[FEAT BC Admin]

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

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

 

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

-Hi everyone!

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

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

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

Sabrina

 

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

1. Establish a Paper Trail

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

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

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

Why?

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

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

2. Submit all Requests in Writing

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

3. Set Deadlines for Action

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

Why Set Deadlines?

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

How to icci?

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

Who to icci to?

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

Why send a icci copy?

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

What is the sequence of letters?

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

TOP

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

BOTTOM

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

Documentation from Experts:

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

When to hire a lawyer?

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

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

How to hire a lawyer?

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

Topic

[Super Dad]

http://www.cnw.ca/en/releases/archive/April2009/02/c6055.html

New autism advocacy group launches

Parent-run initiative focused on making main autism therapy more accessible

TORONTO, April 2 /CNW/ – Today, on World Autism Awareness Day, hundreds of parents of children with autism in Ontario are uniting to combat government discrimination against their children and to make autism therapy more accessible.

"My son has been waiting for a year and a half to receive government-subsidized therapy, and we have another one to two years to go. Hundreds of other children in this province are in the same boat. Instead of helping our children make key gains in their early years, the government has abandoned them. We've had enough. We're going to expose this injustice and fight for our children's rights," says Sharon Aschaiek, founder of Autism Resolution Ontario (ARO), and mother of Jaiden, 3, who has autism.

At 9:30 a.m. at the Queen's Park media studio (room No.148, main floor) in Toronto, the parents of ARO will present their plans to launch an ongoing, province-wide, high-profile public awareness campaign to alert the public about how the provincial government is neglecting and violating the civil rights of children with autism, and to achieve greater access to ABA therapy.

ABA, or Applied Behavior Analysis, is a teaching style that uses rewards and repetition to teach individuals with autism communication, socialization and other life skills. The approach relies on systematic observation and data collection to measure results. With more than 30 years of research showing its effectiveness, ABA is the most scientifically proven autism intervention.

ABA works best during children's early preschool years, and those who receive it intensively – 30 to 40 hours a week of one-on-one instruction – can make great strides in catching up to their typically developing peers.

The Ontario government has a provincially funded program in place to provide children with autism this therapy. However, children must wait three to four years, or longer, to access it; as a result, they lose out on the opportunity to maximize their early years, and many regress in their symptoms. Currently, about 1,400 children in Ontario are waiting for subsidized autism treatment or eligibility assessments. Many parents pursue private ABA, but its high price – about $50,000 a year – puts it out of reach for most families. Still, Aschaiek says, many parents go into serious debt trying to pay for private ABA.

"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. "Our son's early years are going to waste. He is suffering, and there's nothing we can do about it."

In addition to advocating for more timely therapy, ARO (http://www.autismresolutionontario.com) is also pushing for more fairness, efficiency and transparency in the way ABA is administered in Ontario. Once children finally receive ABA, Aschaiek says, they're under constant threat of having it terminated. Currently, she says, the government does not consult with children's therapists, nor review data on their progress with ABA, when deciding whether to cut off therapy.

Another ARO goal is to make ABA more accessible in schools. Currently, Aschaiek says, kids with autism may receive some special education services or ABA-style support, but true, individualized ABA isn't available, even though it's widely understood to be the best, and often only, way to help them learn. Autism is a brain development disorder that impairs communication and social interaction and causes repetitive, non-functional, and sometimes aggressive, behaviour. Currently, one in every 150 children is diagnosed autism – that's up from one in 10,000 kids 30 years ago.

This dramatic spike in the number of cases, Aschaiek says, is why the government should act now to prevent all these children from becoming dysfunctional, social services-dependent adults.

"Children with autism who receive insufficient ABA go on to cost taxpayers millions of dollars more in lifetime care," Aschaiek says. "The most cost-effective approach is to help these children now, so that they can become independent, contributing adults."

[Super Dad]

http://www.medbroadcast.com/channel_health_news_details.asp?news_id=17653

Autistic Hamilton girl wins right to continue treatment, for now

Apr. 02, 2009

Provided by: The Canadian Press
Written by: THE CANADIAN PRESS

TORONTO – A six-year-old autistic girl in Hamilton won the right to continue receiving treatment for her condition on a temporary basis Thursday, a day after her father asked the Ontario government to keep both his twin daughters on the program.

