• Archive 3 2000 July 28 - 1:23 pm

• Archive 4 2001 February 14 - 1:47 pm

• Archive 5 2002 June 18 - 12:04 am

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• Archive 9 2006 December 18 - 6:58 pm

• Archive 10 2007 December 18 - 6:58 pm

• Archive 11 2008 December 18 - 6:59 pm

• Archive 12 2009 December 18 - 6:59 pm

Thanks Andrew for the post and info - I just shot off Senator Munson a quick email to thank him for bringing that up in Parliment. Thank you for keeping us updated and informed - I appreciate your effort and your time.

Barbara Rodrigues

Hi Folks,

From the Senate Debates of May 9, 2013...

Autism

Support for Families

Hon. Jim Munson: Honourable senators, last week an Ottawa couple made a heart-wrenching decision after 19 years of intense stress and worry for their autistic son's safety. Amanda Telford and Alex Chiasson decided the time had come to give up the fight. Philippe is non-verbal. He wanders, regularly slipping out of the house only to be found hours later and kilometres from home. He has diabetes, and the inside of his home is fraught with danger. Imagine what it must be like for his parents.

They made a desperate decision. With the sleepless nights and the diminishing of their own health, the full weight fell on their shoulders. Last Wednesday, this couple dropped their son off, perhaps forever, at a developmental services office right here in Ottawa, and the family's private torments become public.

Honourable senators, this is happening all across this country. There are tens of thousands of families struggling to find and pay for care and accommodation for their adult children with autism spectrum and other disorders. The Ottawa Citizen reported that 12,000 families in Ontario alone are currently waiting for some kind of supported living accommodation for their developmental disorders.

Granted, the government has put together a national surveillance program, which is in the early stages, and there is a research chair at York University. However, it is not enough. We need more to be done.

Here in the Senate, as we all know, six years ago, in 2007, we had a report, Pay Now or Pay Later: Autism Families in Crisis. Every autistic family in this country wants a national autism spectrum disorder strategy. We have one for diabetes, for cancer, for mental health and for heart disease. Where is our strategy for ASD? The federal government has yet to invest — and it needs to invest — in our best hope.

We have this option. The report was called Pay Now or Pay Later: Autism Families in Crisis, as I said. The "pay later" time has already come.

The latest news on Philippe is that the Ministry of Health in Ontario has joined social services to devise a solution that meets his distinct needs, but there must be a national solution. Philippe's mother sees the model here as one to be used across the country. In her words, "It's not rocket science.... It should have been available right from the get-go." That really says it all.

Our hearts and thoughts are with Amanda Telford and her husband.

Hi Folks,

And if there ever was any doubt about the federal government's commitment to healthcare for the disabled...well, let the doubt persist...

From:
http://winnipeg.ctvnews.ca/feds-appeal-judgment-ordering-ottawa-to-pay-for-disabled-native-youth-treatment-1.1272984

Feds appeal judgment ordering Ottawa to pay for disabled native youth treatment


By Bruce Cheadle, The Canadian Press
Published Wednesday, May 8, 2013 2:33PM CST
Last Updated Wednesday, May 8, 2013 2:35PM CST

OTTAWA -- The federal government is asking the Supreme Court of Canada to overturn a court ruling that would force it to pay the cost of caring for a severely disabled aboriginal teenager living at home.

The precedent-setting case involves an 18-year-old on the Pictou Landing reserve in Nova Scotia and his principal caregiver, his mother -- who herself suffered a debilitating stroke in 2010.

Last month the Federal Court ruled that Ottawa was wrong to cover only a fraction of the cost of care for Jeremy Meawasige, who suffers from cerebral palsy, autism, spinal curvature and hydrocephalus, a debilitating accumulation of spinal fluid in the brain.

The court found that the government is obliged to uphold "Jordan's Principle" -- a 2005 agreement that First Nations children should get the public assistance they need, regardless of jurisdictional fights between levels of government over who should pay.

The ruling was hailed at the time as a step toward ensuring aboriginal children get equal access to essential government services.

A brief notice of appeal filed by the federal Justice Department says the court erred in its interpretation and application of Jordan's Principle .

Lawyer Paul Champ, who represents Meawasige's mother, Maurina Beadle, and the Pictou Landing band, called the appeal "shameful."

"I understand that the Pictou Landing case is a big precedent, but is it really one they should fight?" Champ said in an email.

"I think it looks terrible for the government to be seen opposing Jordan's Principle and equality for disabled First Nations children."

A departmental spokeswoman for Aboriginal Affairs said the government continues to make the health and safety of First Nations a priority.

"The government of Canada will work with the Pictou Landing First Nation for the reimbursement of home-care costs incurred related to Mr. Meawasige's need, however following careful consideration we have decided to appeal the decision," Genevieve Guibert said in an email.

"Canada is committed to working with the community and the province to ensure appropriate supports are in place for the family moving forward."

Justice Leonard Mandamin found that Ottawa was wrong to cover only $2,200 a month toward Meawasige's care, which costs the Pictou Landing band council about $8,200 a month.

"The only other option for Jeremy would be institutionalization and separation from his mother and his community," said the judgment.
"Jordan's Principle is not to be narrowly interpreted."

Jordan's Principle is named after Jordan River Anderson, a Manitoban who died in hospital in 2005 as governments argued over who should pay for home care services.

The House of Commons unanimously voted in favour of adopting the principle. The Federal Court noted that government departments publicly declared they would respect Jordan's Principle in their policies.

Jean Crowder, the NDP critic for aboriginal affairs, called the government appeal "very disappointing" and said her understanding is that the ruling would impact a relatively small number of severely disabled First Nations youth.
"They should let the ruling stand," Crowder said in an interview.

"The amount of money they're going to spend on the appeal would pay for Jeremy's care many times over."

Jean Lewis and David Marley, directors of Medicare for Autism Now! and
Civil Rights Now! will be on the Simi Sara Show - CKNW 980AM today
from 1:00 to 1:30 discussing Civil Rights Now proposed legislation.
Have a listen and call in.

REMINDER TO ALL WHO USE THIS FEATBC CHAT BOARD.

This is a 100% free, volunteer-run service.

Before you post, please review and understand the rules.

Advertising compensation, hourly rates of pay, is against the rules. This web site is not here to promote competition between families for therapists.

Please contact me personally if you want to discuss this.
bsharpe7@hotmail.com

Beverley Sharpe
Director, FEATBC

TODAY TUNE IN TO 1070 AM on your radio.
5pm-5:30pm The Terry Moore Show.

Jean Lewis and David Marley will be discussing the sad and horrible situation of the Telford case.
The parents who left their 19 yr old severely Autistic /Tourette's Syndrome son on the doorstep of a Social Services Office in Ontario.

Jean and David will discuss this case and the much larger issues around it.

Hi Folks,

Well, here is another sad case which illustrates how dysfunctional our system is...

From: http://www.cbc.ca/news/canada/ottawa/story/2013/05/01/ottawa-autism-son-left-government-services.html

'Exhausted' parents leave autistic son at government office

Amanda Telford says family can't keep 19-year-old safe anymore

CBC News
Posted: May 1, 2013 7:56 AM ET
Last Updated: May 1, 2013 7:50 AM ET
14

Unable to get enough help from social services, an Ottawa family says they had no choice but to leave their son
— who is living with severe developmental delays — in the hands of the government.

