[Andrew Kavchak]

Debates of the Senate (Hansard)
2nd Session, 39th Parliament,
Volume 144, Issue 5
Wednesday, October 24, 2007

Autism Month

Hon. Wilbert J. Keon: Honourable senators, October is Autism Month, a time to raise awareness about Autism Spectrum Disorders. ASDs include five pervasive development disorders, the most commonly known of which are classic autism and Asperger's syndrome. As a spectrum disorder, the symptoms range from mild to severe but generally include difficulty with social skills; communication problems; behavioural issues, such as repetitive movements and restrictive interests; as well as difficulty with audio and visual processing. The ASD rate often cited for Canada is one in 166 and is found about four times more often in boys than in girls. This translates into 48,000 autistic children up to age 19 and 144,000 adults.

These individuals face many difficulties while still children. Those who are able to take part in the regular school stream are often victims of bullying. Combined with other social and academic struggles, it can be hard for them to do well in areas of strength. As adults they have a tendency toward impulsive and addictive behaviour resulting in strained relationships at home and in the workplace.

As honourable senators are aware, the Standing Senate Committee on Social Affairs, Science and Technology recently completed a study on autism entitled Pay Now or Pay Later. We learned how difficult life can be for families whose lives are touched by autism in some way. Senator Munson has devoted a great deal of time to the families of autistic children and has done a great deal during the summer to heighten awareness.

The Government of Canada has been supportive of efforts to overcome ASD in a number of ways with a research chair focusing on the study of treatments and interventions. As well, the Canadian Research Chair Program has 10 chairs working on related research. There is ongoing research through the Canadian Institute for Health Research, CIHR, where $26 million has been spent since 2000. An ASD research symposium was held November 8 to 9, 2007, to provide up-to-date information and a website has been provided to the general public.

Indirectly, a number of programs are also supportive, such as the Pan-Canadian Health Human Resource Strategy and tax measures through the Department of Finance. As well, Human Resources and Social Development Canada has provided supportive efforts through the Social Development Partnerships Program. However, there are tremendous problems with the situation, a number of questions to be answered and a tremendous need for more research.
______________________________________

[Andrew Kavchak]

Debates of the Senate (Hansard)
2nd Session, 39th Parliament,
Volume 144, Issue 2
Wednesday, October 17, 2007

Government Response to Report of Social Affairs, Science and Technology Committee Tabled

Hon. Gerald J. Comeau (Deputy Leader of the Government): Honourable senators, I have the honour to table, pursuant to rule 28(3), the government's response to the twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology tabled on March 1, 2007, during the Senate's previous session.

[Andrew Kavchak]

Hi Folks,

I was thinking some more about the federal Health Minister's statement, particularly the part where he said "…we still do not know what causes autism nor the most effective treatments and interventions."

The irony of it all is that if memory serves correctly, he was the Ontario provincial health minister in the Mike Harris government, which, among all the cutting and slashing that it developed a reputation for, actually created the Preschool Autism Program (now called the Autism Intervention Program) in 1999-2000. After all the hard work of advocates like Norrah Whitney of FEAT of Ontario and Brenda Deskin (whose "Deskin binder" was discussed by the judge in the 211 page decision of the Ontario Superior Court in the Deskin/Wynberg case as being a key document in convincing the Ontario government of the efficacy of IBI/ABA treatment for autism), the Ontario cabinet of which Clement himself was a member, decided that IBI/ABA was not only an effective treatment, and the best treatment for which there was valid evidence and support. Regrettably, he did not pick up the program under his provincial health department, but instead it was assigned to a department of social services.

Now, a few years later, the former Minister provincial minister of health is the federal Minister of Health. And what happened to the evidence that was good enough to warrant spending millions on a new program? Notwithstanding the further accummulation of evidence (e.g. the Sallows study) to demonstrate the efficacy of IBI/ABA, suddenly "…we still do not know what causes autism nor the most effective treatments and interventions".

