[Andrew Kavchak]

Hi Folks,

I was just scanning the news at noon today, in this final week of the election campaign, and noticed a newsflash: the Conservatives, that's right, Stephen Harper, Tony Clement, etc., have just announced $10 million for a National Strategy on Pulmonary Diseases.

Isn't that interesting…when it comes to autism, despite years of requests, there is no "national strategy". Apparently the matter is entirely provincial, according to Mike Lake and Co. But for some many other diseases the feds see fit to deal with the health issues with a corresponding "national strategy". Just two questions…are the provinces not already dealing with pulmonary diseases (or do they discriminate against that too)? And what did the Pulmonary Diseases Association do to get the attention it received? I've never even heard of the Pulmonary Diseases Association or Society or whatever. Hmmm….

[Andrew Kavchak]

From: http://www.canada.com/surreynow/news/story.html?id=8f45d08d-d1ba-40e0-b9c0-012848401d38

Group demands funding for autism

By Amy Reid

Special to Surrey Now

Tuesday, October 07, 2008

"We want medicare for autism and we want it now!" he cried to the crowd, and was met with a standing ovation.

The speaker, Wesley Romey, a 13-year-old boy who was diagnosed with autism at age six, was speaking to a crowd of about 300 people Saturday. The rally at Eaglequest Golf Club was to urge residents to vote for candidates who will fight for medicare coverage for autism treatment.

Autism NOW, a national coalition group, has targeted 14 ridings across Canada, including Newton-North Delta and Fleetwood-Port Kells, using its "two per cent solution." The tactic focuses on constituencies where current MPs won by two per cent or less in the last election, with the hope of influencing enough votes to elect supportive candidates.

The organization contacted the candidates in those ridings and asked them whether they will publicly commit to supporting medicare for autism if elected. In the two Surrey ridings, only the Conservative candidates have yet to respond. All other candidates from major parties have said yes.

Beverley Sharpe, one of the speakers, experienced first-hand the pitfalls of costly therapies.

When her child was diagnosed with autism, her husband left the family. She pawned anything of value, worked overtime, and to this day sleeps on her living room floor so she can rent out rooms in her house – all to pay for treatment for her daughter.

Wesley, though, was the speaker who particularly touched the crowd. Wesley shared with the audience his success with Applied Behavioral Analysis (ABA) therapy. He urged listeners to demand the government fund autism treatment, because he is proof that it works.

"I want to say this to every Canadian out there. It's not fair that every child with autism doesn't get the same chance that I did. If you don't stand up for your children, who will?"

Louise Witt, the Surrey campaign co-ordinator, said politicians must feel their pain, and have the strength to get the job done.

"We need to vote for the politicians who have the integrity to represent their constituents to Ottawa, not bring Ottawa to the constituents."
Medicare for Autism NOW will hold its next rally on October 9 in Ontario.

[Andrew Kavchak]

BCTV News (Global Vancouver) – Saturday, October 4 2008 – 23:00 (Local) – Segment #1
BCTV

Announcer: LIVE FROM GLOBAL BRITISH COLUMBIA "NEWS FINAL" WITH ANN, DREWA. ……

Ann: PARENTS OF AUTISTIC CHILDREN GETTING POLITICAL IN SUR SEUR TODAY THEY ARE MAKE SOME NOISE IN EFFORT TO BRING ABOUT CHANGE ANYWAY AUTISM IS LOOKED ON AND SUPPORTED. MICHELLE MEMBER LER EXPLAINS.

Reporter: MEET THEIR MOSTER AND THEIR SON RICHARD. PRETTY TYPICAL FAMILY. EXCEPT THAT THEIR IS ON IS AUTISTIC.

I AM A RASCAL.

ALONG WITH OTHER FAMILIES IN SUPPORTERS, THEY ARE PART OF GROWING MOVEMENT ACROSS THE COUNTRY THAT'S HOPING TO IMPACT THE FEDERAL ELECTION IN 14 RIDINGS WHERE OUTCOMES ARE EXPECTED TO BE CLOSE.

WHAT WE INTEND DO IS ELECT CANDIDATES REGARDLESS OF THEIR PARTY AFFILIATION, WHO WILL PUBLICLY COMMIT TO PASSING LEGISLATION TO AMEND THE CANADA HEALTH ACT. TO INCLUDE AUTISM TREATMENT UNDER MEDICARE.

