[Andrew Kavchak]

There will be a webcast of today's hearings of the Standing Senate Committee on Social Affairs. One of the witnesses, Jean Lewis, is scheduled to appear on a panel. I believe her panel will begin at 12 noon Eastern Time (9am in Vancouver), but please don't quote me on the time because the first panel begins at 10:45 Eastern Time and I have no idea how much they may reshuffle the deck or the timing.

Social Affairs, Science and Technology
Thursday, November 23, 2006 10:45 am
Location: Room 2, Victoria Building 140 Wellington Street
(Webcast)
Clerk: Josée Thérien (613) 990-6080

Go to: http://www.parl.gc.ca/common/Committee_SenWebcast.asp?Language=E

[Andrew Kavchak]

House of Commons
EDITED HANSARD • NUMBER 084

CONTENTS

Wednesday, November 22, 2006

ORAL QUESTIONS

Autism

Mr. Blair Wilson (West Vancouver—Sunshine Coast—Sea to Sky Country, Lib.):

Mr. Speaker, it is shameful the heartless minority Conservative government is paying lip service to parents and children affected by autism. Surely the minister does not believe that telling parents to go to a website makes up for the fact that his government has put up no new money for autism research, no new money for program support and no new money for autism development and treatment.

The previous Liberal government invested $16.2 million which supported 32 separate products. Will the Minister of Health stop turning his back on families with autism, put his money where his mouth is, and cough up some new money to support families with autism today?

Hon. Tony Clement (Minister of Health and Minister for the Federal Economic Development Initiative for Northern Ontario, CPC):

Mr. Speaker, we know that this is an important public health issue, which is why I made my announcement yesterday on behalf of the Government of Canada on additional support for families and children facing ASD.

I would only read the headline from the Autism Society of Canada website news release in reply, where the Autism Society of Canada welcomes the announcement from the federal Minister of Health in support of Canadians with autism spectrum disorders.

We are working with the stakeholders. As importantly, we are working with the families and their children, which is quite frankly more than was done by that member's party when in government.

(1500)

[Andrew Kavchak]

Hi Folks,
Well, the press conference in Parliament's Centre Block and the subsequent rally in front of Centre Block were a success. I don't think we could get our "Medicare for Autism Now!" message out any clearer. There were about 100 people at the rally. Jean Lewis, Roxanne Black, Jennifer Black, Peter Stoffer MP, Peter Julian MP, Blair Wilson MP, Andy Scott MP, Shawn Murphy MP, and Senator Jim Munson all spoke to a roaring crowd. There was lots of media. Special thanks to Jean, Jennifer and Roxanne for making it a success. And a very, very special word of thanks to Sam Yassine for helping to organize and coordinate the rally and circulating the petition.

Right afterwards Jean went to do a live Bill Goode radio show and I will be interviewed on Radio-Canada in about 30 minutes by a station in Quebec. Tomorrow: Jean appears before the Senate Committee looking into "Funding for Autism Treatment".

[Andrew Kavchak]

Press Release and Backgrounder issued by the Federal Government today…
____________________

News Release
2006-111
November 21, 2006
For immediate release

Health Minister Tony Clement announces new initiatives on Autism Spectrum Disorders
OTTAWA – The Honourable Tony Clement, Minister of Health, announced today a package of initiatives to improve knowledge and research on Autism Spectrum Disorders (ASD) to help individuals and families facing the challenges of ASD.

"Canada’s New Government recognizes that Autism Spectrum Disorders is an important concern and is committed to working with our partners – provinces, territories and other stakeholders – on this important issue," said Minister Clement.

No one knows what causes ASD. There is evidence that genetics plays a role, but more research is needed to better understand patterns of occurrence of ASD and trends over time.