Paul Ceretti said he was happy to hear his daughter Delanie will continue to receive IBI, or Intensive Behavioural Intervention treatment, until the courts make a permanent decision in her case.

"They're still cutting her off – they're just maintaining the status quo for now," said Ceretti, who still plans to fight to keep Delanie on the program long-term. "It's just a Band-Aid."

The Ontario government had decided to cut off Delanie's treatment while allowing her twin sister Mackenzie to stay on the program – a move critics said was arbitrary and intended to reduce wait lists.

The government didn't provide any reason for reversing its decision, and declined to comment further.

Children and Youth Services Minister Deb Matthews has denied using arbitrary guidelines to disqualify children from autism treatment, and said those decisions are in the hands of experts.

But Ceretti argues he was told Delanie had been taken off the program because she wasn't learning fast enough – even though her caregivers and psychologist disagree.

The Ontario Autism Coalition has expressed concern that other children will be thrown off the program through rigid and arbitrary benchmarks.

NDP Leader Andrea Horwath, who had raised Delanie's case in the legislature Thursday, which was World Autism Day, said she would continue to lobby for the family.

"Dalton McGuinty promised that all Ontario children would have access to IBI therapy regardless of their age," Horwath said.

"We will do everything we can to ensure Delanie has this vital therapy restored permanently."

New Democrats said for the period ending Dec. 31, there were 1,419 youngsters waiting for treatment and another 377 waiting to be assessed.

[Andrew Kavchak]

Hi Folks,

And yesterday in the Senate, our champion Senator Jim Munson has once again spoken up for us. Go Senator Go!!!

________
Senate
Hansard
April 2, 2009.

World Autism Awareness Day

Hon. Jim Munson: Honourable senators, today is World Autism Awareness Day, a day recognized by 192 members of the United Nations.

A number of senators joined us in the West Block yesterday as we brought groups working on behalf of autistic people together with parliamentarians and their staff, and it was a good day. These groups had been working separately, but now they are united as the Canadian ASD Alliance. Our goal yesterday was to raise awareness and create links between decision makers and the people working hard every day on behalf of people with autism.

Today, the Minister of Health announced that Canada recognizes World Autism Awareness Day. That is an important step and I am happy she took it; but there is no force of law behind this declaration.

My bill, S-210, now before the Standing Senate Committee on Social Affairs, Science and Technology, which has been endorsed by Senators Keon and Oliver, includes in its preamble two very important points. First, it states that Canada has no national strategy for autism; and, second, it reminds us that Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities.

These elements of the bill, so important to the groups who were with us yesterday, are fundamental to improving the lives of people with autism in Canada. Without a national strategy, efforts to address this disorder will remain disparate and ad hoc. Without recognizing the rights of people with autism, we fail to show them respect.

As I have already said here, recognizing April 2 as World Autism Awareness Day will not cure autism. It will not guarantee that children who need treatment, those who wait far too long for care and therapy, will get what they need. It will not provide financial assistance to families who are breaking the bank to pay for these treatments themselves.

I hope that honourable senators will continue to support my bill by making S-210 law. We are expressing compassion, caring and respect. We are saying to people with autism, "We will take action and we want to include you." This shows what Canadian values are.

[Andrew Kavchak]

Hi Folks,

Well, this morning the website of Parliament has the transcripts of what was said in the House of Commons, but the transripts of what was said in the Senate is not yet available.

So yesterday there were a total of two MPs who made statements, and one Conservative question to a Conservative junior Minister (who happens to have a child on the spectrum).

Does anyone ask "what happened to the implementation of the Andy Scott Motion for a National Autism Strategy?" and "what are you waiting for to implement it?". Nope.

Does anyone ask the government why they have a multitude of strategies for health problems that are already covered by Medicare, but refuse to develop and implement a meaningful national strategy for autism and get Canada out of the stone ages and into the 21rst century? Nope.

Instead, the Liberal MP talks of "compassion, inclusion, hope". Hope for what? A new government that is more compassionate maybe?

And more of Mike Lake again. Thanking families for their selfless commitment to their loved ones.