SOME ESTIMATES SAY ONE IN EVERY 150 CHILDREN IN NORTH AMERICA IS AUTISTIC. THERE IS NO CURE. BUT THERE ARE TREATMENT THAT OFFER HOPE. THE PROBLEM THERAPY CAUSE 50 TO $80,000 A YEAR. AND IT IS NOT COVERED BY MEDICARE. PREF LENS OF AUTISM HAS GONE FROM ABOUT 4 IN 10,000. TO NEARLY 100 IN 10,000. FOR BOYS. AND YOU KNOW IF THAT WAS CANCER, CHILD WITH CANCER, WE WOULDN'T STAND FOR THAT.

Reporter: THE MEDICARE HAS DONE SOMETHING. THE CANDIDATES IN SELECTED 14 RIDINGS HAVE BEEN IS YOUR X-RAYED THE RESULTS ARE POSTED ON-LINE. FIVE OF THE CONSTITUENT ARE IN B.C. FROM COAST TO COAST, THE ONLY CANDIDATES WHO CAN CONSISTENT LOO NOT COMMIT TO INCLUDING AUTISM MEDICARE OR WOULDN'T RESPOND WERE FROM THE CONSERVATIVE PARTY.

WE MADE IT CLEAR IT IS NOT NON PARTISAN IT IS ABOUT INDIVIDUALS AND THEIR CHARACTER. I SAY, THAT THOSE CANDIDATES THAT DON'T RESPOND ARE DEMONSTRATING MORAL COWARDESS. SOME CONDITIONS LIKE AUTISM. DIFFERENT STORY IN THE U.S. ELECTION WHERE AUTISM GOT PLENTY OF AIR TIME. HERE, THESE FOLKS HAVE A FIGHT ON THEIR HANDS. INSPIRED ONWARD BY THE CHILDREN.

[Andrew Kavchak]

Tony,
I liked your post below very much. There are lots of people who seem to think that something is being achieved by supporting these autism "awareness" campaigns of numerous other organizations, but the message actually being promoted is really questionable. Regrettably, many people in the community in my neck of the woods (the nation's capital) miss the point and corresponding opportunities on a regular basis. The lack of cohesion is stunning sometimes and is used as an excuse by politicians to do nothing. I believe your post is worth elaborating on and posting somewhere where the public can easily access it…over and over again.
Cheers!

[Andrew Kavchak]

Interesting to compare the elections on both sides of the border. Who can deny that the US President has considerably more responsibilities and issues to deal with domestically and internationally than the Canadian Prime Minister. Yet, the candidates south of the border actually have time for autism. McCain actually mentioned autims in his nomination acceptance speech. Below is a short interesting article by one parent explaining why they are contributing to the Obama campaign.

When will Canadian political leaders decide to turn their rhetoric about "inclusion" into reality?
______________________
From: http://www.in-forum.com/articles/index.cfm?id=216154&section=Opinion&freebie_check&CFID=93461387&CFTOKEN=16802767&jsessionid=88302130fbe96c647f30

Obama has plan for autism research

By Sarah Beck,

Published Saturday, September 27, 2008

I stepped out of my comfort zone last week.

I volunteered for the Barack Obama campaign – not to lick stamps or stuff envelopes. I volunteered to call voters.

Ask my husband – I hate calling people.

But I’m doing it because I have a son with autism. While both candidates have voted to support the Combating Autism Act of 2006 and have expressed interest in increasing autism research and awareness, Obama is the only candidate to outline specifically what he will do for autistic Americans in the future.

His plan for the future – my son’s future – would include appointing a federal autism spectrum disorder coordinator to oversee research, monitor funding and train medical professionals to help screen for autism as early as possible. He also wants to fully fund Individuals with Disabilities Education Act, which allows every child with disabilities to receive the special education resources they need at school.

I feel that Obama is the only one who really gets it – who really understands that autism affects 1 in 150 children. Obama understands that families are struggling to find the resources and information to best help their children. He understands that early intervention funding now will pay dividends in the future when these children can be more fully functional in society, have a better quality of life, and decreased dependency on government programs in the future.

My son may only be 1 in 150. But he has a voice for change, too.

[Andrew Kavchak]

Hey, hey, hey!!! U.S. First Lady calls autism a "global health issue"! Why is it so difficult to get a single Canadian politician with hands on the levers of power to say the same thing and take corresponding action?
________________
From: http://www.iht.com/articles/ap/2008/09/26/news/UN-UN-Autism-Awareness.php

First ladies gather to raise autism awareness

The Associated Press
Published: September 26, 2008

NEW YORK: More than a dozen of the world's first ladies on Friday called for enhanced research on autism worldwide.