Struggling for the creation of a National Autism Strategy involves encountering inconsistent and irrational opposition.

[Andrew Kavchak]

From the Health Canada website at:

http://www.hc-sc.gc.ca/ahc-asc/minist/health-sante/messages/2007_10_09_e.html

Please note the link at the bottom of the Minister's message is to another webpage at:
http://www.hc-sc.gc.ca/dc-ma/autism/index_e.html
where autism is listed under "Diseases and Conditions", notwithstanding the torment and convulsions this may cause those who violently oppose autism's characterization as such.

Cheers!
Andrew Kavchak (Ottawa)

________________________

Message from Tony Clement, Minister of Health
Autism Awareness Month, October 2007

October is Autism Awareness Month and this year’s theme is Reaching Your Potential. The aim of this month is to promote dialogue on autism and to increase Canadians' awareness and understanding of the disorder.

Autism Spectrum Disorder (ASD) affects individuals from all walks of life, as well as their families, friends and caregivers. ASD can be defined by certain behaviours which come in combinations and in degrees of intensity that vary in each child and adult. The symptoms often include difficulties with social interaction, communication, and behaviour. International studies suggest that autism affects six out of every 1,000 children.

Though much progress has been made through research, care and education, we still do not know what causes autism nor the most effective treatments and interventions. This is why Canada’s New Government continues to work with partners and stakeholders and invest in activities which support a stronger ASD evidence base to enhance our understanding of this condition.

Autism Awareness Month is coordinated by the Autism Society Canada, a national organization which provides advocacy, public education, information and referral services to individuals with ASD and their families.

Please join me this month in recognizing all those who care for or provide services to those affected by autism. Their dedicated work is benefiting Canadian families from coast to coast.

Tony Clement
Minister of Health
Government of Canada

More information on Autism Spectrum Disorder [there is a link on the webpage to another page, the URL of which is listed at the top of this post.]

[Andrew Kavchak]

Hi Folks,

Just some updates and thoughts about autism and the recent Ontario election…

During the campaign from Labour Day to October 10 autism played a significant part of the political debate. This is in large part due to the efforts of FEAT of Ontario, the Ontario Autism Coalition (OAC), the Alliance for Families with Autism (AFA), the litigation of cases (e.g. Deskin/Wynberg case), and a multitude of autism related high profile stories since the last election. As you may know, during the last election in 2003 then opposition leader Dalton McGuinty sent a letter to a mother named Nancy Morrison saying that the age six cut off for treatment was discriminatory and if elected he would do away with it. Well, of course he did not and instead appealed a court decision which effectively ordered him to do what he had said he would. Since then we have found out that about $59 million of funds previously budgeted for autism were diverted elsewhere and we still don't have IBI in either healthcare or the school system.

During this election the Liberals promised a $10 million pilot project for IBI in the schools; the Conservatives promised $75 million to eliminate the waiting list, an accreditation system for ABA service providers, and IBI in the schools; and the NDP went a little further with $100 million to clear up the waiting lists, accreditation of service providers, and a clear commitment for IBI in the schools.

During the campaign the opposition hammered away at the Liberals on their lousy autism record and included the statement "do you want four more years of the government suing parents of autistic children?" in the Tory TV election ads. Many people during the campaign said they thought of us when they saw these ads and read articles in which the Tory leader, John Tory, accused the Premier of being "cruel" on the autism front.

Nancy Morrison ended up being an NDP candidate, but regrettably lost to the incumbent Tory. I met Mr. Tory myself during the last week of the campaign and he invited me to participate in a rally and a radio program with him to discuss autism issues. I was very grateful, but regrettably, he lost.

Although the Liberals won a second majority, I believe that this election demonstrated that it is possible to not only make autism an election issue, but one of the main issues, as it clearly got so much attention and is hopefully now on the radar screen for a long time. It has to be until our kids get what they need. This won't happen if our community were to sit back and watch. The work continues. Soon the federal government will resume the Parliament circus and we should expect Health Minister Clement to table his government response to the Senate Report's recommendations before Christmas.