And then a question in Question Period! One Conservative setting the Conservative junior minister up with a question about how great the government is.

Even though this government recently replied to Senator Munson's question about setting up a branch in the Public Health Agency of Canada or Health Canada to focus on ASD by stating that it will do no such thing, Colin Carrie had the audacity to say that this government recognizes "that autism is an important health and social issue". And he thanks Mike Lake. For what exactly? Being the cover and poster MP for federal inaction with respect to a national autism strategy that would help our kids get access to treatment under Medicare, and perhaps for the photo ops with his son?

If Mike Lake has done anything for autism since his writing and distributing a disgraceful open letter explaining his reasons for voting against a National Autism Strategy bill several years ago, it does not appear that he has bothered to put anything about it on his own website. Proof of inaction? So what is Colin Carrie talking about?

____________________
House of Commons
Hansard
Thursday, April 2, 2009 (World Autism Awareness Day)

Statements by Members

World Autism Awareness Day
Mrs. Bonnie Crombie (Mississauga—Streetsville, Lib.):
Mr. Speaker, today is World Autism Awareness Day, one of only three official disease-specific United Nations days. On this day, autism advocacy groups around the world are calling on their governments to take measures to raise awareness about autism, and to encourage early diagnosis and intervention.
As many of us are, I am proudly wearing the blue puzzle piece, the signature mark of Autism Speaks Canada, which symbolizes the three messages central to the autism community: compassion, inclusion and hope.
One in every 150 children is diagnosed with an autism spectrum disorder, which makes it more prevalent than childhood cancer, diabetes and AIDS combined.
Canadian researchers are playing lead roles in many global research initiatives to help find the missing pieces of the autism puzzle. In the absence of a cure, early detection, diagnosis and interventions are key to successful outcomes.
I am proud that our Liberal leader has committed to Autism Speaks Canada in a letter, and I quote:
The Liberal Party strongly supports the initiative to develop a national strategy for autism to help provide better coordination of federal assistance and for continued research.
I encourage every–
The Speaker:
The hon. member for Brome—Missisquoi.

_________________________
World Autism Awareness Day
Mr. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):
Mr. Speaker, today is World Autism Awareness Day. It is also now 11 years since my son Jaden was diagnosed with autism. So how can I in just one minute explain what it is like to deal with autism?
Jaden is now 13 and it has been a very difficult year for him. He is still an amazing kid, with an impact on people that I can only dream I will one day have. However, 13 years is a difficult time for any kid. It has been a particularly difficult time for Jaden, who is completely non-verbal. Jaden has an intense desire to be needed, to please anyone he comes into contact with, but this, combined with his difficulty communicating, has led to a paralyzing anxiety at times.
He is often unsure whether yes really means yes, and a no can cause a stream of literally unexplainable tears that are heartbreaking for all of us.
Families across the country deal with autism and issues like this every day. On this single day, we honour them for the selfless commitment they make to their loved ones every day of the year.
______________________________
Oral Questions

Autism
Mrs. Joy Smith (Kildonan—St. Paul, CPC):
Mr. Speaker, autism is an important issue that presents challenges for many Canadian families. This Conservative government has done more for this issue than any other federal government has by funding a chair of autism research at Simon Fraser University and funding autism research through the Canadian Institutes of Health Research.
Will the Parliamentary Secretary to the Minister of Health please tell the House what other measures our government is taking to address this important issue?

Mr. Colin Carrie (Parliamentary Secretary to the Minister of Health, CPC):
Mr. Speaker, I would like to thank the hon. member for her question and I would like to thank the member for Edmonton—Mill Woods—Beaumont for his hard work and commitment to autism advocacy.
Our government recognizes that autism is an important health and social issue that presents challenges for many Canadian families. I am pleased to inform the House that our government has declared April 2 as Autism Awareness Day in Canada. Better knowledge about autism is essential to family service providers and policy makers. I can assure the House that our government is showing leadership by focusing our attention on building the autism evidence base so that future action by our partners will be well informed.
I strongly believe that through our contributions and by working with our partners, we can enhance Canada's capacity—
The Speaker:
Order, please. It being Thursday, I believe the hon. member for Notre-Dame-de-Grâce—Lachine has a question.

