[Andrew Kavchak]

Hi Folks,

Update from Ottawa,

First, CNN.com and other sites are reporting the latest study from the US CDC. The latest prevalence rate is now 1 in 100.

Further, Senator Munson's Bill regarding Autism Awareness Day will apparently be up for debate at second reading in the House of Commons this coming Friday, October 9, 2009. As you know, some MPs are against the Bill because it contains too many "whereas" clauses that rub some in high places the wrong way. Hopefully the community will take advantage of this opportunity to tell their MPs how they feel about this Bill, etc…

[Andrew Kavchak]

From yesterday's Hansards for the Senate and the House of Commons:

Thursday, October 1, 2009.

Senate:

Senator's Statements

Autism Awareness Month

Hon. Jim Munson: Honourable senators, today is October 1, and October is Autism Awareness Month. Many of you know how important this cause is to me.

I was saddened to see a story in the media only yesterday of a father in Edmonton who was so overburdened with the care of his autistic son — so stressed — that he killed his son and then took his own life. This tragic story tells us much about the painful isolation autism creates.

Autism, as we all know, is a baffling disorder. What causes it, how to treat it and how to cure it are mysteries we still must solve.

Our own Senate report, Pay Now or Pay Later: Autism Families in Crisis, speaks to the urgent need for funding for research and for families to afford treatment for their children. Too many families in this country are facing the tremendous challenge of this disorder on their own. I have met several of them.

There is Suzanne, the courageous grandmother who is raising funds to provide services for children even before they have a diagnosis. There is Josh, as we know, the devoted big brother who raises funds to help his little sister with autism. There are many other people I have had the honour to meet and the pleasure to work with. As this month unfolds, I ask honourable senators to remember that too many Canadians are facing autism on their own. We must show support and provide funding to help prevent terrible tragedies such as the one that took place in Edmonton.

Too many families are stressed and at the breaking point from the burden of dealing with autism without sufficient support. We can and must do better.

I ask honourable senators to remember these people and do what they can to break down the wall of autism and reach out to end their isolation and help create a better, more inclusive Canada.
_________________________

House of Commons:

Statements By Members

Mental Health Strategy

Ms. Judy Wasylycia-Leis (Winnipeg North, NDP):

Madam Speaker, on the eve of Mental Health Awareness Week let us agree that nothing short of a national mental health strategy is required.

The report, “Out of the Shadows At Last”, and the establishment of the Mental Health Commission of Canada under the direction of Senator Kirby have given mental health issues a national focus. Now it is time to turn this focus into a national policy, a federally funded program, working hand-in-glove with our provincial and territorial governments and our first nations, Inuit and Métis partners.

Now is the time for a national housing strategy that my colleague from Vancouver East initiated and was passed by the House yesterday, a strategy to overcome barriers that force people living with mental illness into deplorable housing situations or out of housing altogether.

Now is the time to implement Roy Romanow's recommendation to have mental health case management, intervention services, and coverage for medication management included in the scope of medically necessary services under the Canada Health Act.

For the 20% of Canadians who experience mental health illnesses over their lifetime, and aboriginal youth who are six times more likely to commit suicide, and on the occasion of the 25th anniversary of the Canada Health Act, that is the least we can do.
______________________________

[Andrew Kavchak]

Hmmm…I wonder if that is Mike Lake's riding?

[Andrew Kavchak]

Just a follow up today to the message I posted yesterday about how some people think everything is just fine…
_____________

From: Canada.com

Lack of autism help led to murder-suicide

News Services September 30, 2009

A father who murdered his autistic son, then killed himself, was overburdened for years because the boy had fallen through programming gaps and the family had been unable to get the help it needed, a family friend said Tuesday.

"This horrible thing that's happened is the result of an accumulation of stress because of the lack of resources. That's the way the mother sees it," said Karen Phillips, program director for the Autism Society of Edmonton Area.

The father, 39, and his 11-year-old son were found dead by police in their north Edmonton home Sunday afternoon.