Cheers from Ottawa!
Andrew Kavchak

[Andrew Kavchak]

Interesting developments "down under"…A bidding war for autism during an election? Did I read correctly: "There will also be new Medicare items to diagnose and treat children…" Maybe it is time for an international FEAT to be created?

___________________________________________

From: http://www.theage.com.au/

Howard pledges $190m for autism

Annabel Stafford and Carol Nader

October 4, 2007

THE health bidding war continued yesterday as Prime Minister John Howard trumped Labor's pitch for the parental vote with a $190 million plan to help children with autism.
Opposition Leader Kevin Rudd was forced to match the Government policy, which dwarfed the ALP's own pledge to set up at least six autism-specific child-care centres.

"The purpose of being an alternative government is not to oppose everything that Mr Howard puts forward," Mr Rudd said. "Where it's a good policy we would seek to combine it with ours on a bipartisan basis, and when it comes to autism we should take the politics out of it."

Nicole Rogerson — who founded Autism Awareness and set up a centre for autistic children to get intensive behavioural therapy after bringing up an autistic son — declared the Labor plan "incredibly disappointing".

Ms Rogerson — whose Lizard Centre was one of several sites across the country at which the Coalition launched its policy — said advocates had "been up front with the fact that if you've got 30,000 kids in Australia and each of them have got two parents and four grandparents — that's at least six votes a child."

The $190 million, five-year plan will provide up to 200 new autism-specific playgroups for 8000 children as well as intensive one-on-one or small group programs for up to 4000 children with moderate to severe autism. For 1200 severely affected children, the Government will provide up to $20,000 over two years to help pay for intensive behavioural treatment.

There will also be new Medicare items to diagnose and treat children and $46 million for education and support programs for parents and teachers.

Meanwhile, Health Minister Tony Abbott said Victoria's public hospital system was better than those in other states.

As Mr Howard continued his criticism of the NSW Government's management of hospitals, Mr Abbott yesterday said Victorian hospitals "generally operate better" than those in other states partly because they still had boards, a management structure absent in most states. "It's good to see that at least in Victoria we do still have strong hospital boards," he said.

The Howard Government announced this week that, as part of the health funding agreement with the states, the nation's 750 public hospitals must have their own board.

[Andrew Kavchak]

The article below is on the website (see the link) with a very nice picture
of Senator Munson and his colleagues.

http://www.midnorthmonitor.com/webapp/sitepages/content.asp?contentid=708260&catname=Local%20News&classif=News%20Alert

Printed from http://www.midnorthmonitor.com web site Tuesday, October 02, 2007 –
Midnorth Monitor
——————————————————————————–
Senator proposes national autism funding program

by ROSALIND RABY

Tuesday, September 25, 2007 – 17:00

Local News – A well-known Senator is proposing the federal government put a
national funding program in place for autism. Senator Jim Munson told the
Mid-North Monitor that despite health care being a provincial mandate, that
a national program is vital to assist those afflicted with autism and their
families.

Munson is a well-respected Canadian journalist. He also recently served as
the Director of Communications to the Prime Minister. He has had an
extensive career in journalism both in Canada and abroad. He previously
served as a television correspondent for CTV reporting on national events in
the public and political arena. He was CTV's Bureau Chief in Beijing from
1987 to 1992 reporting on events in China such as the Tiananmen Massacre of
June 4, 1989. He also served as Bureau Chief and senior correspondent in
Halifax, Nova Scotia and London, England. He has covered the Iran-Iraq war,
the Gulf war and the Philippines.

Munson has twice been nominated for a Gemini Award in recognition of
excellence in journalism.

