[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

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—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

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How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Andrew Kavchak]

Hi Folks,

As I glanced over the text of the CIHR report on their autism symposium, nothing really grabbed my attention in terms of real practical statements of what was missing and need in terms of access to treatment in Canada. I did not see any concrete suggestions for improvement in public policy. Maybe I missed something, but it does not appear that this document will feed into the public policy process in Ottawa and won't contribute to the development of a National Autism Strategy. This should come as no surprise either, since the CIHR person that organized the conference told me last year that no policy issues will be discussed. Instead, she indicated that the government's reply to the Senate Committee report would discuss policy. That document which Clement had tabled in the Senate last September completely ignored the recommendation of the Senate Committee for a National Autism Strategy and did not even mention the words.

So where are we federally? Well, we achieved some degree of success with the tabling and passing of the National Autism Strategy motion in the House of Commons, and the tabling of the Senate Committee report with recommendations. However, these are just words, and the government has not moved on these things or put any resources in the budgets towards the items in the motion.

You may recall that on November 22, 2006 FEAT of BC held a rally on Parliament Hill. Before that date the federal Health Minister Clement repeatedly stated that autism is a provincial matter. However, the day before the rally he held a press conference and began by stating that "the situation is now so serious that doing nothing is not an option" and he proceeded to outline five new initiatives. What were they and what has happened? In his speech at the symposium last November he gave an update.

First, funding for a new national Chair in Autism Research and Intervention. Last October 20, 2007 the government announced with BC the investment of $1 million to create such a chair at Simon Fraser University.

Second, consulting stakeholders toward developing an ASD surveillance program. Well, we know that they are now conducting an online survey, and if you scroll down this message board you will see a post exposing its flaws. Further, a more recent post indicated that while Ottawa is going through their "consultation process", in the UK the figures are being collected of the adult population for purposes of developing a strategy to be released next year.

Third, a new web page on the Health Canada website. Wow. The page apparently contains information about what the feds are doing…such as the dissemination of information by means of a webpage.

Fourth, designating the Health Policy branch as the coordinator for ASD action within the federal Health Portfolio. This is potential promising. So what happened? According to Clement: "federal action to address autism has been better coordinated than ever before". And…???? As far as I can tell, nothing.

Fifth, holding a stakeholder symposium. The symposium was initially set for the Spring of 2007 in Ottawa and then postponed to November 2007 in Toronto. The symposium was "by invitation only". The list of participants is impressive. Michelle Dawson and Laurent Mottron. Mike Lake even! (He's the MP with a child with autism who not only voted against Shawn Murphy's Bill that would have included autism treatment in Medicare, but he actually issued a pathetic letter explaining why he did so, which several MPs posted on their website and sent to parents like us to justify their voting against the Bill. FEAT of BC is the only organization to my knowledge that posted an annotated version of the disgraceful letter exposing it's false and misleading arguments.)

As I indicated up top, the symposium report came out now a full six months after the symposium and it does not appear to contain any useful content with respect to improving our country's policies and programs.

While Clement stated that "research is the backbone for all truly effective policies and therapies" and that "the more we share knowledge, the more we gain, and the faster we can translate discoveries into new, effective, evidence-based therapies that can provide true hope for Cnaadians living with ASD and their families", he completely ignored the fact that research has shown for over 20 years that there is an effective, evidence-based treatment available and that Canadians with autism are not getting access to it in Medicare. Instead, he had the audacity to say that families are often desparate and that "we have to guard against the urge of families to let this force them off evidence-based path being paved by so many of the researchers here today. As we all know, buying into false hope can have drastic consequences." Huh? Excuse me? We have been asking for access to the evidence-based treatment and despite all the evidence over the past two decades, it is people like Clement (a former provincial Health Minister) who have refused to supply the treatment under Medicare. Despite this incredible irony and distortion of reality, he went on to say: "as Health Minister, I am keenly aware of the crucial need to support the science behind actions that will ultimately benefit the many…". Excuse me Sir, but once the science has been identified, then what? Huh?

So what's the bottom line?

Clement has got to go!

[Andrew Kavchak]

Hi Folks,

It looks like the report of the CIHR "by invitation only" autism symposium that was held in Toronto on November 8-9, 2007, is now available at:

http://www.cihr-irsc.gc.ca/e/36237.html

[Andrew Kavchak]

Why do things always seem easier abroad? Why is Canada so often way behind?

Recently the autism community in Canada was informed that, pursuant to federal Health Minister Clement's 2006 announcement that the federal health bureaucrats will explore ways to monitor the extent of the autism crisis in Canada and the prevalence rates, the Public Health Agency of Canada is only now apparently consulting with Canadians about what can be done to track autism in Canada through an online questionnaire. This exercise was recently subjected to some exposure for its flaws and criticism, as reflected on the FEAT BC website.