Amanda Telford said she brought her 19-year-old son Phillip to a provincial developmental services office on Tuesday and left him there.

“It’s the most heart-wrenching, gut-wrenching feeling in the world to have to do this,” she told CBC News.

“I felt dizzy, nauseous, upset, I’ve spent a very teary-eyed day today; this hasn’t been a very fun thing to have to
do."

Functions at 2-year-old level

Telford said Phillip is living with a severe form of autism that has him functioning at a two-year-old level, Tourette's syndrome and insulin-dependent diabetes.

Amanda Telford says three incidents over the weekend made her realize she can't keep her son Philip safe any longer. (CBC)
He often wanders away and puts himself in danger, she said.

“[A few days ago], he ended up four kilometres away at a restaurant at Ogilvie [Road] and St. Laurent Boulevard,” she said.
”Ogilvy and St. Laurent is an extremely dangerous intersection.”

Phillip also swallowed 14 pills of high-blood pressure medication which required seven hours of hospitalization on Monday, Telford said.
After he got home, his mother, said he wandered away again.

Politicians little help

Telford said she’s asked for help from both provincial and Ottawa city agencies, as well as her local member of Parliament and member of the Ontario legislature.

She said the response has been there’s no room for Phillip in the over-burdened, under-funded social system.

"My husband and I are absolutely exhausted and medically unwell,” she said. “I am not able to do this anymore."

Autism Ontario caseworker Anne Borbey-Schwartz said the Telford’s situation is not unique. There has been a rise in the number of developmentally delayed adults with autism.

"This family is very brave, first of all,” Borbey-Schwartz said.

“(They) represent many families across the province, if not across the country, that are facing aging adults with autism, with a variety of needs, with very little support and very little services."

Telford told CBC Radio's Ottawa Morning host Hallie Cotnam her family has been getting "passport" funding from the province, but it's been frozen for eight years and now only lasts six to eight months of the year.

She said her son is getting medical and social care at a south Ottawa hospice, a place he's been on and off since he was 16 and somewhere she said he's "very happy."

His mother said it's a temporary solution she hopes will lead to a permanent placement.

Please book this date Sunday May 5th at 4pm. It's an honour to have Jean Lewis come out to talk about Civil Rights Now Think Twice Campaign. Civil Rights Now have spent countless months creating a proposal for 2 new laws to protect people living with disabilities. The opportunity to make this happen is now seeing an election is just a few short weeks away.

Jean Lewis your dedication to our children over the years and your continued fight to make things better for all British Columbians. Thanks for all you do as my family has benefited greatly as have many others.

Please rvsp to me Roxanne at bradrox@shaw.ca

Thanks everyone!

Attention: Victoria and surrounding areas, please pass this along to anyone you know living in this area. Also feel free to invite candidates running in this provincial election. It's an opportunity that we cannot pass up on. Time to get these laws passed so we all breath a little easier!! Thanks Jean Lewis for your continued support and for continuing to advocate for our children, you must be SO tired.

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
Think Twice Campaign

• Wednesday, May 8th.
• Burnside Gorge Community Centre
• 471 Cecelia Road, Victoria BC
• 7:00 pm to 9:00 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities and in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Civil Rights Now! Directors, Jean Lewis and David Marley, Parent Advocate Jeanette Poulsen, Parent Advocate Judy Hoffman
• Raffle and Q and A
Due to space restrictions, please RSVP ASAP to
Civilrightsnow@yahoo.ca

EVERYONE WELCOME

How do you get politicians to pay attention?

Learn how on: Saturday, April 20th
1:30 to 4:30 pm
Coal Harbour Community Centre,
480 Broughton St., Vancouver

Civil Rights Now! presents the:

Think Twice Campaign School -

An on-the-job*hands-on*this-is-how-you-do-it*participatory workshop* which will teach you how to effectively present and advocate for the Civil Rights Now! proposal with would-be and seasoned politicians seeking election in the upcoming provincial election….

We believe people learn best by “doing” rather than watching – so – be prepared to participate and receive on-the-job coaching. You’ll have a great time….we promise….

Presenters: Jean Lewis and David Marley, co-founders, Civil Rights Now!

Sign-up today or on-line at civilrightsnow@yahoo.ca or call
604-290-5737

Hi Folks,
I sent the Glib and Mold the following letter...

Dear Editor,

Re: "What Ottawa can do about autism" (April 8, 2013). In his commentary piece, Mr. Picard suggests that the federal Conservative government's use of the argument that healthcare is "a provincial responsibility" as an excuse to do nothing to address the increasing autism prevalence rates is not sincere since this government has already announced a number of national health care strategies, e.g. national cancer strategy.

Mr. Picard could also look beyond healthcare for other examples of incursion into provincial jurisdiction. In the most recent budget the federal government announced that it would forge ahead with the creation of a national securities regulator even though several provinces oppose the idea and the Supreme Court of Canada indicated that the existing division of powers in the constitution does not permit it. Clearly, where there is a will, there is a way.

The most appalling issue regarding the treatment of autism in Canada is that treatment is not covered by Medicare and many families are having to spend fortunes in the private sector to try to help their children. Notwithstanding all the "autism awareness" going on, there is a complete lack of leadership in Ottawa with respect to putting an end to the discrimination and correcting this injustice across the country.

When Mr. Picard asks "what is the hold up?" relating to the development of a National Autism Strategy, it is because there is a greater government preoccupation with attracting easy votes, and such matters as the national regulation of stock prospectuses, than helping those among the weakest and most vulnerable citizens of the country who can't vote (e.g., children with autism). A new "dark age" has descended upon Ottawa with retrograde priorities and values. How long will Canadians put up with this?

Andrew Kavchak

What Ottawa can do about autism

By André Picard

The Globe and Mail

Published Monday, Apr. 08 2013, 2:43 PM EDT

From the outside, the House of Commons is often viewed through the prism of Question Period, with its faux debating and juvenile jeering. But there are quieter moments when Members of Parliament rise and make heartfelt statements and other MPs actually listen. Such was the case when Mike Lake, a backbench Conservative from Edmonton rose recently and said this:

“Mr. Speaker, April 2 is World Autism Awareness Day and 15 years since my son Jaden was diagnosed. As I have shared many times here, life with autism really is an adventure, unique for every family living with it.

“Our world today is one in which our 13-year-old daughter babysits our 17-year-old son, a world in which I often discover my iPad YouTube viewing history filled with Barney episodes and home video clips of airplane takeoffs and landings posted by random strangers from around the globe, a world in which visitors to our home experience odd and memorable moments, like the dinner this past summer when Jaden suddenly decided to guzzle Italian salad dressing straight from the bottle.

“From time to time, when I tell someone Jaden has autism, they will mention Rain Man and ask if he has some kind of special power. The answer, of course, is yes. No matter what someone's mood is, he can bring a moment of complete joy without uttering a single word.

“I have even seen him bring members from all sides of this crazy place together on occasion, and I cannot think of a more special power than that.”

It was a touching statement from a proud dad and MP who works tirelessly to promote autism awareness. The only public official who has done more to promote the cause is Senator Jim Munson, who has been badgering governments, Liberal and Conservative alike, to take autism more seriously for more than a decade.

Mr. Lake’s statement should get all of us asking an important question: What exactly is being done to tackle the epidemic of autism?

Since Stephen Harper took power in 2006, two Senate committees and one House of Commons committee have studied the issue and they have all reached the same conclusion: Canada needs an autism strategy.

