1:20 to 1:40 p.m. I managed to do this after “calming the hystrionics and bad words” which filled the air after David locked the rental car keys in the trunk along with most of our materials….thank goodness for locksmiths! About our rental car – it was a black Charger with tinted windows and a spoiler….we looked like we came out of “Smokey and the Bandit.” Just before the “key incident” we happened to park the car beside a vacant store which had a poem about walking posted in the window….Based on Stefan’s walking experience, the wording seemed very poignant so I took a photo for you all to see.

Stefan and David outside the Bobby Orr Museum and Ice Arena

David and our “Smokey and the Bandit” rental car

On Thursday, the 17th. we drove to Toronto via Orillia and Barrie where we stopped in at the Orillia Packet and Times and the Barrie Examiner.

Stefan and David outside the Barrie Examiner office

We were joined that evening by Harold Doherty who is a dad and very effective advocate from Fredericton, New Brunswick. Check out Harold’s blog: “Facing Autism in New Brunswick” at We met Harold last May when we were in Halifax. He is going to co-ordinate our political initiative in the Maritimes. Harold flew from Fredericton to join us in Toronto to meet with media and speak at our “Medicare for Autism Now!” rally in Oakville. That evening David, Harold and I had dinner with Stefan and his family. Bernadette provided a lovely meal and warm hospitality. Meeting with Stefan and his family and particularly meeting Simon, who is 15 and has never had intervention was a shocking reminder to me personally of why we must have autism treatment universally accessible under Medicare! Our son is one year younger then Stefan’s son. He has benefited from 11 years of intervention solely because we had the means to provide it….that’s all! That this situation still exists in Canada where we have had Medicare for almost 40 years and a Charter of Rights and Freedoms for 25 years is no longer acceptable! The evening provided a sharp reminder that our expectations are reasonable because all our children, regardless of where they live, or how much money their families have are indeed worthy of treatment!

On Friday, the 18th we met with the producers of W5. They are producing a program about our political initiative which is scheduled to air on May 10th. After an extensive interview with Sandi Rinaldo we had lunch and further discussion with some CTV NEWS producers. They are extremely interested in our initiative and have expressed interest in covering it during the election campaign... national “earned media” – just what we need!

David in conversation with W5 cameraman

Friday afternoon, we met with Bob Rae who is the Liberal party’s policy co-chair. We had a very frank and useful conversation with Bob who listened closely, asked lots of good questions and demonstrated a pretty good understanding of the issue and the “road-blocks” More on this in due course. Friday evening, we met with Deborah Coyne who lives in Toronto, is a mom, a constitutional lawyer, will be seeking elected office in the next federal election and is a supporter. Check out Deborah’s blog:

David and Deborah Coyne

We also met with Gordon Shreeve who is a seasoned campaign organizer. Gordon does not have a child with autism but he is committed to helping us organize some of the Ontario target ridings. He is a wonderful addition to our team!

On Saturday, the 19th we had our “Medicare for Autism Now!” rally in Oakville. About 40 people attended mainly from Burlington, Oakville, Mississauga and Toronto. Jennifer O’Brien was the local organizer and did a fabulous job!

Jennifer O’Brien

The speakers included: Stefan, Harold, Deborah Coyne, Barry Hudson who is a dad of a 4 year old from Mississauga, David and I. Norrah Whitney who is the director of FEAT Ontario also said a few words. Our message was well received! The turn-out was reminiscent of where we were one year ago in BC, but the people who attended were motivated and ready to go! W5 attended and filmed the whole two hours plus interviewed a number of people. One of the W5 producer’s wife who owns a pre-school and the W5 production manager also attended.

Norrah Whitney FEAT Ontario

Harold Doherty

Stefan Marinoiu and David Marley

Barry Hudson

David Marley

Map of Ontario target ridings highlighted in yellow.

Our day concluded with one more meeting. We met with another very talented political organizer, and former leader of the BC Green Party named Stuart Parker. Stuart is doing a PhD at the University of Toronto and is an associate of David Marley’s. He has committed to helping us with some of the Toronto ridings during the election. His skills and smarts will be tremendously helpful to us.

Whew - that’s it! We flew home on Sunday the 20th and have pretty much being playing catch-up!

We would like to thank all of you who so generously donated money to make this trip possible! In order to move forward with the next steps, we need to raise more money a.s.a.p. We want to do an advertising campaign in Parry Sound-Muskoka which will run all summer. We are asking the papers for quotes right now. We need your help to make it happen. We also need to raise money to cover our next trip, which will be during the election campaign. Stay tuned for information about upcoming fund-raising events! In the meantime, please feel free to donate:

Cheques are payable to:

Medicare for Autism Now
C/o Suite 425 – 1489 Marine Drive,
West Vancouver, BC
V7T 1B8

We will be adding video of the press conference, Canada AM interview, CFRA radio interview and photos of the tour and the rally to the blog shortly.

Remember to tune into CTV’s W5 on Saturday, May 10th. Check your local listings for time and channel.