© Copyright (c) Canwest News Service

[Andrew Kavchak]

Hi Folks,

Some of you may remember that back in November, 2006, a number of leaders of the FEAT BC organization, headed up by Jean Lewis, travelled to Ottawa for a few days of lobbying and agitation. Oh, what fun it was! Just before our protest demonstration on Parliament Hill we found out that the Health Minister, at the time it was Tony Clement, held a press conference and announced a five point plan to deal with autism. This was unprecedented. The Minister subsequently stated that we don't need a national autism strategy since we have this five point plan.

At the time Clement's office called the Autism Society of Canada and the local Ottawa Chapter of the Provincial Autism Society and had their representatives standing on the podium beside Clement. Did they realize they were being used like fiddles to sing the praises of government "action on autism"?

I subsequently heard that the local Ottawa representative from the Francophone autism community fell for the invitation without knowing what was going to be announced and she subsequently regretted it. But what about the ASC President who was there and giving the impression that she endorsed the five point plan?

Well, here we are three years later. And just what is the result of this five point plan? On the first day that Parliament resumed sitting after their summer break, a number of questions on the Order Paper were replied to. See below and judge for yourself. We had a symposium. We have a chair in BC. The Public Health Agency of Canada did a survey and now will consider getting data about contaminants in the environment and Attention Deficit Hyperactivity Disorder. We have a website (oh boy!). We have a bureaucratic "branch" or something at Health Canada that has "the lead" on the ASD file (i.e. is responsible for writing memos to the Minister about how they have "the lead" on writing Memos to the Minister). And finally, some crumbs of financial assistance are being given to some "centre" somewhere for something.

So,…. does anyone share the former Health Minister's thought that we don't need a National Autism Strategy because we have his five point autism action plan? This would actually be funny if it was not so disgusting and tragic.

Colin Carrie, the Parliamentary Secretary for Health (or some other title of the month) stated earlier this year in response to a question from Shawn Murphy that this Conservative government has done more for autism than any other government. So little, but so proud.
_______________________________

House of Commons
Hansard
Monday, September 14, 2009

Questions on the Order Paper

Question No. 337–

Hon. Shawn Murphy:

With regard to the November 2006 funding announcement made by then-Health Minister Tony Clement detailing a five-point plan for autism spectrum disorder (ASD) funding in Canada, what are the details regarding:

(a) the status of the commitment to sponsor an ASD stakeholder symposium;

(b) the status of the commitment to establish a chair focusing on interventions and treatment for ASD;

(c) the status of the commitment to undertake a consultation process to see how an ASD surveillance program could be set up through the Public Health Agency of Canada;

(d) the status of the commitment to establish a dedicated web page on the Health Canada website with ASD information and resources;

(e) the status of the commitment to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal health portfolio level; and

(f) how much federal funding these and other autism programs will receive during the fiscal year 2009-2010?

Hon. Leona Aglukkaq (Minister of Health, CPC):

Mr. Speaker, in response to (a), with regard to the commitment to sponsor an ASD stakeholder symposium, in November 2007, a national symposium on autism research was hosted by Canadian Institutes of Health Research, CIHR, to share knowledge and to support dialogue on future research priorities. The report from this Symposium is now available on the CIHR web site.

In response to (b), with regard to the commitment to establish a chair focusing on interventions and treatment for ASD, funding for an autism research chair to address issues related to treatments and interventions was announced at Simon Fraser University on October 20, 2007. This joint initiative with the Government of British Columbia is being supported with $1M in federal funding over five years. Efforts to establish a Chair are currently underway by Simon Fraser University.

In response to (c), between November 2007 and May 2008, the Public Health Agency of Canada, PHAC, undertook a consultation process to examine options for the development of an Autism Spectrum Disorders, ASD, surveillance program in Canada. This process was guided by a steering committee comprised of ASD experts, and included three components:

1. an environmental scan of the current scope of ASD surveillance activities in Canada;

2. a technical workshop on the information needs and data collection options for ASD surveillance; and

3. a broader stakeholder consultation on the information needs of ASD communities and how they would like surveillance information disseminated to them.