What we have gotten instead is: 1) a declaration that April 2 will be World Autism Recognition Day in Canada and 2) a promise to do some surveillance, i.e. figure out how many people in Canada have autism.

Wearing the ribbons – the autism ribbon is a puzzle pattern means to reflect its mystery and complexity – and bathing Parliament and other public buildings in blue light are nice symbolic gestures. But they are no substitute for a strategy.

The numbers we have out of the U.S. are downright frightening. Data released by the U.S. Centers for Disease Control and Prevention suggest that 1 in 50 children aged five to 17 have autism – or, more precisely an autism spectrum disorder. (Autism is not a single condition but the name given to a range of development disabilities that usually involve difficulty with social and communication skills.)

What parents of ASD children know is that getting a diagnosis can be difficult, and getting help can be nearly impossible. In most provinces, the wait for services stretches months, if not years.
A strategy is not a panacea; it won’t make those very real problems disappear overnight. But having a plan is an essential element if there is ever going to be a co-ordinated response.

That’s why Canada has a cancer strategy and a mental health strategy, two of the most important achievements of the Harper government on the healthcare front. While the government believes delivery of healthcare is strictly a provincial responsibility it has at least conceded, through the creation and funding of these strategies, that it has a role in tackling major societal issues that affect all Canadians.

There is no question autism fits the bill.
So what’s the hold up?

Autism groups, like cancer and mental health groups before them, have put aside their differences and presented a united front.
The Canadian Autism Spectrum Disorder Alliance, a coalition of 40 autism groups, has laid out quite clearly what needs to be in a strategy beginning with decent surveillance data; a commitment to stable funding for therapy throughout the country; and a research program to increase scientific understanding of ASD.

They are the same elements found in an excellent Senate report entitled Pay Now or Pay Later which stressed that “governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.”

Parliamentarians have even more “special powers” than Mr. Lake’s son Jaden. They have the power to act on pressing social challenges like autism.
Is there any real excuse for not doing so?

André Picard is The Globe’s health columnist.

apicard@globeandmail.ca

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
Think Twice Campaign

• Wednesday, May 8th.
• Burnside Gorge Community Centre
• 471 Cecelia Road, Victoria BC
• 7:00 pm to 9:00 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities and in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Civil Rights Now! Directors, Jean Lewis and David Marley, Parent Advocate Jeanette Poulsen, Parent Advocate Judy Hoffman
• Raffle and Q and A
Due to space restrictions, please RSVP ASAP to
Civilrightsnow@yahoo.ca

EVERYONE WELCOME

Hi Folks,
If any of you have access to CBC Radio (Ottawa) over the internet, I will be interviewed at 4:45pm (Ottawa time) today. I received a call from a producer yesterday asking if I would like to talk about the "challenges of raising a child with autism". Apparently, they remember me from a few years ago and wanted to do a follow-up story. I can hardly wait to hear what I'm going to say.
Cheers!

Hi Folks,

Well, here we are. World Autism Awareness Day.

So what happens in Canada? Canada AM invites Mike Lake and his son on the program to show that his son Jaden can cook something.

Just a couple of thoughts about Mike Lake's pronouncements...

1) One of the "significant challenges" is that we have a federal government that refuses to show any leadership on the issue (unlike other areas which they consider priorities like the national securities regulator idea).

2) When he says that Canada is doing well compared to other countries, I wish he could have said that to an Ethiopian friend who showed up to one of the rallies that I organized in front of McGuilty's constituency office a few years ago. The gentleman had a six year old son with autism who was on the waiting list for treatment and "aged out" when he turned six. The father was quoted in the local newspaper as saying that we get the same services here for autism as in Ethiopia, except that Ethiopia does not have a government.

3) Two years on a wait list just for a diagnosis is absolutely outrageous and unacceptable in any wealthy and civilized country. How can one acknowledge such gross injustices and then suggest that there is nothing the feds can do about it so it ain't even appropriate to raise the issue with the provinces? What's not diagnosed here is the incredible absence of morality and social conscience.

4) Not as overwhelming as it seems? What Mike Lake forgot to mention is that when his son was diagnosed he worked for the Edmonton Oilers in their marketing department and one professional hockey player immediately cut him a cheque for $10,000 while he was waiting for the provincial services to kick in. He told me so himself. I wonder if that helped ease the shock if he ended up resorting to the private sector for therapy treatment. I remember in the first year following my son's diagnosis that my wife and I spent $40,000. Regrettably, my prayers for a wealthy hockey player to cut me a five-figure cheque never came through.

From:
http://www.ctvnews.ca/health/families-communities-mark-6th-annual-world-autism-awareness-day-1.1220419

CTVNews.ca Staff
Published Tuesday, April 2, 2013 8:39AM EDT
Last Updated Tuesday, April 2, 2013 9:09AM EDT

Fundraising and awareness-raising events are being held across the globe Tuesday, to mark the sixth annual World Autism Awareness Day.

Each year on April 2, autism organizations bring attention to the brain developmental disorder that first shows signs in children between 12 and 18 months of age.

In Canada, the House of Commons passed an act Last November, officially making April 2 "World Autism Awareness Day."

People with Autism Spectrum Disorder often have difficulties with social interaction, verbal and nonverbal communication and show repetitive behaviours. ASD is associated with intellectual disability, difficulties in motor coordination and attention, and other health issues including gastrointestinal and sleep-related problems.
According to the U.S. Center for Disease Control, between one in 50 and one in 88 American children has ASD. Without federal monitoring in Canada, there is no equivalent data for this country. But ASD is considered the most common neurological disorder among Canadian children.

UN Secretary-General Ban Ki-moon said that it is important to bring international attention to the disorder to end stigmatization, lack of awareness and inadequate support structures.

"Now is the time to work for a more inclusive society, highlight the talents of affected people and ensure opportunities for them to realize their potential," he said in a statement.

Edmonton MP Mike Lake told Canada AM that Canada still faces "significant challenges" when it comes to supporting children with autism.

"I think globally we’re doing well compared to other countries, but there are significant challenges. It depends on which province you’re in," he said, noting that the provinces are responsible for providing treatment, education and social services for autistic children.
Lake, whose 17-year-old son Jaden has autism, said families can be on waiting lists to for an autism diagnosis for two years in some provinces, with even longer wait times for services and treatments.

"Certainly we’re getting better, but there are significant challenges from province to province depending on where you live," he said.
Lake said there are promising developments in vocation training, where companies work with autism organizations to discover what an individual with autism is good at and then place them in appropriate careers.

He said Jaden loves anything that has to do with numbers and order, enjoys cooking and has a job at the library.

"So there are lots and lots of opportunities for people with developmental disabilities across the board, not just autism, to really contribute in those types of ways," he said.

Lake advises families who have a child with autism to not lose hope during the initial, early challenges.

"What I would say to new parents who have just had their kids diagnosed for the first time, is that it’s not nearly as overwhelming as it might seem," he said.

To mark World Autism Awareness Day this year, a number of notable landmarks including the Empire State building in the U.S. will be lit up in blue lights as part of the AutismSpeaks "Light it up blue" campaign.

Other landmarks that have been bathed in blue in the past include the pyramids in Egypt and the Opera House in Sydney, Australia. Sporting venues, concert halls, schools and organizations also participate in the event.