The federal government already supports research on ASD through the Canadian Institutes of Health Research(CIHR), – which has invested nearly $15 million since 2000 – and knowledge dissemination through the Public Health Agency of Canada's (PHAC) investments in the Centres of Excellence for Children's Well-Being. In addition to those measures, the federal government intends to:

sponsor an ASD stakeholder symposium in 2007 to further the development of ASD knowledge and dissemination among health care professionals, researchers, community groups, teachers, individuals and family members;

begin exploring the establishment of a research chair focusing on effective treatment and intervention for ASD;

launch a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada (PHAC) to help shape appropriate ASD programming and research;

create a dedicated page on the Health Canada Web site to guide the public to ASD information available through the Canadian Health Network and other resources;

designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the Federal Health Portfolio level.
"We are confident that these initiatives will help to better address the many challenges individuals with Autism Spectrum Disorder and their families are facing," said Minister Clement.

Minister Clement is also pleased that the issue of ASD has been referred to the Standing Senate Committee on Social Affairs, Science and Technology to provide advice on how individuals with ASD and their families can best be supported.

-30-

——————————————————————————–

Media Enquiries:
Carole Saindon
Health Canada
(613) 957-1588

Erik Waddell
Office of the Honourable Tony Clement
Federal Minister of Health
(613) 957-0200

Public Enquiries:
(613) 957-2991
1-866 225-0709

BACKGROUNDER

Autism Spectrum Disorder (ASD)
November 2006

Autism Spectrum Disorder (ASD) refers to a group of neurodevelopmental disorders that affect the way the brain functions. For many individuals with ASD, this results in trouble communicating with others or difficulty with regular social interactions. Other signs include a tendency towards repetitive behaviours, and unusual or severely limited activities and interests.

ASD includes autism (also known as autistic disorder), Asperger syndrome and other related conditions. The types of ASD cover a wide variety of symptoms and levels of impairment. ASD develops differently from person to person, and the effects can range from relatively mild to debilitating. Unlike some health conditions, there is no “typical” person with ASD.

No one knows the cause of autism, although there is strong evidence that genetics plays a role. Ongoing research is investigating many possibilities including genetic influences, pre- and post-natal development, environmental factors and immune deficiencies. ASD is not infectious and cannot be caught. And, ASD is not caused by parents’ behaviour or style of parenting.

While we do not have national rates for Canada, it is estimated that ASD may occur in about 1 in 160 children. ASD is four times more common in boys than girls. Signs usually appear during the first two to three years of life and the disorder is often diagnosed before the child reaches school age. Diagnosis involves a number of different measures and screening tools, many based on observation by a team of professionals.

Despite the frequency of ASD, there is much that is unknown about these disorders. More research is needed to better understand the incidence, causes, effective early screening tools, optimal treatments, and hopefully one day, prevention.

[Andrew Kavchak]

Hi Folks,
There is no question that autism is on the radar screen in Ottawa…thanks to FEAT BC! Doing the radio talk show this afternoon with Jean was fun. I got a number of calls from people I have not heard from in a long time to say they heard it. Tomorrow I should be on CBC TV morning news at about 6:15 am. Brenda Deskin may be on CBC TV at about 10am. The press conference and rally are going to be fun tomorrow.

Below is a transcript from yesterday's Hansard that you might find interesting!
Andrew Kavchak
Ottawa
____________________
House of Commons
EDITED HANSARD • NUMBER 082

Monday, November 20, 2006

Statements of Members

Autism

Mr. Russ Hiebert (South Surrey—White Rock—Cloverdale, CPC):

Mr. Speaker, it is my pleasure to rise today to recognize some constituents of mine who have travelled to Ottawa this week to raise awareness about autism spectrum disorder.

Members of the Families for Early Autism Treatment and members of the Autism Society of British Columbia have come to Parliament Hill to meet members of Parliament and inform Canadians about this disorder.

Autism is a neurological disorder that impairs social interaction and communications skills. Despite autism's sometimes serious impacts, there is treatment available to help many of those affected. For example, applied behavioural analysis therapy has proven beneficial for many autistic children.

While funding for this therapy is at the discretion of Canada's provincial governments, our new government is proud of the $1.1 billion increase in the Canada health transfer that we have provided in budget 2006. Our government is also proud to invest $3.5 million annually in research into the causes and treatment of autism.