The results of this consultation process will be used by PHAC as it undertakes a new national surveillance system for developmental disorders such as autism. This initiative, a component of the federal government’s 2008 action plan to protect human health from environmental contaminants, will be a national sentinel surveillance program to track and assess the linkages between environmental contamination and developmental disorders such as sensory impairments, autism spectrum disorders and attention deficit hyperactivity disorder. Using centres for surveillance expertise, data will be collected from a variety of local sources such as schools, hospitals, community paediatricians, and other health professionals.

In response to (d), with respect to the commitment to establish a dedicated web page on the Health Canada website with ASD information and resources, the website has been created. It provides facts and information on ASD, as well as links to Canadian and International autism organizations. The website can be found at: http://www.hc-sc.gc.ca/hc-ps/dc-ma/autism-eng.php As well, in 2007-08 Health Canada provided $50,000 to the Offord Centre for Child Studies (a research centre dedicated to improving the life quality of children with mental health and developmental problems) to support the dissemination of the latest evidence pertaining to autism through the Canadian Autism Intervention Research Network, CAIRN, via the Network’s website. The Canadian Autism Intervention Network, CAIRN, is a group of parents, clinicians and scientists working to conduct research in early intervention in autism, and is part of the Offord Centre for Child Studies. The web page on the Health Canada website links to the CAIRN website in order to direct Canadians to evidence-based information of a more clinical nature, and complement the content on the Departmental site.

In response to (e), with respect to the commitment to designate the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal health portfolio level, this was done in 2007. Since then, the Health Policy Branch has become the Strategic Policy Branch, and the Chronic and Continuing Care Division within the Branch holds the lead on the ASD file.

In response to (f), with respect to federal funding for autism related initiatives during fiscal year 2009-10, the federal government has committed $200,000 to Simon Fraser University, as part of the $1M over five years for the Autism Research Chair. In addition, the federal government has a multi-year contribution agreement with the Offord Centre for Child Studies, with $25,000 in 2008-2009 and $50,000 in 2009-10, for a total of $75,000 over two years. This funding will support the development and dissemination of research priorities in Autism Spectrum Disorders, ASD, among parents, policy makers, researchers, health professionals, health educators and individuals with ASD. This work will be accomplished through a national on-line survey, a national conference in fall 2009, and by further updating the Canadian Autism Intervention Research Network website, which is the primary bilingual source for disseminating evidence-based information about ASD in Canada. In fiscal year 2009-10, CIHR has currently committed approximately $3.4 million towards autism research.

[Andrew Kavchak]

The Toronto Star

Queen's Park protester wants government funds to help her autistic boy

August 18, 2009

Tanya Talaga

Queen's Park Bureau

For the past 22 days, single mom Maria Bunda has protested outside the front doors of the provincial Legislature with a sign fixed atop her backpack that reads: "6 years old, severely autistic boy, denied therapy, denied a chance."

Bunda, 47, silently paces back and forth in sweltering heat. She is there daily and vows to keep coming back until someone explains and reverses the decision to cut off provincial funding for her son Sebastian's intensive behavioural intervention (IBI) therapy.

"He desperately needs it," Bunda said. "I will be here as long as it takes, as long as I can."

There are 1,513 autistic children waiting for provincially funded IBI treatment and another 389 waiting for assessments throughout the province. As young children languish on wait lists, parents feel they have no choice but to pay the steep cost of $60,000 a year for the therapy. The longer children spend waiting, the harder it becomes to help.

Bunda is an oddity to the busloads of tourists visiting Queen's Park. One group from China sent their translator to ask what the problem was. "In Canada, don't they pay for everything in children's health?" the translator asks.

"No they don't," said Bunda, a waitress from Hamilton who spends the little free time she has standing outside with her sign.

Bunda did receive $5,000 a month from the province to pay for her son's IBI therapy beginning in early 2007, but a decision was made in November to terminate the therapy and funding. Instead, the government will pay for an assistant to accompany Sebastian to a regular school in September.