Last year, reports released by the National Epidemiologic Database for the Study of Autism in Canada and the U.S. Center for Disease Control and Prevention found that the number of children being diagnosed with autism has increased in at least three Canadian provinces and across the U.S.
While the increase in autism diagnosis is linked in part to wider and improved screening, the CDC warns that doesn’t tell the whole story.

"More people than ever before are being diagnosed with an ASD. It is unclear how much of this increase is due to a broader definition of ASDs and better efforts in diagnosis. However, a true increase in the number of people with an ASD cannot be ruled out," the CDC says on its website. "We believe the increase in ASD diagnosis is likely due to a combination of these factors."

Hi Folks,

Yesterday was one heck of a busy day around here in terms of relevant events. It seems that the federal government has developed and announced another national health-related strategy. This time dealing with prescription drugs.

Take a look at the outline in the press release...

http://www.ccsa.ca/2013%20CCSA%20Documents/CCSA-Prescription-Drug-Strategy-news-release-2013-en.pdf

Among the recommendations' objectives, my favourite one is:

"Develop or clarify legislation and regulations to reduce barriers to effective treatment and
prevent harms". That's interesting. Do you think they are referring to the adoption of a strategy that would involve changing federal AND provincial laws? Does this mean that the federal government will actually take steps to encourage (or "motivate" through other measures) the provincial governments to harmonize anything related to health? I wonder if Mr. Lake is aware of this development. Actually, based on the article below in a previous post, I suppose Mr. Lake is going to be getting credit for his imaginary leadership on this issue too.

From the press release:

Strategy Recommendations

The recommendations were developed around five streams of action: Prevention, Education, Treatment,
Monitoring and Surveillance, and Enforcement. In addition to the five streams, three other areas cut
across all streams and are important to this work: legislation and regulations, research, and evaluation
and performance measurement.*
The recommendations aim to:
• Prevent prescription drug-related harms to individuals, families and communities;
• Educate and empower the public and promote healthy and safe communities;
• Promote appropriate prescribing and dispensing practices among healthcare practitioners;
• Increase timely, equitable access to a range of effective treatment options throughout the
continuum of pain and addictions treatment;
• Identify effective, evidence-informed practices and policies and build upon them;
• Develop a standardized pan-Canadian surveillance system to improve our understanding of the
nature and extent of the harms associated with prescription drugs in Canada;
• Establish prescription monitoring programs in each province and territory to share information
about prescribing and dispensing practices across disciplines and jurisdictions on a timely basis
and take timely action;
• Ensure that law enforcement has adequate tools, training and resources to address the diversion
of prescription drugs;
• Engage industry, governments, regulatory bodies and others with a stake in the issue to join
forces, commit to specific recommendations, leverage existing resources and strengthen system
capacity to address the issue;
• Develop or clarify legislation and regulations to reduce barriers to effective treatment and
prevent harms;
• Conduct research to address knowledge gaps and promote strategies to deal with this important
issue;
• Engage industry in concrete, responsible actions that promote patient safety, improved patient
outcomes and risk mitigation; and
• Provide a contextual lens to First Nations, geographically remote, isolated and rural populations.

Hi Folks,

Three politicians said something about autism in the Senate and House of Commons yesterday...

From the Senate Debates of Wednesday, March 27, 2013:

Visitors in the Gallery

The Hon. the Acting Speaker: Honourable senators, I wish to draw your attention to the presence in the gallery of Ms. Kim Peterson with her son Ryder; and Ms. Heather Rose with her daughter Molly, who are here on the occasion of Autism Awareness Day on the Hill. They are accompanied by supporters and families of children on the autism spectrum. They are the guests of the Honourable Senator Munson.

On behalf of all honourable senators, we welcome you to the Senate of Canada.

Hon. Senators: Hear, hear!

World Autism Awareness Day

Hon. Jim Munson: Honourable senators, I would also like to recognize Suzanne Jacobsen, who is in our gallery. She has single-handedly led an effort here in Ottawa dealing with QuickStart, a program that is very important to all of us and to the autistic children in our city.

Honourable senators, over the past four years I have stood on many occasions to request your support for my private member's bill, An Act respecting World Autism Awareness Day. Next Tuesday, April 2, Canada will for the first time join over 100 countries worldwide in officially celebrating World Autism Awareness Day.

Ten years ago, I began a journey to help improve the lives of people affected by autism. The people I meet by way of my involvement with the autism community are a constant source of learning and motivation.

In the spirit and perspective of our 2007 Senate report, Pay Now or Pay Later: Autism Families in Crisis, we can clearly see the life cycle needs of autism spectrum disorders people. The urgency for people and families is intensifying. A child who was 2 at the time of our report is now 8; a child who was 12 is now an adult, 18. The numbers grow. The need for our leadership and follow-up on the report recommendations is critical.

In Canada, we are just beginning to put together a national surveillance of autism program. Mostly, we still rely on American surveillance findings from the Centers for Disease Control and Prevention to determine Canadian numbers. It is estimated that 1 in 88 Canadian children has an autism spectrum disorder, up from 1 in 110 two years earlier. One in fifty-four boys has ASD.

Our federal government has to take more leadership and responsibility. This is a national issue that cries out for a collective effort of politicians and everyone involved in the autism community.

Though researchers are only now taking initial steps to study autism among First Nations youth, they are already alarmed by what they have uncovered. This issue is a federal responsibility, adding to the push for the Government of Canada to take more action.

While we, as a nation, are always increasing and enhancing services and resources for people with autism, we still have a long, long way to go. For children who are 2 to those entering into adulthood, wait times for diagnosis and treatments are excessively long. An estimated 4,900 Canadian teenagers with autism come of age every year. This number and the implications of growing from a child with autism to an adult with autism are hugely daunting. Once children with autism turn 18, they lose their pediatricians. They lose their eligibility for publicly funded speech and language services and behavioural therapy. At 21, they can no longer attend public school. Only a lucky few live in group homes, attend day programs or even have part-time jobs.

Last October, Parliament passed An Act respecting World Autism Awareness Day, and I am humbled by the respect my colleagues, especially in this chamber, and everyone else on the Hill have paid this simple act to strengthen Canadians' understanding and commitment to helping people with autism. You have contributed to an important milestone and given us a national vehicle for building our capacity to address the autism crisis. On April 2, let us show Canadians living with autism that we respect and admire them and their families and are grateful for their contributions to our society. Let this be an occasion to take stock of what has been accomplished and what we must continue to advocate for. Let us celebrate those progressive Canadian values that guide our efforts.



From the House of Commons Debates for March 27, 2013:

Autism

Hon. Hedy Fry (Vancouver Centre, Lib.):

Mr. Speaker, April 2, 2013, will be the first official World Autism Awareness Day in Canada.

Last October, the House passed Liberal senator Jim Munson's bill to mark the day. In 2007, the United Nations declared April 2 as World Autism Awareness Day in order to bring world attention to autism, which affects tens of millions globally.

Persons with autism have told me of the discrimination they face in society. Many of them function well but are often misunderstood. We must understand the nature of autism in its full spectrum. Those with autism always find it difficult to get jobs. They are seen as mentally challenged, when many of them have extraordinarily high IQs.

Awareness and understanding are key to providing the necessary supports that persons with autism need, so they can, wherever possible, function autonomously in society.

Today will be “Light It Up Blue” when landmarks will be lit up in blue, just as BC Place, Rogers Arena and Science World were last year in Vancouver Centre.