[Andrew Kavchak]

Hi Folks,

Well, it is World Autism Awareness Day.

While one group is having a news conference in Toronto to outline the truly tragic circumstances that some families face and the apathy of those in a position to do something (see the article below), the federal government announced that it endorsed WAAD (see press release below).

The press release even quotes Mike Lake as suggesting that "It is important that Canadians realize both the challenges faced by families dealing with autism…" Could one of these chanllenges be politicians who don't do anything to help?

Various groups have got some things up on their websites about what they are doing today. The Autism Society of Canada (ASC) posted a message that it is joining with its "CASDA" Alliance members to "celebrate" WAAD. What's a "CASDA"? What is there to celebrate? Has the ASC actually achieved anything this year that has had a tangible impact on the lives of our kids?

Another organization that seems to be engaging in some activity today is the Autism Speaks Canada group (also with they acronym ASC). This is the organization that pushed for the Combating Autism Act in the U.S., but when their Canadian leader was asked by the Senate Committee looking into funding for autism treatment two years as to whether she supported an amendment to the Canada Health Act to include autism treatment in Medicare, her reply was "no". Why? What were her reasons? Because it would get bogged down in Parliament.

Anyway, it appears that Autism Speaks and Mike Lake are teaming up these days. Yesterday they were at a reception on the Hill. According to the Autism Speaks Canada website, it was to: " provide information on autism and request all-party support for the development of a comprehensive National Autism Strategy".

Well, how did that go? How can you ask for such a "comprehensive" strategy with an MP who has so far thwarted the effort and written a letter explaining why Shawn Murphy's bill (which would have resulted in the creation of a national autism strategy), was "bad law" and why he voted against it. Is there not some contradiction here? Is there not some hypocrisy? How credible is the effort? Who takes it seriously?

If that was not enough, Mike Lake had his son, along with the son of a Autism Speaks Canada board member, standing outside the doors to the House of Commons today handing out the autism puzzle piece pins to MPs as they entered the House.

Imagine being an MP and telling Canadians that the feds can't do anything meaningful to help Canadians with autism get access to treatment, and then using your own non-verbal son to distribute pins outside the House of Commons on WAAD. What is the point? On one hand he tells the MPs not to do anything because it is not their business ("we can't do anything as it is provincial!"), and on the other hand when the UN had declared a WAAD, suddenly he gets his son into a publicity stunt. Is it shameless behaviour?

The Autism Speaks Canada website also has some letters received from party leaders. My favourite is the Harper one which commends Autism Speaks Canada for providing a "strong voice". Yeah, the voice that said "no" to autism treatment in Medicare. The one from Ignatieff is funny too. Apparently the Liberals Party supports an initiative to "…provide better coordination of federal assistance…" What federal assistance? Really. I want to know. What federal assistance?

These WAAD days are interesting if for no other reason than to see what kind of creatures see opportunities to come out into the light. There may even be a speech or two in Parliament today.

What a contrast between the events in Toronto and Ottawa (see below). Anyways, I wish the folks in Toronto good luck. They are the real leaders and the strong voice of the autism community on this day.
____________________________

Critics accuse Ont. of inflexible autism benchmarks

Updated: Wed Apr. 01 2009 8:09:32 PM

The Canadian Press

TORONTO — A six-year-old autistic girl is being denied key treatment by the Ontario government in an arbitrary move aimed at reducing wait lists, critics charged after she was taken off the therapy while her twin stayed on.

"Delanie is being denied her basic right to develop to her full potential," said Hamilton resident Paul Ceretti, the father of autistic twins who has just seen treatment cut for one of his two daughters.

"I cannot imagine one of my girls receiving treatment and the other being left behind."

Even though Delanie Ceretti began communicating and learning skills after starting treatment 16 months ago, her family was told this week she wasn't learning fast enough to qualify for IBI, or Intensive Behavioural Intervention treatment.

The Ontario Autism Coalition worries Delanie's case could be an indicator of things to come, and the group is concerned other children will be thrown off the program through rigid and arbitrary benchmarks.