"The same amount of money the therapy cost is the same amount of money to send him to a school where he will not learn. They will not do the therapy there," said Bunda. Sebastian doesn't speak and is self-injurious. "This is not a matter of money. He needs to learn another way."

Bunda is not the first parent of an autistic child to resort to desperate measures, NDP Leader Andrea Horwath told the Star.

"These parents sell their homes, they liquidate all their assets to buy the services to help their kids," Horwath said.

To have treatment pulled is especially cruel, she added. "This is what is so painful for the parents – they watch the progress and when services are cut off they see them regress."

Horwath blames the Liberals for failing, after six years in office, to come up with a program that works for families and children.

Bunda has written letters to the premier, to provincial ministers and to Prime Minister Stephen Harper, in an effort to figure out why her autistic son and others are denied therapy. "They send me no answers," said Bunda. She posts her emotional daily struggle online at http://www.tooautistic.com.

The government is working to improve services for autistic children, said Kevin Spafford, a spokesperson for Minister of Children and Youth Services Deb Matthews.

"We are looking at broadening the range of supports," Spafford said. That includes setting up transition teams to deal with kids leaving IBI and entering school. Sixteen school boards now have transition teams and more are on the way.

[Andrew Kavchak]

Hi Folks,

After having spent many of my lunch hours in 2004-2006 protesting on Parliament Hill with a sandwichboard sign, I feel a degree of solidarity with any other parent who feels compelled to do the same as a result of the sheer cruelty of government.

Queen's Park is the home of Ontario's government legislature in Toronto. And now there appears to be another mother of a child who was cut off before he even had a chance and who is now protesting and making use of the internet. Please visit her Maryna Bunda's website at:

http://www.tooautistic.com/.

[Andrew Kavchak]

Hi Folks,

A few posts ago (June 23), I posted a message about how the federal government always uses the constitional division of powers argument as an excuse for doing nothing about the lack of autism treatment under Medicare, and how they were pursuing a National Securities Regulator notwithstanding the fact that securities regulation has been a provincial function (I believe under the "property and civil rights" heading in section 92 of the Constitution Act).

Well, here is an interesting update. This week the government of Quebec announced that they will go to court in an attempt to block the federal government's initiative. Obviously the federal department of Finance bureaucrats have been consulting with the provinces since the Minister of Finance announced his intention to pursue this about two budgets ago. During the consultation process Quebec obviously expressed its opposition to this perceived federal intrusion which would diminish Quebec's expertise in the regulation of capital markets and potential weaken its confidence when the next neverendum (oops! I mean referendum) comes around. However, even though a province with as much clout as Quebec is dead set against the initiative, the federal government is still pursuing it. There will likely be a court battle and appeals that will possibly set some precedents. This may take years and go to the Supreme Court of Canada. Who knows?

But the message here is clear: when the feds want something bad enough, they will pursue it, regardless of what the constition, over 140 years of jurisprudence, and the provinces say.

The bottom line is that the federal health ministers (like Tony Clement?), his or her parliamentary secretary (Colin Carrie?), and all the useless "yes men", party hacks, donkeys and sheep (Mike Lake?) who call themselves "Members of Parliament" can just stuff it when they tell us that the feds can't to anything about autism and Medicare because "it's provincial". The double talk and hypocrisy is too obvious.

And speaking of Quebec, below is a touching letter written by the father of a boy who had the misfortune of turning six in Quebec and having minimal assistance cut off…just like Cinderella turning into a pumpkin or something at midnight.

So Quebec will maintain its primitive approach to dealing with autism, but will fight to death over the right to maintain their fingers in the regulation of securities pie. No matter how much they may claim the contrary, the reality is that they are not "distinct" at all, but just as bad if not worse than the other provinces (which do not appear at this time to be opposing the federal national securities approach).
________________________

Help for autistic boy cut off when it's needed the most

Provincial rules dictate no funding for therapy when child hits 6

ANDRE G. BORDELEAU
The Gazette

Thursday, July 09, 2009

(This article was written by André G. Bordeleau, who is David's father.)