[Andrew Kavchak]

Studying Autism Isn't Enough
New York Times
Nov 21, 2006
Byline: By Cathryn Garland and Michael O'Hanlon

Section: Editorial Desk; SECTA

Page: 29

Bethesda, Md. — WITH the recent Senate passage of the Combating Autism Act, the House is now poised to approve landmark legislation to help scientists understand the causes and characteristics of autism — a spectrum of neurological disorders affecting more than 1 in 200 children in the United States. If the House does as we hope and passes the act, the National Institutes of Health and related health research agencies will finally begin to devote the magnitude of resources — nearly $200 million a year — commensurate with the severity and prevalence of this terribly devastating set of conditions.

The research emphasis of the act is appropriate, given how little is still known about the causes and the physiology of autism spectrum disorders, as well as the means by which medical treatments can reduce autism's severity if applied early enough. Basic questions like whether the frequency of childhood vaccines today contributes to autism are still unresolved.

As parents of a child facing these challenges, we applaud those lawmakers and fellow parents who have done so much to promote this and other initiatives. But research is not enough. We as a nation must also begin to focus seriously on treating those children who are already afflicted. At present, we are failing miserably to do so.

In America, you have to be lucky or rich to get proper care for your young autistic child. Treatment regimens typically cost more than $50,000 annually for preschool children — one reason proven methods are available to perhaps only 10 percent of afflicted children during those crucial years. In a few states, like New Jersey, educational systems provide therapy to preschool kids, but resources vary from county to county. Here in Maryland, our 4-year-old daughter has received an hour or two of publicly provided help a week; studies show that ideally up to 40 hours of intensive intervention are required. A handful of states, including Maryland, have established a Medicaid autism waiver to allow parents of severely afflicted children to obtain relevant services independent of income.

But limited funds constrain those services even where they exist. Earlier this year, we put our daughter on Maryland's autism waiver waiting list — and were told that she was No. 1,519, corresponding to an expected delay of several years before services would be available.

We are still lucky. Thanks to the farsightedness and generosity of one of our employers, most of the money needed for our daughter is provided via insurance. But among major American corporations, only Microsoft, Home Depot and two or three others offer comparable benefits. Virtually no private health plans do. The Department of Defense has some, though it has been introducing bureaucratic obstacles to obtaining coverage that could make it inaccessible for most as a practical matter.

If we do not help these children, we are essentially condemning them to a lifetime of disability, unemployment and, for many, institutionalization. On human grounds, this is tragic. But it's also bad economics. The few hundred thousand dollars needed to do intensive early intervention for four or five years — while a lot — is only one-tenth the expected cost of supporting someone for a lifetime on the dole.

Intervention is costly because it is essentially one-on-one. Youngsters with autism spectrum disorders are hard to engage. They do not closely observe their environment or naturally imitate the actions of others. Nor do they tend to seek out human interaction and communication. Overcoming these barriers requires a highly individualized and intensive program. There is broad consensus, as reflected in previous studies by the National Academy of Sciences and American Academy of Pediatrics, that early and intensive intervention is critical. The core of most intervention plans, it is generally agreed, should be a cognitive method engaging the child's intellect and emotions and sociability.

Insurance companies and others often deny coverage by arguing that treatment methods are experimental, but that assertion no longer holds water. Studies now show that 40 percent to 50 percent of toddlers undergoing intensive Applied Behavior Analysis, one of the best-known methods, can be mainstreamed in regular classrooms without personal aides by the time they reach school age. (The figure is close to zero for children not given special care.) Most of the other 50 percent to 60 percent make notable progress too. The applied behavior method breaks down learning into simple steps with one-on-one tutoring, in a manner somewhat akin to the way Helen Keller was taught. Other applied behavior approaches involve reinforcing appropriate behaviors in daily life and creating opportunities for social interaction.

In the early 1990s, Dr. Stanley Greenspan developed a competing method. Commonly known as Floortime, it focuses on core autism deficits — emotional, social and imaginative abilities — by harnessing a child's natural interests and tailoring interactions to specific skills and challenges. It involves interactive play, as well as activities that vary a child's environment to teach language concepts in a realistic way.