Here is to removing the stigma of autism.



World Autism Awareness Day

Hon. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):

Mr. Speaker, April 2 is World Autism Awareness Day and 15 years since my son Jaden was diagnosed. As I have shared many times here, life with autism really is an adventure, unique for every family living with it.

Our world today is one in which our 13-year-old daughter babysits our 17-year-old son, a world in which I often discover my iPad YouTube viewing history filled with Barney episodes and home video clips of airplane takeoffs and landings posted by random strangers from around the globe, a world in which visitors to our home experience odd and memorable moments, like the dinner this past summer when Jaden suddenly decided to guzzle Italian salad dressing straight from the bottle.

From time to time, when I tell someone Jaden has autism, they will mention Rain Man and ask if he has some kind of special power. The answer, of course, is yes. No matter what someone's mood is, he can bring a moment of complete joy without uttering a single word.

I have even seen him bring members from all sides of this crazy place together on occasion, and I cannot think of a more special power than that.

Hi Folks,

Well, some days I really get the impression we live in an Orwellian world where the meaning of things are inverted and rational thinking becomes impossible for the masses.

Below is a clip from a radio station website about the autism awareness event on the Hill. How can it be that an MP who was so opposed to a Senator's Bill on autism awareness because, among other things, it reflected the then prevalence rate, is now considered to be deserving of credit for his leadership?

And what has he done? Note the reference to everyone else and "top notch" organizations doing things....and what can the feds do? Support research. Yes, of course. That's great. But what about "Medicare for Autism Here and Now!"? Where is that national leadership for a National Autism Strategy that would ensure access to medically-necessary autism treatment pursuant to national standards so that people don't become "autism refugees" as they migrate somewhere else for treatment?

Of course, "That's provincial". Right. Please see my earlier post about the federal notice that they will create a national securities regulator regardless of provincial opposition to the incursion in their jurisdiction. Funny how national standards for the filling of stock prospectuses is more important than national standards for access to, and provision of, autism treatment.

But it is heartwarming to know that Mr. Lake brings his son to Parliament Hill for such events and that he gets all the support that he needs from members of all the parties, including "high fives" all over the place. Now if we could just get that support for every other Canadian with autism...

From:
http://www.cfra.com/?cat=1&nid=90624

World Autism Day to be marked in Canada

Sarah Anderson
Wednesday, March 27, 2013

Next week Canada is officially marking World Autism Day on April 2 and Wednesday on Parliament Hill more than 100 people gathered to spread awareness and understanding of the disorder affecting 1 in 88 children.

Rally organizers credit MP Mike Lake with leading the efforts to officially mark World Autism Day but he explained it's been a multi-party effort, with collaborators within the NDP and Liberal parties as well as his own, the Conservatives.

"One of the real blessings actually of my time here in seven years now in parliament is really how colleagues from all parties have come together in support of Jaden and I really do feel like Jaden's just a part of the family for everybody here, he walks around he gives everybody high fives and it's a big deal to us that we have than environment for him," said Lake of his 17 year-old-son who is on the autism spectrum.

Lake says it's crucial the government continue to support research as groups across the country vie for a national treatment strategy.

"We have some absolutely top-notch organizations across this country working on really, really big issues throughout the lifespan: what happens with treatment when our kids are young, what kind of vocational opportunities there's going to be, what kind of housing opportunities there are going to be when we're gone and our kids are senior citizens," Lake said.

He said those are the things that people across this country are focused on including experts and politicians.

Re: EI issues

Hi,

I'm posting this on behalf of another parent – she was contacted by CRA about EI premium assessment on one of her former BIs who applied for EI benefits in another province. Any advice on how to handle this? Does anyone know an accountant or lawyer who had success in handling these cases?

My email is jptsang@telus.net

Thanks for your help.

Jean

Hi Folks,

Well, yesterday was "Budget Day" here in Ottawa and as the dust settles, one thing caught my eye. Historically, many federal politicians, including Mike Lake, have suggested that the Medicare for Autism Now! issue is entirely a provincial matter, and the most the feds can do is set up an autism website, fund a chair somewhere, etc.

This is of course nonsense, as the Canada Health Act is a federal statute and the feds have negotiated plenty of "health accords" with the provinces, etc.

However, it is most interesting to see politicians squirm and snake their way through various issues and claim that "this is different", when they actually latch onto a cause that is dear to their hearts. For example, the Tories wish to create a national securities regulator and despite the opposition from a number of provinces and the hurdles presented by the Supreme Court of Canada, the feds keep beating the drum and delivered notice yesterday that they won't wait around on the topic. In other words, where there's a will, there's a way. All we are lacking in Ottawa is leadership and champions who are dedicated to the cause. See below...

From:
http://ca.finance.yahoo.com/news/ottawa-seeks-co-operation-prepared-alone-securities-regulator-233804671.html

Ottawa seeks co-operation, but prepared to go it alone on securities regulator

By The Canadian Press

OTTAWA - Finance Minister Jim Flaherty is sending out a notice that he is prepared to go it alone on establishing a national securities regulator if provinces won't agree.

The declaration is contained in a two-page notice in the 2013 budget, informing the provinces that Ottawa still seeks a co-operative approach with the provinces, but it won't wait forever.

"If a timely agreement cannot be reached on a common regulator, the government will propose legislation to carry out its regulatory responsibilities consistent with the decision rendered by the Supreme Court of Canada," the budget states.

The last time Ottawa tried to move ahead with a national regulator, several provinces led by Quebec and Alberta fought to stop it from intruding in provincial authority.

The Supreme Court agreed with the provinces, but left Flaherty an opening by ruling that Ottawa has a role in matters of national importance and scope, including preventing systemic risks in the financial system.

In the budget statement, the government said it was prepared to delegate the administration of its own securities legislation to a national regulator "if a critical mass of provinces and territories were willing to do the same."

But if an "timely agreement" cannot be reached, it would go ahead with legislation dealing with its areas of jurisdiction as defined by the court.
"This will include the capacity to monitor, prevent and respond to systemic risks emerging from capital markets," it said.

"A federal capital markets regulatory framework would be applied consistently on a national basis and would not displace provincial securities commissions, which would still manage the day-to-day regulation of securities activities."

It gives no time limit for an agreement, but in the meantime it is extending the mandate of the Canadian Securities Transition Office to work on the project.

Flaherty has been trying to establish a national regulator almost from the first day he became finance minister, only to be frustrated at every turn by provincial objections and most recently by the courts.

He has pointed out that Canada is the only major industrialized country without a single regulator, increasing costs to businesses seeking to raise money in Canada and making enforcement and prosecution of fraud more difficult.

IMPORTANT ANNOUCEMENT

Civil Rights Now! Board members Jean Lewis and David Marley will be on the Bill Good Show CKNW AM 980 AM on Friday, March 22 at 11:00am to discuss the launch of the Think Twice campaign.

The Bill Good Show can be heard on-line if you go to here and click on LISTEN LIVE in the upper right-hand corner.

On March 22 at 11:00am please call the Open Line at 604-280-9898 or on your mobile at *9898 and tell Bill Good you support the Civil Rights Now! proposal.