Munson was in Espanola and Elliot Lake earlier this month as a guest of
federal Liberal Member of Parliament, Brent St. Denis, to meet with affected
stakeholders, as well as Special Olympians from Elliot Lake. He admitted he
has personal reasons to be involved in both issues.

"My wife, Ginette, and I live in Ottawa with our two sons, but we lost
another son at a very early age," explained Munson. "Timothy was born with
Downs Syndrome and lived less than a year, but he is what motivates me to
work on issues involving children, especially Special Olympians and those
with autism.

"I became actively involved in the fight for autism support when I was
walking on Parliament Hill some two years ago.

There was a lone father, Andrew Kavchak, dressed in suit and tie, protesting
with a placard and begging for support for his child with autism. Here was a
civil servant, a successful individual, spending his time trying to win
support for his and other families affected by the affliction. It broke my
heart. I knew this was a cause worth fighting."

Munson helped the Standing Senate Committee on Social Affairs, Science and
Technology develop a public inquiry and report, Pay Now or Pay Later, that
clearly outlines a strategy to assist autism families. It is the final
result of a two-year enquiry on the funding for the treatment of autism.

"Autism is a crisis in Canada; it's an epidemic," he said. "It is not just a
provincial issue. However, since health is a provincial mandate, there is a
hodgepodge of policies that differ between the provinces. Alberta has an
excellent funding program to help families with autism, but Ontario doesn't.

"The strategy calls on federal Health Minister, Tony Clement, to have all
the stakeholders come together to develop a national strategy on autism,
including his provincial counterparts, develop funding for every province,
to break down the provincial barriers and to come up with a unified plan
that provides fair, equal funding, treatment and services to every person
with autism and their families.

"We have to think outside the box and get on with the job. We have to put a
new system in place. Families are isolated and feel so alone. Some are
breaking up. Some have no choice, but to move so their child can get the
help they need. They should not have to do that. They're crying for help and
we have to answer that call."

The report was released in March of this year. Munson said he would now be
pushing for his fellow senators to keep the issue and the strategy on the
front burner.

"We have to start putting pressure on the federal government to implement
the strategy, to provide targeted funding for autism. That is already in
place with other health needs. For example, the federal government will
provide targeted funding to the provinces for specific pieces of equipment,
such as MRIs. That money must be spent on that equipment. The same can be
applied to autism funding.

"We have to eliminate waiting lists for the programming that will help the
children, put a certified training program in place, create a centre where
autistic families can source funding and information, and provide the
funding so each and every autistic person gets the help they need.

"We have a national strategy for mental health. Why shouldn't there be one
for autism? It is a special need like any other and the federal government,
as well as all provincial governments, has the responsibility to meet those
needs," emphasized Munson.

Munson said he plans to continue travelling across the country to gain
support for the strategy. He encourages the public to write letters to MP
Brent St. Denis and other members of Parliament to ask for the strategy to
be put in place.

"These individuals, the families, need help now. The public can play their
part by supporting the strategy. It only takes a moment of their time to do
so. We have to keep pushing for this," concluded Munson.

[Andrew Kavchak]

Another interesting article about parent power in today's Globe and Mail (Monday, October 1, 2007).

____________________________________

Plight of autistic children resonates in campaign
KAREN HOWLETT

October 1, 2007

TORONTO — When Liberal Leader Dalton McGuinty wrote a letter in September of 2003 to Nancy Morrison, the mother of an autistic son, he had no way of knowing it would come back to haunt him four years later.

Ms. Morrison had asked all three political leaders during the 2003 election campaign for their party's position on funding the cost of therapy after autistic children reach age 6. She told the leaders she would e-mail their responses far and wide.

Mr. McGuinty promised in the letter to end the previous Progressive Conservative government's "unfair and discriminatory" practice of cutting off funding when children turned 6. "These children need – and deserve – our help and support," the letter says.