At a conference last December at the Brookings Institution, Dr. Greenspan, while making a strong case for Floortime, also recognized applied behavior's potential for children on the autism spectrum. As parents using a blend of approaches with our child, we have been encouraged to see that they increasingly draw on one another's insights and activities. (A third cognitive method, called relationship development intervention, also focuses on core autism deficits.) So while vigorous debate continues over optimal therapy, there is no longer any doubt that the main methods work.

Once the Combating Autism Act is passed, and we hold out hope for the next generation, it is time to rescue the children who already are afflicted. Our options range from mandating that insurance companies cover therapies documented to work, to trumpeting the example of places that do provide coverage in the hope others will follow, to expanding autism Medicaid waivers.

The autism community is encouraged by the recent attention to this profound set of disabilities. But as a nation, we have been letting down 25,000 more children every year. Good will is not enough.

Drawing (Drawing by Jordin Isip)

[Andrew Kavchak]

Autism needs hope
Globe & Mail
Nov 21, 2006
MARGARET WENTE

It's hard for the rest of us to imagine what it's like to have a child with autism. Imagine a kid who has the Terrible Twos — forever. A kid who screams for hours, bangs his head and doesn't sleep at night for weeks on end. A child who doesn't speak, is often inconsolable, who bites and hits other kids, and whose diaper you may still be changing when he's 10. "Other parents have no idea how easy they have it," says an autism mother matter-of-factly. "They go out for bagels and they say: 'Do you want to come?' and I say, 'Yes — in another life, I'd love to go out for a bagel.' "

The commitment and devotion of these parents are a marvel to
behold. But their kids are orphans of the system. Publicly funded
treatment programs are limited or non-existent, depending on
where they live. (Only Alberta funds autism treatment up to
age 18.) Many families exhaust their bank accounts and mortgage
their houses to pay for it. "We keep saying that we're just
sending Daniel to Harvard — over and over and over again,"
says one parent.
Autism is a neurological disorder that results in developmental
disability and behaviour problems. Its causes and cures aren't
known, but a type of therapy known as intensive behaviour intervention
seems to work for many kids. Some improve so much that they
lose their diagnosis, and others are rescued from a future spent
in institutions.
"My son is in a mainstream class. He goes to other kids' birthday
parties," says Jean Lewis. She is the mother of an autistic
12-year-old and also a director of a B.C. parents' lobby group.
Where would her son be without treatment? "He wouldn't be living
at home," she says. "Without treatment, kids like this are usually
institutionalized by the time they're adolescents. They're living
in restraints, living in diapers. They have to have their teeth
removed because they bite."
For years, Jean Lewis and other parents have waged their battle
in the courts, on the grounds that their kids deserve equal
access to medical care. "If my son had diabetes instead of autism,
he wouldn't be denied treatment," she argues. A series of lower-
court judges sided with them. But ultimately, they were overruled
by higher courts (including the Supreme Court), which declared
that no matter how compelling their moral case, the issue needed
to be resolved by governments, not judges.
So now, they've gotten political. This week, Ms. Lewis and her
group are taking the fight to Parliament Hill, where they want
MPs to pass a bill that would include autism treatment in medicare.
"No party has come down on the right side of this," she
says.
Autism funding is a giant hot potato. That's because it's expensive,
and no one wants to pay. Autism rates have soared, for unknown
reasons, and the treatment bills can reach $50,000 a year or
more. The feds say it's a provincial matter, and the provinces
say they can't afford it. No province offers autism treatment
as part of medicare. Instead, they shuffle off the job to social
services and education, as if it were a social problem.
When provincial politicians are in opposition, they generally
argue that denying autism treatment is cruelly unfair. But once
they get elected, they change their minds. That's what happened
in Ontario, where Dalton McGuinty promised he would extend funding
to kids older than 6, then wound up fighting the parents he
had promised to help. He won the legal battle, and lost the
moral high ground.
If moral high ground were all it took, this battle would be
over. An overwhelming majority of Canadians approve of publicly
funded treatment for autistic kids. Federal MPs, some of whom
have autistic children of their own, are sympathetic, too. There's
even a private members' motion in the works that will call on
the government to create a National Autism Strategy.
Alas, as Ms. Lewis points out, all this goodwill falls short
of actual help. But even if she gets nowhere this time, she'll
be back. "When you see your child being pulled back from the
abyss," she says, "nothing is going to stop you."
For a glimpse of a day in the life of autism parents, check
out http://www.autismspeaks.org/sponsored
events/autism_every_day.php
mwente@globeandmail.com