Ban Soon-taek, wife of the U.N. Secretary-General Ban Ki-Moon, said "not too long ago, those with autism were set aside.

"Today this reality is still prevalent in some parts of the world," she said.

Panama's first lady, Vivian Fernandez de Torrijos, emphasized that early intervention is key.

U.S. first lady Laura Bush also sent a note for the event, calling autism "a global health issue."

"As we work to identify what causes autism, it is important to raise public awareness as early diagnosis and intervention helps children achieve their maximum potential," she said.

Bob Wright, co-founder of the American advocacy group Autism Speaks, said there is a shortage of autism experts and trained professionals worldwide and that governments need to provide more funding to support affected families.

Wright's grandson was diagnosed with autism in 2004, after which he and his wife, Suzanne, started the group. In the U.S., one of every 150 children is diagnosed with an autism spectrum disorder, the group says.

Autism has always been diagnosed by making judgments about a child's behavior. For decades, the diagnosis was given only to children with severe language and social impairments and unusual, repetitive behaviors.

But in the 1990s, the autism umbrella was expanded and now includes a group of milder, related conditions.

In 2007, the U.N. adopted a resolution that declared April 2 World Autism Awareness Day.

[Andrew Kavchak]

From cbc.ca:

Mothers of disabled children juggle work schedules: StatsCan

Last Updated: Thursday, September 25, 2008

The parents of three out of five children with disabilities said their added responsibilities affected employment, and it was mothers who overwhelmingly said they adjusted their hours, Statistics Canada reported Thursday of a 2006 survey.

When parents were asked whose employment was most affected, 64 per cent of the time it was the mother's. In 25 per cent of cases, both parents said they adjusted their hours, while fathers said they did eight per cent of the time.

Other family members adjusted their paid work in three per cent of cases.

About 38 per cent of parents said they worked fewer hours, and another 36 per cent of survey participants said they adjusted their work schedules to accommodate children whose everyday activities are limited because of a health-related condition or problem.

"Flexible work schedules or options to telework are helpful for parents who need to care for their child and at the same time continue working," the report said.

During the 2006 survey, about 200,000 Canadian families said they were coping with the challenges of caring for a child with disabilities.

Families stressed

The severity of a child's disability largely determined the challenge to families, the report said.

The trend occurred in many aspects of the parents' lives, such as employment, finances, leisure, personal time and the ability to find help and child care.

Most parents said they were satisfied with the type of child care they currently had, but 21 per cent said a child-care service had refused to provide care for their child.

Half of parents reported sometimes or always feeling they had less personal time because of the responsibilities of their disabled children.

About 45 per cent also said their daily stress ranged from quite a bit to extremely stressful, and 26 per cent reported their child's health condition as the main source of stress.

About one in four parents received help in balancing daily activities, most often to squeeze in some personal time, attend to family responsibilities or get chores done.

The most recent participation and activity limitation survey took place between November 2006 and February 2007.

[Andrew Kavchak]

From:
http://en.epochtimes.com/n2/canada/parents-lobby-swing-autism-fight-4717.html

Parents Lobby Swing Ridings in Autism Fight

By Joan Delaney

Epoch Times Staff Sep 24, 2008

Jack Witt, 4, working with an Applied Behavioural Analysis therapist. Parents of children with autism want the Canada Health Act amended so that costly ABA treatment can be covered by Medicare. (Louise Witt)

Parents of children with autism have been fighting over a decade to have costly treatment covered by Medicare. Now they are using strategic election lobbying in swing ridings to further their cause.

Activist group Medicare for Autism Now has launched a campaign called “The Two Percent Solution” in 14 swing ridings across the country where candidates won by two per cent or less. They are backing any candidate who publicly supports legislation to amend the Canada Health Act to include autism treatment.

Among the 14 constituencies is Parry Sound-Muskoka where federal Health Minister Tony Clement won by a mere 21 votes. Because these ridings are vulnerable, says the group, their initiative has a good chance of success.

“What we want to do is get some federal leadership on the issue of autism. No party has stepped up to the plate so we’ve got this non-partisan initiative going on in the upcoming federal election,” says Louise Witt, a parent activist and Surrey, B.C., campaign coordinator with the group.

Witt’s 4-year-old son, Jack, was diagnosed with the developmental disability when he was two. That’s when Witt became active.