My name is David Bordeleau. I am autistic; I am afflicted with PDD-NOS (pervasive developmental disorder – not otherwise specified) sometimes called atypical autism. I was born with this syndrome but my parents weren't aware I was autistic until the director of a daycare I was attending suggested it might explain my behavioural problems. I was 30 months old at the time.

Finding out I was autistic was difficult for my parents. They made a lot of phone calls, consulted a lot of experts and spent a lot of money to give me the many therapies needed to help me catch up with the regular kids my age. Most of all, they were heartbroken when they found out. I am their only child and they felt bad for me. I came in unexpectedly late in their lives; they are now in their early 50s while I am 6 years old. Sometimes I have way too much energy for them.

When I was diagnosed, I barely spoke a few words. My parents first thought it was because Dad communicated with me in French and Mom in English. To help me catch up with the other kids my age, it was decided I would use only one language. My parents chose English because it was easier to learn.

At the last daycare I was in, I had a lot of therapies as well as a shadow. A speech therapist helped me increase my vocabulary. I finally became able to say complete sentences! An occupational therapist helped me with balance and physical activity. This helped me play better and longer with my friends. After a long wait, I finally got into the ABA (applied behaviour analysis) program of the Centre de Réhabilitation de l'Ouest de Montréal (CROM) at a rate of 20 hours a week.

Several ABA therapists have been assigned to me over the years and I loved them all because they were all very nice to me. I could see they really wanted to help me to get better. As of January 2008, another problem arose: I apparently also have ADHD (attention deficit hyperactive disorder).

Something changed drastically at that point: My temper tantrums got worse and I got angry more often. At times, I actually got violent even though this is not something I meant to do. My parents were taken aback by the change; my father even said my whole face has changed since the hyperactivity kicked in.

This made my ABA therapy even more crucial so I could learn to control my frustrations and my irritability. Unfortunately, my ABA therapy stopped May 26, three months after my sixth birthday. This is a provincial regulation and it did not matter whether I still needed the therapy or not. My dad has said repeatedly that the government took away my therapy at a time when I needed it the most.

My parents were getting desperate as the deadline loomed. First, my therapy was reduced from 20 hours to 10 and then my therapist was gone. I miss her terribly. My parents hired someone to come in every Saturday afternoon but they have to pay her out of their own money. My parents say this is expensive and it is hard on them but the therapist is very good for me so they decided to keep my therapy going for as long as possible.

My parents do not blame CROM or its employees; they are only following the rules. Rather, they blame the provincial government. My mom, Deborah Martin, says that in Alberta, kids like me get all the therapies they need until adulthood free of charge, as part of the provincial health-care system. My mom wants to move there, my dad doesn't. This is causing a lot of tension between them.

My parents are now desperately looking for someone to help me. With CROM gone, Mom says I need a therapy coordinator to monitor my progress as well as a therapist to follow up and keep helping me. All of this will be very expensive and my parents don't know where they will find the money. I don't understand this. Why does the Quebec government refuse to help me?

[Andrew Kavchak]

Growing wait for subsidized ABA a violation of children's human rights

TORONTO, June 30 /CNW/ – More than 1,500 children with autism in Ontario
are waiting for years to receive government-funded ABA therapy, and as a
result, they are regressing in their skills and missing out on the chance to
live a normal life, says Sharon Aschaiek of Autism Resolution Ontario.

"ABA has been shown to be most effective in children when they receive it
intensively in their early years, yet in Ontario, children with autism spend
their early years languishing on a waiting list," says Aschaiek, mother of
Jaiden, 3, who has autism, and core member of the parent-run advocacy group,
in response to new waitlist information released by the Ontario NDPs. "By
denying this vital intervention to children with autism in a timely and
sufficient manner, the government is neglecting their basic developmental
needs, and violating their civil rights."