It is with regularity that the news is reporting stories about disabled, vulnerable or senior citizens being abused, mistreated, or being crushed under bureaucratic red-tape and government ineptitude. The most recent story is BC Representative for Children and Youth - Mary Ellen Turpel-LaFond's report titled, "Who protected him?" The facts are absolutely shocking and should make all of us, whether disabled or not, to think twice... Read the complete report at www.rcybc.ca

We ask - Why is it acceptable for the police to taser an 11 year old boy with disabilities? Why is it acceptable for disabled people to live in government-funded group homes staffed by completely unskilled and under-qualified staff? Why is it acceptable for disabled people living in "government care" to be locked into "safe-rooms"? Why? Because NO laws exist to protect British Columbians with disabilities. And until they do, the living conditions, healthcare, and standard of care for our disabled family member, or vulnerable parent and, one day each of us, depends solely on the discretion and whim of unelected, powerful bureaucracies.

We need laws...period. Civil Rights Now! has created a proposal to create laws which if enacted will dramatically improve the lives of British Columbians. Now - all of us need to demand that the government do so. Now is the time...the provincial election in on May 14th.

We need everyone - disabled and "temporarily-abled" to join in our "Think Twice" campaign. Come out on March 23rd. Find out what you can do. Please forward this invitation to your networks and ask that they do the same. Also - invite your local MLA and/or candidates seeking to be elected on May 14th to attend.

See www.civilrightsnow.ca to rsvp and for more detailed information on our proposal and campaign.

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
and help us launch the:

Think Twice Campaign

· Saturday, March 23rd.
· Coal Harbour Community Centre
· 480 Broughton St., Vancouver
· 2:30 pm to 4:30 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Jeanette Poulson, parent advocate
· Refreshments, door prizes, Q and A

Due to space restrictions, please RSVP asap to civilrightsnow.ca

Everyone is welcome!

Hi Folks,

This is an interesting article that raises some serious issues that many of us can relate to (or may in due course)...

http://www.thestar.com/news/gta/2013/03/20/family_seeks_crisis_centre_for_autistic_teens.html

Hi there (this is a repost since I forgot to include my email address),

I attended David Taylor's "Taxes and Autism" presentation tonight. I can highly recommend it, the info was invaluable.

But, I had a question that David couldn't answer. I am about to apply for the Disability Certificate for my son. My ex-husband and I are separated and we have 50-50 custody of our son. We are working amicably together to help him. My marital status is now "separated" and he is "common-law" with his new partner. So:

a) which one of us should apply for the certificate? Does it matter?

b) assuming we get the certificate, who should claim the deductions/credits for our son going forward?

My email address is mlbiggsi@gmail.com. Thanks so much!

Melissa

Hi Melissa,
Please post your e-mail address. It might increase responses to your post.

Hi there,

I attended David Taylor's "Taxes and Autism" presentation tonight. I can highly recommend it, the info was invaluable.

But, I had a question that David couldn't answer. I am about to apply for the Disability Certificate for my son. My ex-husband and I are separated and we have 50-50 custody of our son. We are working amicably together to help him. My marital status is now "separated" and he is "common-law" with his new partner. So:

a) which one of us should apply for the certificate? Does it matter?

b) assuming we get the certificate, who should claim the deductions/credits for our son going forward?

Thanks so much!

Melissa

Hi Folks,

OK, so the latest U.S. Government survey says...1 in 50.

http://www.ctvnews.ca/health/u-s-estimates-autism-now-being-diagnosed-in-1-in-50-kids-1.1203041

IMPORTANT ANNOUCEMENT

Civil Rights Now! Board members Jean Lewis and David Marley will be on the Bill Good Show CKNW AM 980 AM on Friday, March 22 at 11:00am to discuss the launch of the Think Twice campaign.

The Bill Good Show can be heard on-line if you go to here and click on LISTEN LIVE in the upper right-hand corner.

On March 22 at 11:00am please call the Open Line at 604-280-9898 or on your mobile at *9898 and tell Bill Good you support the Civil Rights Now! proposal.

It is with regularity that the news is reporting stories about disabled, vulnerable or senior citizens being abused, mistreated, or being crushed under bureaucratic red-tape and government ineptitude. The most recent story is BC Representative for Children and Youth - Mary Ellen Turpel-LaFond's report titled, "Who protected him?" The facts are absolutely shocking and should make all of us, whether disabled or not, to think twice... Read the complete report at www.rcybc.ca

We ask - Why is it acceptable for the police to taser an 11 year old boy with disabilities? Why is it acceptable for disabled people to live in government-funded group homes staffed by completely unskilled and under-qualified staff? Why is it acceptable for disabled people living in "government care" to be locked into "safe-rooms"? Why? Because NO laws exist to protect British Columbians with disabilities. And until they do, the living conditions, healthcare, and standard of care for our disabled family member, or vulnerable parent and, one day each of us, depends solely on the discretion and whim of unelected, powerful bureaucracies.

We need laws...period. Civil Rights Now! has created a proposal to create laws which if enacted will dramatically improve the lives of British Columbians. Now - all of us need to demand that the government do so. Now is the time...the provincial election in on May 14th.

We need everyone - disabled and "temporarily-abled" to join in our "Think Twice" campaign. Come out on March 23rd. Find out what you can do. Please forward this invitation to your networks and ask that they do the same. Also - invite your local MLA and/or candidates seeking to be elected on May 14th to attend.

See www.civilrightsnow.ca to rsvp and for more detailed information on our proposal and campaign.

Do you have a disability? Do you have a family member or friend with a disability? Do you think people with disabilities should have equal protection under the law? Do you want laws created which will actually protect people with disabilities and give them autonomy?

Please join Civil Rights Now!
and help us launch the:

Think Twice Campaign

· Saturday, March 23rd.
· Coal Harbour Community Centre
· 480 Broughton St., Vancouver
· 2:30 pm to 4:30 pm

Come and find out about Civil Rights Now! proposals to create new laws which if enacted will dramatically improve the lives of people with disabilities in BC. Learn how you can participate in making your voice and your vote count in the upcoming provincial election.

Special Guest Speakers will include: Jeanette Poulson, parent advocate
· Refreshments, door prizes, Q and A

Due to space restrictions, please RSVP asap to civilrightsnow.ca

Everyone is welcome!

Hi Folks,

As you know, World Autism Awareness Day is coming up. And Canada has a law, Senator Munson's Bill, that recently made the declaration about it being officially Autism Awareness Day in Canada.

So what does the autism community in Ottawa do? Instead of rallying on the hill with big signs that say "Medicare for Autism Now!" (as we did on several occasions, including the anniversary of the SCC Auton decision several years ago), it seems that something like a stamp collection is being organized, and Mike Lake, one of the historic opponents to Senator Munson's bill on autism awareness, is being given the keynote speaker role along with being characterized as a "champion".

I got this notice (below) by email today. It is a strange twist that the CEO of the local children's hospital would be there. The story is complicated, but my understanding is that in Ontario, the autism treatment program is not covered by Medicare and the department of health, but by another Ministry (they change their name from time to time, but something like "Community services", etc.). That department contracts out the service of ABA provision to regional providers. In Eastern Ontario, the regional provider happens to be the local children's hospital. However, the provision of the treatment is not covered by Medicare, and there are endless waiting lists (I believe that the historic average in Ontario has been over 1,200 for the past decade) and although they claim there is no age cut-off, my family and others know that there certainly is, as they use various techniques to kick kids out of the program.