"The provincial government seems bent on kicking kids out of the autism intervention program faster than they're taking them into it," said association spokeswoman Laura Kirby-McIntosh.

McIntosh, who is the mother of a nine-year-old autistic boy, correctly guessed the Liberal government would respond to Ceretti's plea Wednesday by noting there is no longer a cutoff age of six for children with autism to stay in programs, and to point out it has tripled funding since coming into power.

But she argued not all of that money has flowed, and the optics of Delanie's situation "are a little bit creepy."

"Delanie and her twin sister turned six on Sunday," McIntosh said.

"We've now moved to a system of benchmarks, and here we have a six-year-old girl who's been cut off from treatment."

Before receiving treatment, Delanie had no useful communication skills, would hurt herself by banging her head, lashed out at others, and only communicated by grabbing people and crying.

She now uses a picture board and sentence strip to communicate, sits for long periods of time, follows simple instructions and is much less aggressive.

The decision to cut off treatment came with little warning or explanation, and it's a diagnosis Delanie's care providers and psychologist disagree with.

"Delanie has the potential to excel if given the opportunity," Ceretti said.

She "is not slipping though the cracks of the system, she's being shoved through purposefully," said Ceretti, who worries his daughter will regress or injure herself if put in a regular classroom with no support.

Delanie's sister Mackenzie is still in the program, but has recently undergone her own assessment.

As he awaits those results, Ceretti is asking the government to reinstate Delanie's treatment because he believes she needs additional therapy before she can fit into a classroom setting.

Premier Dalton McGuinty said he understands the girls' father wants the best for them, but he stands by the province's decision.

"I just know a little bit about this case, but I know that there was a professional judgment made that one of the daughters was well enough … to go on to the usual academic program, and the other one required continuing special supports," he said.

"I can't really second-guess the professional expertise that went into making those kinds of judgments."

Children and Youth Services Minister Deb Matthews said all benchmarks are still under review, and she denied they are being used to disqualify children, adding the province is working to provide more transparency and consistency to the selection process.

"It's important to understand that with IBI therapy, kids move in and kids move off, and that happens everywhere," Matthews said.

"Decisions, clearly, are being made by clinicians about when it's time to move off. … It's not up to politicians to make those assessments."

_______________________________________

Government of Canada Endorses World Autism Awareness Day

OTTAWA, ONTARIO–(Marketwire – April 2, 2009) – On behalf of the Government of Canada, the Honourable Leona Aglukkaq, Minister of Health, today announced that April 2 will be recognized as World Autism Awareness Day in Canada.

"The Government of Canada is pleased to recognize World Autism Awareness Day and to pay tribute to the many individuals and families in Canada who struggle with the disorder every day," said Minister Aglukkaq. "We join many nations around the globe in marking this day and using it to raise important health and social issues related to autism."

"It is important that Canadians realize both the challenges faced by families dealing with autism and the incredible uniqueness and creativity of individuals diagnosed with this mysterious disorder," said Mike Lake, Member of Parliament for Edmonton – Mill Woods – Beaumont. "Being better informed will contribute to better decision-making and a greater understanding of how to interact with people who have autism, in ways that enrich all of our lives."

Autism spectrum disorders (ASD) affect approximately one in 150 children in Canada. It is a complex and lifelong condition with a broad spectrum of symptoms that can range from mild to very severe. In all cases, ASD affects a growing child's behaviour, social interaction abilities, and communication skills.

Research continues to look for a better understanding of the causes of ASD and the most effective treatments and interventions. The federal government recognizes that such information is essential for families of affected Canadians and therefore contributes to this important work.

For example, in October 2007, Health Canada approved $1 million over five years to support a National Chair in Autism Research and Intervention at Simon Fraser University. Since 2000, the Canadian Institutes for Health Research have also provided $21.5 million to research effective treatments and, ultimately, cures for autism. We are confident that these efforts and other initiatives will enhance our knowledge and understanding of this condition.
_____________________

[Jemma Lee]

Hello everyone,

Did you all have a nice Autism Awareness Day?

Yes, yes, I know "World Autism Awareness Day" is not until tomorrow.

But to us parents of autistic children, EVERY day is Autism Awareness Day. That means today, yesterday, and any other day.