The problem for Mr. McGuinty is that Ms. Morrison kept her end of the bargain and he didn'••••••• was not until two years after he was in office – when the courts ruled in July of 2005 that the province was violating the children's constitutional rights by denying them treatment – that Mr. McGuinty lived up to his promise.
He has the politically savvy activist to thank for the fact that his letter found its way to families as far away as Europe, Saudi Arabia and New Zealand, thrusting services for autistic children into the spotlight in the current election campaign. The topic has been embraced by both the New Democrats and the Progressive Conservatives.

The rising incidence of autism alone does not explain why the issue has been front and centre – the disease affects one in 165 children. It's also because the campaign has revolved around two issues – Progressive Conservative Leader John Tory's contentious plan to fund faith-based schools and Mr. McGuinty's broken promises. The one involving autism was considered so egregious because it involved vulnerable children.

"A lot of people in our community changed their vote to Liberal because of those promises," said Ms. Morrison, the New Democrat candidate in the riding of York-Simcoe. "This was one of his biggest broken promises."

Mary Anne Chambers, who served as the Liberal Minister of Children and Youth Services, said her party more than tripled annual spending on autism services to $140-million, doubled the number of children receiving intensive behavioural intervention therapy and dramatically reduced the waiting list for assessing children. There are 900 children on the waiting list.

The IBI therapy, a system of behaviour modification to teach autistic children language skills and how to play appropriately, costs an average of $70,000 a year for each child.

But even Ms. Chambers conceded that autism has generated more than its share of interest in the current campaign.

"It's a little bit of an interesting one, to say the least," she said in an interview. "It's one of those things that has a very political character to it."

Mr. McGuinty's letter has been quoted repeatedly by Ms. Morrison and other parents at rallies and at the provincial legislature, who have reminded politicians repeatedly of the emotional and financial toll autism takes on families.

Ms. Morrison said she and her husband have nearly gone broke refinancing their home in Bradford, Ont., to pay for treatment for their eight-year-old son, Sean, who spends mornings at home with his IBI therapist and afternoons in a Grade 4 classroom.

Sean is of average to above-average intelligence, Ms. Morrison said. "We just need to work at getting it out of him."

[Andrew Kavchak]

Another article about the politics of autism in the Ottawa Citizen (there is an election going on in Ontario right now).

http://www.canada.com/ottawacitizen/news/story.html?id=dfe6ae0c-c925-46d0-ae39-bb6d715588c0&k=85706

[Andrew Kavchak]

Soaring rate of autism lends urgency to call for action

By Steve Geissinger

MediaNews Sacramento Bureau
San Jose Mercury News
Article Launched:09/19/2007

SACRAMENTO – Government agencies are facing a new public health crisis – a dramatic increase in autistic children – and must swiftly explore how best to provide better care and protection for them over their lifetimes, a blue-ribbon state commission concluded Tuesday.

The California Legislative Blue Ribbon Commission on Autism said its overall findings included a lack of screening for the disorder, poor public awareness generally, barriers to seeking care for the afflicted, and overlapping efforts between the public and private sectors that need to be better coordinated.

"Throughout the state," the report says, "there is an intense need to plan for and address the impending housing, transportation, employment and educational needs of the tsunami of young people with" autism.

The panel's report recommended the state adopt legislation next year to immediately address such problems.

The panel also concluded that urgent efforts should be made to better educate police and judges so they don't accidentally abuse those with the disorder, which can be characterized by seemingly aggressive behavior.

Senate leader Don Perata, an Oakland Democrat, who authored a bill two years ago forming the 16-member panel, said the report will allow lawmakers "an opportunity to link the science, knowledge and best practices regarding autism to public policy."

The commission's recommendations included:

• Bolstering early identification and intervention.

• Working toward better education of those with the disorder, through the college years.

• Establishing regulations to ensure appropriate and equitable health insurance.

• Creating a statewide public awareness campaign.

The disorder has increased more than 600 percent in recent years, now affecting about one in every 150 children. It is the fastest growing serious developmental disability in the United States.

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