[Andrew Kavchak]

Hi Folks,

On June 8, 2004, I was protesting over the lunch hour in front of the Supreme Court of Canada with a sign saying "Kids with Autism need Healthcare not Waiting Lists". I walked up and down the sidewalk and some cops kept looking at me. When I walked towards the steps they even "shoo-ed" me away to a safe distance. But when the court hearings broke for lunch a number of people suddenly came out and I had the pleasure of meeting Sabrina Freeman, Isaac Tamir, and Jean Lewis, among others. We have since become friends and I can't say how much respect I have for them.

It is with lots of excitement that I would like to share with you some information about what is going to be happening in Ottawa in the coming days.

F.E.A.T. of B.C. members, Jean Lewis, Roxanne Black and Jennifer Ralph will be joining Ontario parents at a rally on Parliament Hill on Wednesday, November 22 at 1pm Eastern Time to mark the second anniversary of the Supreme Court of Canada decision in the Auton case.

They're coming to Ottawa, and to quote Jean Lewis from the recent National Post article, "We're coming, but not for a group hug." We will be engaging in some political activities in order to advance our cause of obtaining universally accessible autism treatment under Medicare.

The message will be clear: "Medicare for Autism Now!"….and in place before the next federal election, or parents from B.C., Ontario, the Atlantic provinces, and all places in between will actively campaign for candidates who will commit to amending the Canada Health Act to include autism treatment.

This is a message Ottawa has not heard before…..no focused outrage has created no sense of urgency. That is about to change!

Besides meeting with various MPs, Senators and tentatively with the Minister of Health, we will be meeting with a number of media folks and hope that we will be able to get our message out.

Jean and Andrew will be on the Michael Harris Show on CFRA radio November 21st at 2:00 p.m. eastern time. CFRA is the "all news" radio station in Ottawa. Jean will be on the Bill Good Show live from the rally at Parliament Hill on November 22nd. at 11:00 a.m. PST and 2:00 eastern time. Tune in if you get the chance.

This is a pivotal time for our cause. Political pressure applied at the right time and in the right places will help us get what our children need.

Parents – stay tuned…

[Andrew Kavchak]

SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY

NOTICE OF MEETING

REVISED

Wednesday, November 22, 2006
When the Senate rises but not before 4 p.m.
Room to be determined
Webcast
http://senate-senat.ca/webcast-e.asp

AGENDA
The inquiry on the issue of funding for the treatment of autism.

WITNESSES:

Canadian Autism Intervention Research Network
Dr. Peter Szatmari, Faculty of Health Science, McMaster University

Montreal Children's Hospital
Dr. Eric Fombonne, Director of Child Psychiatry

[Andrew Kavchak]

Action on autism
National Post

Nov 16, 2006

Page: A21
Section: Letters
Edition: National
Byline: Andrew Kavchak

Re: Coming To Grips With Autism, John Ivison, Nov. 14.

While a motion in Parliament to create a "National Autism Strategy" is certainly a step in the right direction, the hesitancy of the federal government to demonstrate leadership and engage in meaningful action is disheartening. Autism prevalence rates have reached epidemic proportions, and the provinces have been negligent in providing autistic children with the urgent treatment that they need to develop to their full potential. My own son waited a year for a diagnosis and another 15 months before getting funding for treatment. This period was critical and will never be recovered.

Federal concerns over provincial jurisdiction are a shameful excuse. How can the government claim that doing something would violate provincial jurisdiction, when just a few weeks ago a multi-million-dollar National Heart Health Strategy was announced?

The government can't have it both ways. The Public Health Agency of Canada does not have one single employee dedicated to the surveillance of the autism epidemic, though the U.S. Centers for Disease Control calls it an "urgent public health issue." How can the federal government develop relevant policies and programs if they have not got a clue what's going on?

Andrew Kavchak, Ottawa.

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