Ironically, the Canada Health Act and public health insurance coverage for healthcare is supposed to apply to services provided by doctors and hospitals. Even though the local children's hospital is clearly demonstrating that they can provide the medical service (notwithstanding the ages it takes for a diagnosis, the subsequent years it can take to get off the waiting list for treatment, and then the premature ejection from the program, the problems with service standards, etc.), the authorities do not appear to have any interest in extending Medicare coverage to autism treatment.

I was previously happy that Senator Munson's bill was approved because I saw it as a stepping stone and opportunity to put on more pressure and lobby for meaningful action and change. However, the locals appear to be content with letting the champions of the status quo do the talking.

_______________________


Autism on the Hill
World Autism Awareness Day
Wednesday, March 27th, 2013 - Noon to 12:45pm
Parliament Hill

With the signing into law of Senator Jim Munson’s Bill S-206 An Act Respecting World Autism Awareness Day, you are invited to join us on Parliament Hill for an event highlighting this year’s World Autism Awareness Day.

This inaugural public event promotes both awareness of autism and the coming together of community, individuals and government required to make life better for people and families affected by autism. We share the same goal!

Autism ribbons will be handed out at noon. The event will take place from 12:15 to 12:45.

We are honoured to have as our keynote speakers Mr. Mike Lake, MP, and Mr. Alex Munter, CEO of the Children’s Hospital of Eastern Ontario. Senator Jim Munson and Mr. Glenn Thibeault, MP will be standing alongside Mr. Mike Lake, as they are all champions of people with autism and their families.

Please join us to show that by working together we can achieve a better life for people and families affected by autism.

Our banner will feature “The Faces of Autism”, a collection of photos of Canadians on the spectrum. Let’s fill the banner! Please send in your photos to AutismOnTheHill@gmail.com. Follow us on Twitter: @AutismOntheHill #AutismOnTheHill

Autism is a neurological disorder with a rapidly increasing prevalence, currently affecting 1 in 88 children. (CDC)

Many thanks to all who were involved in making government partially re-introduce the direct payment option. Well done, all!

This is a fantastic example of what happens when parents, who are also taxpayers and voters take clear, purposeful, political action.

Keep it up - there's a provincial election on May 14th. Come out to the "Think Twice" campaign launch on Saturday, March 23rd at the Coal Harbour Community Centre in Vancouver. Find out what you can do. www.civilrightsnow.ca

Thanks Roxanne, Debra, Louise, Dione and Dr White and anyone else for fighting for this option for us.

I couldn't access Roxanne's link but here is the announcement from the MCFD site.

http://www2.news.gov.bc.ca/news_releases_2009-2013/2013CFD0003-000483.htm

Note: At the bottom of the bullitin it states that you have to be on the invoice payment method for 2 years before being able to use the direct funding method. That will be a pain in the <>, for the new families just starting out.

"All families must be on the invoice payment system for two years before they are eligible for the direct payment option."

Regards

Joachim

YES!! That is terrific news and the right decision for sure. Many, many thanks to all of you for your commitment to fight for families every step of the way.

Why the age limits is beyond me but it is a foot in that very thick and heavy door.

And yes, Barbara, post 19 is a whole other topic. Thank goodness for the experience and skills we have learned along the way. Sending strength and positive energy to your family.

Way to go Ladies! Thank you for all your hard work and effort. That is wonderful news for parents. Now can I borrow you all to deal with CLBC? ;-)

Barbara Rodrigues

https://wm.shaw.ca/service/home/~/IB_Direct%20Payment_Autism%20Funding_March%2012%202013_FNL.PDF?auth=co&loc=en_US&id=23788&part=2

Announcement today from Minister of MCFD Stephanie Cadieux, we now have the option of Direct Funding back. Unfortunately it's not everything we've been asking for, the Direct Funding will be for children between 12 and 18. You will now have the option to choose if you would like to stay with the current payment option or the direct funding as we had in the past. Also if you have more than one child on the spectrum you can opt for the younger sibling before they reach 12 to be transferred over to the direct option. You will receive the $6,000 in the child's birthday month. You will also have more options as to what you spend your funding on. I will post the formal announcement.

I want to thank a few parents in particular, Debra Antifav who came to our very first meeting with her stack of data showing all the late payments from government. Louise Witt and Dione Costanso, we were each others wing men at almost every meeting pertaining to this issue. Last but not least Dr Sara White who presented all the data on behalf of consultants and of course had parents and children's back at many meeting with government. She was instrumental in convincing government that this was the right thing to do.

We will continue to work on this and hope that all parents can have this option back if they so desire. Thanks to all of you!!!

I also want to thank Minister Cadieux for taking a step in the right direction!

Hi All,

First, I would like to thank very much all FEAT B.C. parents who keep posting their successful stories about what ABA therapy has been doing for their children regardless of if they have just recently started or if they have been doing it for many years. These positive stories are a true encouragement to all parents to continue their hard work with ABA and never give up their fight, the same way that they cannot give up loving their children.
When I say this, I think of not giving up on ABA with our children no matter how severely they can be disabled with their autism, and I thank all parents, relatives, professionals and Canadian citizens who fight to get this medically necessary treatment fully funded by Medicare.

Our children must receive their ABA treatment continuously and intensively as prescribed by a physician and qualified Behavior Consultant. However, all funding our children presently receive under the Ministry of Children and Families is a direct result of parents’ law suits and can be removed with the stroke of a pen.

Our autism population needs to receive their services and treatment from the age of diagnosis through to adult years, but they do not have their medically necessary treatment covered by Medicare. In addition to this injustice, medical treatment for any other condition is not automatically removed due to an age restriction but in a case of autism population we have exactly the opposite. Please take a look at the following example with the latest news of what happens with the teenage and adult population with autism in Ontario:

Ground-breaking adult autism survey reveals mountain of unmet needs:
http://www.thestar.com/news/ontario/2013/02/05/groundbreaking_adult_autism_survey_reveals_mountain_of_unmet_needs.html

This injustice should not happen anywhere, especially not in Canada!
If you are Canadians who care about your loved ones and your neighbours, who love your country and believe in true human values, who would like to stop this terrible injustice to our disabled population and change their lives, please join Civil Rights Now!

Parents, families and friends, please come to the Civil Rights Now! event on March 23rd !!!
www.civilrightsnow.ca

To Les Elton (Lelton)

This is not a forum for your politics. Also, correlation does not imply causality.
-as the authors of the paper (Rey et al. BMJ) cited note:
"Whether the use of cannabis triggers the onset of schizophrenia or depression in otherwise vulnerable people or whether it actually causes these conditions in non-predisposed people is not yet resolved."
If they had a statistically significant link relating cannabis to ASD, you may have a reason to post here. But unfounded political statements are not helpful.

Hi All as a followup to our previous note,

There are some pretty solid scientific links between Cannabis use and Schizophrenia. Studies done right here in BC show a 4 times increase in Phycosis/Schizophrenic like symptoms that require pharmaceuticals to control, for the rest of the persons life. These are folks who have no traditional family/genetic link to Schizophrenia.

The link found by doctors and researcher is much higher in children/teens who smoked marijuana early in life before there brain had fully developed. It's important information for those who believe that Marijuana is a benign substance, it unfortunately, is NOT.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1124674/

http://www.nationaldrugstrategy.gov.au/internet/drugstrategy/Publishing.nsf/content/C22A31B6C742DFE5CA25767E00122541/$File/m684.pdf

http://www.guardian.co.uk/society/2007/jul/27/drugsandalcohol.drugs

http://www.cbc.ca/documentaries/natureofthings/2010/downsideofhigh/

The science is pretty solid, but not well known in our current "political" quagmire of folks pushing for marijuana legalization.