“I didn’t have a political bone in my body until I realized the discrimination that children with autism were faced with in this country,” she says, calling these children “the orphans of the health care system.”

The group, along with Families for Early Autism Treatment (FEAT), has been calling on Ottawa to work with the provinces to set a national standard for autism treatment and amend the Canada Health Act so that an intensive treatment called Applied Behaviour Analysis (ABA) can be covered by Medicare.

“It’s expensive, and politicians talk a lot about that but they certainly don’t talk about how expensive in might be to treat a child who has cancer or diabetes, for example. So I don’t understand why it is acceptable to put a price tag on treatment for children with autism.”

ABA includes one-on-one time with trained professionals and is most effective when implemented between the ages of two and five. It has been shown to have a dramatic effect on children with autism, and Witt’s son is no exception.

“He never spoke, not a single word, until he went in ABA treatment and he spoke his very first word on his very first day of therapy. I knew right then that this was a powerful kind of treatment. He now talks in sentences, he wants to socialize with children, he can tell me what his wishes are, if he’s hungry or if he’s hurt, and if I didn’t see such amazing results I wouldn’t feel as passionate about this.”

However, the treatment can cost up to $60,000 a year, and there lies the rub — the provinces say it’s too expensive.

“It’s expensive, and politicians talk a lot about that but they certainly don’t talk about how expensive in might be to treat a child who has cancer or diabetes, for example. So I don’t understand why it is acceptable to put a price tag on treatment for children with autism,” Witt says.

Currently, a patchwork of autism services are provided through social services ministries across the country, with some, like B.C. and Alberta, paying a portion of ABA costs.

But it’s not enough, say parents, some of whom have more than one child with autism and have been crippled by debt as they struggle to provide what they believe is the best treatment for their children.

There have been several lawsuits in various provinces over the years in an effort to resolve the issue. In the landmark Auten case in British Columbia, the court declared that Early Intensive Behavioural Therapy or ABA is a “medically necessary” service and must be funded by the government.

However the province appealed, and the Supreme Court of Canada overturned that judgement in 2004.

While Health Minister Clement was not available for an interview for this story, the Ministry of Health has stated that the issue must be addressed by the provinces and territories since it’s their responsibility to deliver health care.

But after children with autism become non-coping adults who must be institutionalized, it’s the Ministry of Health that foots the bill. FEAT and others say it’s inconsistent that the ministry not be responsible for funding early treatment that can help these children before they become a drain on the system.

Liberal Senator Jim Munson, who supports a national strategy for autism treatment, was part of a Senate committee that produced a report earlier this year called “Pay Now or Pay Later: Autism Families in Crisis.” However, the report never went before Parliament for a vote.

Munson says it’s time politicians began “thinking outside the box” because families of children with autism are in crisis.

“The stress is so much on families that couples are splitting up, families are borrowing money that they can’t afford and mortgaging their homes to provide their children with treatment, and from my perspective as a Senator I find that tragic.”

Beverley Sharpe, a volunteer with Medicare for Autism Now, is keenly aware of what Munson means.

Soon after her child, Allison, was diagnosed with autism when she was almost three, Sharpe’s husband walked out. After doing extensive research, Sharpe was convinced that ABA was the only therapy that could help her daughter.

In order to meet the “huge bills” that started pouring in after she began the ABA treatment, Sharpe opened a line of credit, worked overtime, cashed in her RSPs, pawned anything of value and slept on her living room floor so that she could rent out her bedroom.

It all paid off, and Allison, now 14 and a grade 9 student, is able to look after herself and “has blossomed into a lovely member of the household.”

A litigant in the Auten case, Sharpe says two studies accepted by the court showed that it costs $1.1 million to pay for the long term care of untreated autistic individuals — 10 times the amount it costs to provide ABA treatment. A recent federal government study found that autism, which is on the rise, costs the economy about $1 billion a year.

“It’s a pretty lonely existence being an untreated autistic person and institutionalization is not a dignified existence. We do not have a society where we write people off for any disability except if you’re autistic,” says Sharpe.

But this issue is not peculiar to just Canada. According to FEAT’s website, parents in many countries are suing their local, state/provincial or federal governments to make ABA accessible to their children through public funding.

In the U.S., where most of the legal battles — and gains — have occurred, presidential hopefuls John McCain and Barack Obama have both said they support the Combating Autism Act which was unanimously passed and has almost $1 billion dollars going toward treatment and research.