Today, Ontario NDP leader Andrea Horwath issued a public statement with
information on the newest waitlist numbers for the province's publicly funded
autism intervention program. As of March 31, 2009, there were 1,513 children
waiting for treatment – up from 1,063 in December 2008 – and 389 children
waiting for assessments to qualify to receive publicly funded ABA. In total,
more than 1,900 kids with autism are waiting to receive, or waiting to qualify
to receive, government-funded ABA.

"This is an area we know is suffering greatly from lack of government
resources. It's time that this government became a champion of children, not a
champion of waiting lists," said Horwath in her statement about this issue.

"Parents are paying exorbitant amounts out of their pockets to obtain services
in the absence of a good government program."

Indeed, parents of children on the waitlist have no choice but to pay for
expensive private ABA, which costs about $50,000 a year or more. This extreme
cost causes immense financial hardship for parents, and ultimately puts
sufficient therapy out of reach for most children.

"We can only afford a few hours a week of intensive ABA for my son," says
Leah Kalvari, mother of six-year-old Mendy, who has been waiting for three
years for subsidized ABA. "Not only has our son lost his invaluable early
years, but our whole family has suffered tremendously seeing him lose skills."

Also revealed in Horwath's statement was the fact that 102 children also
had their subsidized ABA therapy terminated by the end of the first quarter of
this year. As well, Horwath learned through a Freedom of Information Act
request that a pilot program that was to be developed to bring IBI into
schools still doesn't exist, despite the McGuinty government's claim to the
contrary.

"Both the Ombudsman and the Child Advocate have said there should be more
services for children with special needs, but the McGuinty government is
cutting services instead," Horwath said. "Every child in Ontario has the right
to an education and should receive the supports required to meet their
educational ability."

Raising awareness about and working to change the ABA waitlist situation
is a central objective of ARO, along with addressing the ongoing premature
termination of children's ABA without evidence-based cause, and making
sufficient and customized ABA available to kids in school.

At its launch on April 2, 2009 – World Autism Awareness Day – the
advocacy group issued the government a one-year challenge to live up to its
obligation to address the basic developmental needs of some of its most
vulnerable constituents by making publicly funded ABA more accessible.

Currently, ARO is leading an ongoing, province-wide, high-profile public
awareness campaign to alert the public about the provincial government's
neglect of and discrimination against kids with autism, and to promote
practical and cost-effective solutions to resolving the autism crisis in
Ontario. This fall, ARO is initiating a caravan to meet directly with GTA
families in the autism community and to achieve its goals.

For further information: To learn more about ARO, including the upcoming
caravan, and to get involved in achieving social justice for kids with autism,
contact Sharon Aschaiek at (905) 370-9871 or info@autismresolutionontario.com,
or visit http://www.autismresolutionontario.com.

[Andrew Kavchak]

During the last provincial election we had a demonstration in front of the Premier's constituency office here in Ottawa. His Executive Assistant came out and told me that the Liberal government of Dalton McGuinty was proposing a pilot project for IBI in the schools and he figured that the matter was now resolved.

Well, well… here we are a few years later and what? "…still does not exist…"

Is it really possible that so many would have so little shame?
__________________

From CTV.ca

Autism treatment wait times growing, warns NDP

Updated: Tue Jun. 30 2009 12:14:36 PM

The Canadian Press

TORONTO — Critics say the backlog of autistic children waiting for crucial therapy in Ontario is growing at an alarming rate and in some cases leaving parents to pick up the tab for costly treatment.

NDP Leader Andrea Horwath says as of March 31, there were 1,513 children waiting for treatment — up 450 from December.

She says 389 children were waiting for assessments in that period, while at the end of last year 102 children had their services terminated.

Horwath says that as waiting lists grow, parents are paying out of their own pockets to obtain services such as Intensive Behavioral Intervention, or IBI.

She says a pilot program to bring IBI into schools still does not exist and is calling for regular, public reporting of wait-list numbers.

The government came under fire earlier this year when it was accused by critics of arbitrary cutting off funding to children in need of IBI to reduce wait lists.

It has denied such a move and said it was had been providing therapy for autistic children and working to improve services.

[Author]

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