What we really need is an "Autism POLITICAL Awareness Day."

We need all families of autistic children to realize that Mike Lake (and the rest of government) is not their friend. We need all Canadians to understand that their children will one day be burdened with a country full of untreated autistics. We need everyone to know that anyone can become disabled when they get old, but our inferior nation does not have adequate legislation to protect the disabled. We must all become aware that the defeat of autism advocacy means the defeat of Canadian society.

Jemma

[Michelle Weis]

Hi there!

I am out of the loop as it has been 5 years since I have moved to NY. I have recently heard about the Monarch House and was wondering if anyone has any information about it? If so can you email me?

geminisky@roadrunner.com

[Andrew Kavchak]

Hi Folks,

Well, there was a gathering in the West Block on Parliament Hill today in the lead up to the big day tomorrow. A notice had been sent to all MPs, Senators, and their assistants, which read as follows….
_________________

Attention all Members of Parliament, Senators, and Assistants

Come celebrate World Autism Awareness Day
April 1, 2009
3:00-5:00 pm.
200 West Block

Senator Jim Munson, with Members of Parliament Peter Stoffer, Glenn Thibeautl, Mike Lake, Shawn Murphy and Luc Malo, invite you to come learn more about Autism Spectrum Disorders (ASD).

You will have the opportunity to meet members of the steering committee of the Canadian ASD Alliance. They represent seven organizations working in the areas of advocacy, awareness, education, service delivery, and research.

Drop in for coffee, tea, and cookies…along with a good dose of awareness!

R.S.V.P.
…..
___________________________

Well, I have always been particularly grateful to Senator Jim Munson and MP Peter Stoffer. Both are our champions on Parliament Hill.

Shawn Murphy is a special case. Although he tabled a Bill for a National Autism Strategy that was voted on and defeated, I got the impression he never really understood the issues or the background. When I met him on the street in Ottawa after the failure of his Bill he told me that the next step for public policy development in the area would have to come from the courts. When I told him that the SCC had already rejected the matter and referred it to the legislatures, he then corrected himself and said that he meant "human rights tribunals" type of courts. Sure Shawn… You've obviously thought this one through…

I don't know who Glenn Thibeault and Luc Malo are, but I heard there were some new MPs who are eager to get involved in this file. Perhaps it is them. Good luck to them. However, if they are starting by participating in autism events that headline Mike Lake, then they are not going to go far.

Amazing, eh? A father of a kid with autism in the House of Commons who writes a letter for use by all Tories to explain the BS arguments of why he and the government MPs were voting against Shawn Murphy's Bill, but they both then appear on the banner to invite MPs to an autism "celebration".

And what are they celebrating? What have they done to help the autism community that is worthy of celebration? Someone please tell me.

As far as I can tell, not only has Mike Lake not done anything at the federal level to actually help our kids get access to treatment, he generates and disseminates government excuses for inaction and lack of leadership. How does it rub on his conscience that the Tories could run in an election on a platform of creating a National Cancer Strategy, and then refuse to actually create a National Autism Strategy (notwithstanding their own voting in favour of the non-binding motion of Andy Scott's)?

And what is this "Canadian ASD Alliance"? Who are their members? And what are their messages? What has that Alliance's goals and activities been and what have they accomplished? If it was to convince the government to set up a directorate in the Public Health Agency of Canada to monitor ASD, the government recently answered "NO" in the Senate to a question from Senator Munson. Is that what they are celebrating?

Cookies. Celebration and cookies. With Mike Lake.

In the U.S. even the worst President in the history of the U.S. signed the Combating Autism Act and committed the U.S. government to spend US$1 billion on research, detection, treatment, etc.

And in Canada? Celebration and cookies with Mike Lake.

I received an invitation but did not go. I would rather see them arrange for some autistic kids to be there and ask the MPs who show up to spend an hour with a kid who has autism. Just one hour. With no help from anyone. That would really raise some meaningful awareness. Not the cookies and milk kind.

[Andrew Kavchak]

Hi Folks,

Well, the second annual World Autism Awareness Day is coming up fast…are you ready for all the bulls**t that will likely come from Ottawa?