In Canada, a private member’s bill tabled by NDP MP Shawn Murphy proposing amending the Health Act to ensure government funding for ABA was supported by both the Liberals and the NDP. But the Conservatives and the Bloc Quebecois voted it down.

However, Harold Doherty, whose son, Conor, suffers from autism, says the fact that so many MPs supported the bill bodes well for the future in advocating for the measures proposed by Murphy.

Thanks to the efforts of Doherty and other parents, New Brunswick now has funding for 20 hours per week of ABA treatment and provides training for autism support workers and teacher assistants. But without ABA being covered by Medicare, says Doherty, there’s always the risk that these hard-won gains could be lost at any time.

“We need serious commitments of funding for autism treatment across Canada and that’s what we’re not getting.”

For more information on the Two Percent Solution campaign, visit http://www.medicareforautismnow.org

Last Updated
Sep 24, 2008

[Andrew Kavchak]

Well, well. Clement won't discuss a National Autism Strategy, but he would consider a National Drug Plan…if the provinces would work with the feds (and there's money in the system!).
________________________
Clement open to drug plan but sees other options

Updated Tue. Sep. 23 2008 10:09 AM ET

CTV.ca News

Conservative Health Minister Tony Clement says he's open to creating a catastrophic-illness drug plan such as the one promised by the Liberals and the New Democrats, but a brand new initiative isn't the only solution.

Speaking to CTV's Canada AM on Tuesday, Clement said there is already money in the health care system that could go towards prescription drugs if the provinces and feds could work together on the issue.

"What I've said to my provincial counterparts is I'm willing to go forward with a new initiative, but there's money in the system now," Clement said from Huntsville, Ont.

"If we work together to do bulk purchasing of pharmaceutical products, if we work together to reduce our generic drug costs — because our costs are 25 to 30 per cent higher than they have in the U.S — then we can find the money to put to new, innovative drugs or drugs for rare diseases."

Clement also suggested the Liberals and NDP would simply throw money at the issue rather than coming up with a real solution.

Both of the Conservatives' primary opponents have promised to provide funding for Canadians dealing with the costs of catastrophic illness or disease.

Liberal pledge

Liberal Leader Stephane Dion promised $900 million over four years to create a new plan.
Calling it "one of the most fundamental policies a government can provide to its citizens," Dion said the proposal would cover the costs of drugs for serious illnesses such as cancer, diabetes, and arthritis.

"In the Canada we want, Canadians battling a serious illness should not be forced to sell their house to buy the prescription medicines they need — not in our Canada. Never," Dion said when he made the campaign promise.

New Democrat promise

New Democrat Leader Jack Layton's drug proposal would cover 50 per cent of catastrophic drug costs for seniors and families facing illness, above $1,500 per year per person.

"The goal of this plan is to provide Canadians with a safety net so that they won't be bankrupted by prescription drug costs," Layton said in a news release.

"It will give every Canadian — wherever they live, whatever they earn or have saved — a basic guarantee and a basic level of help and financial security."

[Andrew Kavchak]

Hi Folks,
Thank you for posting the update with the responses from some of the candidates so far. But with some you have to wonder. For example, one says that they would support amending the legislation to include treatment under Medicare (that's what we want), as well as diagnosis and prevention (diagnosis is already covered by Medicare, although you may wait a hell of a long time to see a specialist as we did at the Children's Hospital of Eastern Ontario in the nation's capital). This prevention thing is interesting. It reminds me of the notice I recently saw that former Playboy Playmate Jen McCarthy is writing a book about the prevention of autism. How is it possible to write about the prevention of autism if we still don't know the cause? Similarly, how can Medicare provide for the prevention of autism if we don't know the cause? Nonetheless, I am impressed by the candidate's commitment to this issue and hope that if they are elected they will table a Private Members' Bill making autism illegal. That should solve the problem.

On a more serious note, the Bonnie Brown reply is disturbing. She was the former Chairperson of the Standing House Committee on Health. A former Cabinet Minister, Judy Sgro, suggested to me one day that Ms. Brown is "really good" and that I should write to her asking her to put autism on the Committee agenda. This goes back a few years, but my recollection is that many months later I received a letter from her simply confirming that autism is NOT on the Committee's agenda. It really makes you wonder why some folks get involved in one Committee or another, or one Ministry or another. We know tht Clement is not particularly concerned about the health of Canadians, certainly not Canadians with autism, so why is he the national Minister of Health? It can't just be that pension thing…

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