While the federal government Health Department or Agency officials go through their flawed process (let's be clear on something: in Ottawa "the process is the message", as Marshall McLuhan would likely say), the UK government made an announcement that was just reported in the media (see below). Apparently, adults with autism will be counted and the information will be used for purposes of developing a government strategy that will be published next year. Holy smoke! There seems to be some sort of action…they are actually taking numbers and feeding the data into the development of policy that will be a national strategy. And why can't we have similar action in Canada?

(Incidentally, is "Care Services" Minister Ivan Lewis related to Jean or Mike Lewis? Congratulations to the Lewises! A clan on the move that gets things done!)
_____________________________________________

From:
http://ukpress.google.com/article/ALeqM5iQFAFc1wEYqLEIay_TGZFwvDC6xw

Adults with autism to be counted
12 hours ago

The number of adults who suffer from autism in England will be counted for the first time.

Care Services Minister Ivan Lewis unveiled the £500,000 project, which aims to include adults who have not yet been diagnosed.

The information will be used to devise the first Government strategy on adults with autism and Asperger's syndrome, due to be published next year.

Mr Lewis said: "Adults with autism and Asperger's syndrome are too often abandoned by services with their families left to struggle alone.

"Equally, people are frequently misappropriately referred to either mental health or learning disability services.

"We still don't know enough about autism, but we do know that, left unsupported, it can have a devastating impact on those who have the condition and their families. "One of the key gaps in our knowledge is simple; we don't know how many people have the condition in any given area. That is why I am ordering a study to address this."

As many as one in 100 children are believed to have autism, and the new study will partly focus on their transition into adult life.

The research is being led by a team from the University of Leicester.

A recent survey by the National Autistic Society revealed 63% of adults with autism feel they do not get enough support. The charity has welcomed the new study.

Chief executive Mark Lever said: "We warmly welcome today's announcement from the Department of Health.Through our I Exist report, adults with autism told us they feel isolated and ignored. We are therefore delighted that the government has listened and is taking action."

[Andrew Kavchak]

Hi Folks,

This is a really awful story. Not only is our community continuously facing obstacles from the healthcare system, politicians, school boards, bureaucrats, etc….but as a means of last resort, and only as a last resort, families have been forced to resort to legal action.

You'd think that by hiring a lawyer you would be advancing your case, and not ruining it. Well, I remember years ago a friend of mine with an autistic child told me that she was part of a group of parents who were starting a major lawsuit that was seeking millions in damages in relation to the lack of services for autistic kids or something like that. Their lawyer? Someone called Jonathan Strug.

Well, I remember asking her if the Statement of Claim was filed. Yes it was, she said. Was the Statement of Defence filed? I was curious to know what the government's counter-arguments were. Not sure, she said. Jonathan was taking care of it though, she added.

Well, well…The story below is just unbelievable. You have to read it to believe it. Now some people are diverting their precious time, energy and resources to fighting a lawsuit against the former lawyer and his former firm, rather than the government/school boards, etc… And how does that help the kids who have needed treatment urgently for years? The government must be laughing. I have not communicated with my friend in a long, long time. But the last time I heard she was on sick leave from her employment. This is a weird planet. It really is.
__________________________________
Toronto Sun,
Wed, May 7, 2008.

Young lawyer's meltdown

Jonathan Strug disbarred over series of phantom legal cases with families of schoolchildren

By MOIRA MACDONALD

Jonathan Wade Strug was a promising young lawyer with one high profile case and one landmark lawsuit under his belt within three years of being called to the bar in 2002.

Yesterday his career came to a crashing, mystifying finish as the Law Society of Upper Canada disbarred the 35 year old for a series of phantom legal cases he duped families of schoolchildren into believing he was pursuing for them.

Readers might best remember Strug for his work as one of the lawyers who successfully represented Marc Hall, the gay Durham Catholic school board student who wanted to bring a male date to his prom in the spring of 2002.

But Strug really proved his mettle when, first as an articling student, and then as a junior lawyer, he worked on the landmark Wynberg case with the well-reputed law firm Eberts, Symes, Street and Corbett (now Eberts, Symes, Street, Pinto and Jull).

The case involved families of autistic children who say the Ontario government had violated their children's rights by denying them a special — and costly — therapy called Intensive Behavioural Intervention (IBI) once their children turned six. The families won in March 2005. But the McGuinty Liberal government successfully appealed the ruling in July 2006, saving itself millions of dollars in IBI costs.

Strug gained respect from special needs parents for his work, knowledge and sensitivity. As a result, other parents approached Strug for help with their own school board battles.