As you may know, Senator Munson recently tabled a Bill to have the government declare an annual autism awareness day. Well, could it be that the bill is unacceptable to the government in its current form? What could the problem be? Ot is it problems?

Perhaps a reference to the 1 in 166 prevalence rate? Well, gee, that's what the CDC said years ago before it said that the prevalence rate was 1 in 150! Perhaps the bill should specifically refer to the CDC since the Canadian health authorities have no idea what the prevalence rate is. Is that the only problem? Probably not. What about the reference to the fact that there is no national strategy to deal with the autism epidemic, or phenomenon, or whatever you want to call it? Perhaps the government does not like that the strategy thing be discussed. Oh sure, we can have a strategy or heart health, spinal cord rehab, aids, cancer, etc….but just not autism. That would be impossible, right? Why exactly? No one seems to be able to give a straight answer apart from saying "it's provincial".

Rumour has it that there will be at least two press conferences in Ottawa over the next two days to discuss autism. Might one be a plea for a bill to be passed? Might another be by the Autism Speaks organization? And what about Mike Lake? What's he doing to try to pretend this week that he is doing something for autism while really not doing anything. Could it be that he apparently is attempting to contact a loose network of autism activists who are seeking to hold a press conference and is trying to invite them to a meeting, but that there is at least one activist that he does not want to come to the meeting? And what is the purpose of the meeting that he wishes to have? After not doing anything for autism all year, why this sudden meeting? Oh, I know, I know. He walked at the Autism Speaks walk in Edmonton last year or something. Sorry, I guess he did do "a lot" for autism.

This all reminds me of a situation a few years ago when the day before a rally on the Hill to mark the anniversary of the Auton decision the Health Minister had a press conference and announced a five-point plan (you remember, the one with the website). Well, none of the rally organizers were invited to the press conference, however, there were three people on the stage behind the Minister during the press conference from the autism community. The leader of the ASC, and two people from the Ottawa English and French chapters of the Autism Society of Ontario. I gather that the lady from the French chapter had been invited to participate but had not been informed about the provisions of the announcement until it was a "fait accompli". Well, well….played like a fiddle. And then the Minister could say that he consulted and had the support of the "autism community".

What goes on over the next two days behind closed doors and at the podium in Ottawa may be interesting…

However, on a separate and possibly positive note, a google news search on "autism" today will reveal a press release of a new organization in Ontario that will hold a press conference at the Ontario legislature to announce a new initiative to get access to ABA treatment. Might a new generation of parents whose kids were just introduced to the joy of waiting lists be starting a new round of parental activism? Stay tuned.

[Jemma Lee]

Re: Canucks Autism Network Rally

This looked interesting until I got to the part about Linda Reid. This person has done a great deal of harm to our children, so her presence really adds insult to injury.

I have not read anything about the Canucks Autism Network having ties to the government. I wonder if this is just a lack of awareness about the history of the autism war in this province.

I thought one of the Aquilini families (owners of the Canucks) was an Auton litigant? Does anyone know some Canucks Autism Network insiders who can shed some light on this?

Jemma

~~~~~~~~~~~~~~~~~~~~~~

From: "Canucks Autism Network"
Date: March 30, 2009 12:52:18 PM PDT (CA)

The United Nations General Assembly has proclaimed April 2nd as World Autism Awareness Day to highlight the plight of the estimated 67 million people world-wide who live with the effects of autism. To recognize this important event, the Canucks Autism Network (CAN) is organizing an awareness rally beginning at 7:30am on the North Plaza of the Vancouver Art Gallery. The march will loop around the Art Gallery block and then head towards GM Place for 8:15am, where coffee and hot chocolate will be served. The Honorable Linda Reid, Minister of State for Childcare will be on hand to proclaim April as Autism Awareness Month in British Columbia. We anticipate that the event will wrap up no later than 8:30am.

CAN’s goal for this event is to have 100 representatives – we challenge you to meet this 100 person target. Please, help pass the word to anyone who might like to participate and help raise awareness for this important cause.

Should you require further information, please feel free to contact me. I look forward to seeing all of you on April 2nd.

Jodi Simkin
Executive Director
Canucks Autism Network
http://www.canucksautism.ca

[Author]

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