But between Wynberg Part I and II, the young lawyer melted down — unbeknownst to his firm, it says — perpetrating a massive deception on the non-Wynberg families. He left the Eberts firm in October 2005, in the midst of helping to prepare the fight against Wynberg Part II.

Through his lawyer William Trudell, Strug, now a warehouse worker, admitted his guilt and remorse yesterday in eight separate phantom cases. He was not in the Law Society hearing room, counselled by Trudell to stay away because of his fragile mental state.

But in the words of the Law Society's panel chair, Brad Wright, Strug "repeatedly, deliberately misled, even lied to many clients, other lawyers, and the senior partner in his own firm."

What is mystifying however, is why Strug put so much time and energy into lying. It wasn't like he was doing nothing. He continued to work overtime, preparing well-done statements of claim, showing children's families fake court orders in their favour, giving them false court dates, telling them he'd won them money awards, even encouraging them to publicize their cases with the media — yet no paper had been filed. The cases did not exist.

Strug told Neil and Natasha Cuddy, parents of a boy whom they believed had been inappropriately labelled as learning disabled, he had filed a judicial review application for them against Ontario's privacy commissioner regarding access to documents. But when I called the courts in late September 2005 to verify the filing, I was told it did not exist. It was that call that led to the revelation Strug had lied to the Cuddys about what he was doing — and the first complaint Strug was not all he seemed.

The Cuddys — not part of yesterday's Law Society action — are now suing Strug, along with his former firm. Other families say they are also suing Strug and the Eberts firm.

The question is, why did he do it? The best Strug's lawyer can come up with is his client was overwhelmed, sleep-deprived, exhausted, severely depressed and lost his judgment.

But for the devastated families, there are still many questions.

These people not only saw their trust trampled by school boards, and then the lawyer who was supposed to help them, but also watched their children permanently lose out on educational opportunities because a lying lawyer cost them valuable battle time.

"I could imagine doing it to one person. [But] autism is so politically charged," says Carolyn Borgstadt cryptically. Borgstadt is the mother of an autistic boy and was nearly sued for slander after Strug recommended she go to the media about her school board's non-compliance with court orders, when in fact Strug had never got the orders in the first place.

"It was crushing, absolutely crushing."

[Andrew Kavchak]

Thanks to Nancy Morrison's news list…two items of note…
______________________

Updates on Stefan's Hunger Strike:

Stefan agreed to drinking some Gatorade last night that a parent brought to him. Another father took him a sleeping bag, a blanket and a couple of lawn chairs. He's sleeping in the park to the north of Wellesley Street. It's not "Legislative Grounds," although it's still technically "Queen's Park."

Visitors yesterday included Andrea Horwath, Peter Shurman, some Liberal staffers and Deb Matthews, who invited him into Queens Park to meet with her today, to work out a solution for this. Stefan did an interview with 88.1 CIUT, the U of T radio station and another with a woman from Canadian Press..

Some other parents have shown up to talk to him and help him too.

Stefan had a meeting at Matthews' office this morning, but he's now back at the Leg. He told them during the meeting that he wants four things: (1) The waitlist must be eliminated by November 1, (2) There must be ABA in schools, (3) They need to work with Ottawa to develop a national autism strategy and get more funding for Ontario and (4) Therapists need to be regulated. CHCH-TV Hamilton and the Hamilton Spectator are expected out later today.

Lisa McLeod has been out to visit, and Peter Shurman has been out again. Lisa has said she'll ask a question today, and Peter said he's going to ask one tomorrow. Informatin is that the Premier was asked about Stephan in a media scrum, but no word about by whom or what the response was.

——————–

And don't forget to tune into W5 before the hockey game on Saturday night. 7pm on CTV:

Saturday, May 10

Road to Ruin – Canadians lose millions after investing in a company that offered to make big real estate profits.

Life on the Brink – Families go deep into debt to pay for treatment for their autistic children.

[Andrew Kavchak]

Hi Folks,

Remember a couple of months ago that a parent of an autistic teenager in Toronto, by the name of Stefan Marinoui, walked through blizzards from Toronto to Parliament Hill in Ottawa to draw attention to the need for a national autism strategy? Well, he just started a hunger strike on the lawn of the Ontario provincial legislature (Queen's Park) in Toronto.

[Andrew Kavchak]

Get ready folks, it's mental health week!
________________________________________
House of Commons
Hansard
Monday, May 5, 2008.

Statements by Members

Mental Health

Mr. Patrick Brown (Barrie, CPC):

Mr. Speaker, mental health week is upon us. I am pleased to take this opportunity to update the House on Canada's new mental health commission.

It was just last year that this Conservative government, led by this Prime Minister, established the mental health commission to bring forward real action and solutions to the issues facing Canadians. In budget 2007, we committed $55 million to the commission itself and then this past February, we announced an additional $110 million for five regional projects.

These projects will undertake activities in three areas: facilitating the development of the national mental health strategy, fostering knowledge exchange, and undertaking public education and public awareness activities to combat the stigma associated with mental illness. The new mental health commission will develop these projects and implement them in five cities across Canada: Vancouver, Winnipeg, Toronto, Montreal and Moncton.

Mental health is a significant public health issue. I applaud the government, mental health agencies and groups across Canada for their passionate and committed work. Canadians have asked their government to get involved, and that is exactly what this government has done.

[Andrew Kavchak]

Just when you thought you heard it all…

Sabrina, you'll have to add a new chapter to the next edition of your treatment evaluation text! I don't know if there are any sound studies showing the usefulness of marijuana consumption as a treatment for autism, but I suspect the second-hand smoke may have the side effect of taking the therapists' mind off things or skewing their perception of whether the child's performance is improving.
___________________
Salem-News.com (May-05-2008 08:54)

Autism, ADD, ADHD and Marijuana Therapy

Dr. Phil Leveque Salem-News.com

Phillip Leveque has spent his life as a Combat Infantryman, Physician, Toxicologist and Pharmacologist. He is an expert in medical marijuana treatment.

Image courtesy: medicalmarijuanablog.com

(MOLALLA, Ore.) – It has been known for at least 2,000 years that Marijuana/Cannabis is a psychotropic that affects the brain and central nervous system. (The Scythians) The first western references seem to be that it was a euphoric, in other words a central nervous system stimulant not like cocaine or amphetamines but a gentler pleasant stimulant.

Dr. W.B. O'Shaunessy (see: Medical Marijuana Feb-21-2008) found it to be an anti-convulsant against Tetanus, which may seem to cloud the issue. It is also a good anti-epileptic and centrally acting analgesic even effective for migraines as well as an anti-depressant and anxiolytic.

Dr. Tod Mikuriya has written that it promotes homeostasis or normalization of function in many various systems of the body and also modulates or moderates emotional hyperactivity such as Post Traumatic Stress Disorder, often known simply as PTSD.

I had heard or read about California marijuana doctors reporting that it was effective for the treatment of ADD and autism. These were single or isolated reports because physicians seemed to be reluctant to even talk about what the U.S. government constantly bleats about a "dangerous addicting drug", marijuana.

Dr. Mikuriya reported in 2006 in O'Shaunessy marijuana magazine that a 15-year old child was brought to him by his mother. He had been diagnosed with ADD and psychoses and had been given over 30 different kinds of drugs including pulverized kitchen sink, most of which made him combative and worse. He had used marijuana at age 11 with older friends.

It had a calming effect but his use brought police action and three court ordered rehabs which really drove him crazy. His mother found Dr. Mikuriya who prescribed Marinol which worked. A judge would not let him use ut, but a second judge did allow it and he got a marijuana permit and smoked it with dramatic improved results.

I decided a search of the Internet was advisable and I typed up marijuana autism with the surprising finding that the Autism Research Institute posted an article by Bernard Rinland Ph.D. Medical Marijuana: a valuable treatment for autism in 2003. The site discussed a letter from a mother of a violently autistic child. A friend suggested a marijuana brownie cookie which in the words of the mother "saved my child's life and my family's life."

The article continues to state that many parents in the same situation have reported marked success.

A second article from the American Alliance for Medical Cannabis (AAMC) in 2002 written by Jay R. Cavanaugh Ph.D. titled Medical Cannabis and Brain Disorders reported effective use as follows: Bipolar disease (81 patients or 20%)ADHD/ADD (53 patients or 13%)Multiple Sclerosis (32 patients or 8%)and neuropathy (35 patients or 9%).

Other interesting findings were PTSD (30 patients at 7%) and obsessive compulsive disorder (2.4 or 6%). They also reported successful treatment of Tourettes, Parkinson's, and Autism (10 patients or 2%)

It is time we got our medical dinosaurs M.D.S. out of the closet and educated to the marvelous benefits of this safe effective NEW-OLD medicine.

[Mike & Jean]

You can now view the "Medicare for Autism Now!" Ontario campaign tour summary, complete with photos on our blog:

http://www.medicareforautismnow.blogspot.com

[Mike & Jean]

“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.

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

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. 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 http://www.autisminnb.blogspot.com 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! 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: http://www.canadianswithoutborders.blogspot.com 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! 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. 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.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

Or email us at: mfanow@gmail.com

In the next week, we will be adding this narrative plus video of the Ottawa press conference, the Canada AM interview, the CFRA radio interview and many photos of the entire Ontario tour including the Oakville rally to our blog…check it out at:

http://www.medicareforautismnow.blogspot.com

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

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