Hi Folks,

And in the "What will they think of next?" category, we now have the use of medicinal marijuana on children with autism...

http://www.foxnews.com/health/2013/01/25/parents-treat-severely-autistic-child-with-medical-marijuana/?test=latestnews

Hi there,

I was referred here by the "Autism Funding in BC" website. Not sure if I'm posting in the right section, but I'm looking for a recommendation of an advocate/practitioner who his used to filling out the T2201. Our referring doctor was worried she might not fill it in correctly and therefore delay the process, or worse, cause our application to be rejected.

Thanks so much,

Melissa

Thanks Andrew for pointing out the "lack of access to Speech Therapy services in BC" article.

I know that the piece is about not being able to access publicly funded Speech Therapy in BC but as I read through it, I found that the costs stated were little confusing. It's a fact that each child's needs are different but in this case they are asking for a ~$72,000 per year program (Speech 4K/mth + IBI 2K/mth).

Would most parents consider that a higher end "Cadillac" program or a "run of the mill" program nowadays? For a newly diagnosed child $22K is not enough but is there a optimum amount new parents should be asking for base on X, Y and Z..etc requirements for budgeting?

The article is written in a way that makes it seems like the child is not getting any therapy although there was a short line about some form of IBI for $2,000 a month. Maybe the details got edited but is it fair to ask without stating all the facts, or costs should not matter, it should be something between the patient and physician regardless of costs?

What do you think? If you met your local MLA or MP how much would you ask for per child and how would you justify the amount?

Disclosure: My child's 14 now, he's doing well in school (thanks to "the ABA program") and I'm out of touch with the costs new parents have to deal with.

Regards

Joachim (Alex's Dad)

Hi Folks,

http://www.cbc.ca/news/canada/british-columbia/story/2013/01/11/bc-autismdelays.html

I thought I was reading an article about this end of the country, but then I realized it was about things at your end, and then I realized it's all the same. Wait, wait, excuses, excuses, etc.

Two and a half years...would that be the national average perhaps?

Andrew Kavchak (Ottawa)

Another anniversary - 2 years ago FEAT of BC issued a press release about the AFU's inefficiencies in processing payments and the effect that is was having on autism service providers, families and ultimately children with autism were the ones put in jeopardy.

http://www.cbc.ca/news/canada/british-columbia/story/2010/11/23/bc-autism-payments-delayed.html

2 years later nothing has really changed. Government inefficiency is not news but our kids and their right to medical treatment is!! Please join me in contacting Christy Clark and Stephanie Cadieux (and your MLA and the press) in keeping the pressure on them:

Email Address
premier@gov.bc.ca

Mailing Address
The Honourable Christy Clark
Premier of British Columbia
Box 9041
Station PROV GOVT
Victoria, BC
Canada V8W 9E1

Phone Number
(250) 387-1715

Stephanie Cadieux:

E-mail: stephanie.cadieux.mla@leg.bc.ca
Web site: www.stephaniecadieuxmla.bc.ca

Office:
Room 236
Parliament Buildings
Victoria, BC
V8V 1X4


Constituency:
120 – 5455 152nd Street
Surrey, BC
V3S 5A5

Phone:
604 574-5662

Both are also on Facebook.

I am hoping to get some advice from parents who have been through this before. My son is 5 years old and we are currently running an ABA program in our home 5 days a week. Lyric is responding wonderfully to the program and we want to keep the program running as long as possible.

However, in July next year, he will turn 6 and then our funding will significanlty drop. If parents out there are finding ways to keep running home ABA programs even after age 6, could you offer some advice on how you are funding them. Is it possible to get more funding than the $6000.00?

Thanks in advance for any and all advice. My email address is spuffyobsessed@gmail.com

So true Bev Sharpe. And thank you for your years of dedication in the fight and advocacy for our kids for medically necessary ABA treatment.

Barbara Rodrigues

8 years ago today, November 19, 2004 the Auton decision was rendered by the Supreme Court of Canada.

This judgment upheld the findings of fact from the BC Supreme Court that ABA Treatment was medically-necessary. The judgement failed our children by not ordering the provinces to pay for this treatment.
The serious flaw in the Supreme Court of Canada judgement was that this court, the highest court in the land, did not wanted to force the provinces how to spend their health care dollars.

What Auton did was put a spotlight on the inhumane exclusion of our autistic children from Medicare.

What can you do?

Continue your child’s ABA treatment program – it is the single treatment with the science , data and efficacy behind it – it works.

Join Medicare for Autism Now! Their website: medicareforautismnow.org
Your autistic child is a Canadian citizen who is worthy of their core treatment need for ABA and worthy of being included in Medicare.

Read and understand the Auton and Hewko decisions. These decisions outline critical facts which you can use to make good decisions for your children, for their treatment both at home and in school.

Thank you to Dr. Sabrina Freeman for founding Families for Early Autism Treatment and for your tireless work on both the Auton and Hewko cases.
Thank you to each and every family who courageously carries on a treatment program for their child.

I moved back to Canada in aug and my five year old son finally has a diagnosis here. He is turning six at the end of january I have been told that the funding will decrease and there is no scope for prepaying ahead of time for services. This is frustrating as the programs I am looking into now will not be effective if they are only for a few months. I was told I have the right to appeal so I sent an appeal letter to the autism funding people. Does anyone have any advice or experience with this?

Hi Folks,

From the opinon section of The Toronto Star's website: thestar.com
Published on Sunday November 11, 2012


How Canada is starting to tackle the autism crisis

By Senator Jim Munson


It’s almost 10 years since my eyes were first opened to autism and its daunting human and social implications. As I walked up to Parliament Hill one morning, I ran into a man peacefully protesting in front of the Centennial Flame. He and his wife had the heavy burden of caring for an autistic child, a son who could not even make eye contact with them. The boy was isolated as a result of his symptoms, and so too were they. The emotional and financial weight was too much.

The desperation that prompted him to make a protest sign and then stand on Parliament Hill that day was a kind of desperation I had never seen before. The intensity was etched in his eyes. He was hurting.

But he was also forthcoming and candid. And he certainly made his point with at least one person he met that morning.

I decided then and there that I had to learn more about autism and how, as a parliamentarian, I could make a positive difference in the lives of the many Canadians living with it.

I eventually found allies, but it wasn’t easy to find senators and MPs who understood autism and the crisis it had become. There are so many issues parliamentarians must grapple with and this was another one. Besides, most thought it was a provincial issue. But with a little perseverance, I launched an inquiry in the Senate.

The idea of getting a grasp of autism issues caught on. The Senate standing committee on social affairs, science and technology undertook a comprehensive study on autism funding, and in 2007 released its final report. The title, Pay Now or Pay Later: Autism Families in Crisis, intimated the core finding that “governments must pay now for autism therapy, services and supports in order to obtain the greatest return on investment. Otherwise, they will pay later in terms of much higher costs in future years for welfare, social services and institutional care.”

The report presented a series of hard-hitting recommendations for addressing the autism crisis: Stable funding for therapy throughout the country. A nation-wide public awareness campaign. Research programs. A knowledge exchange centre.

Among them, our call for a comprehensive national autism spectrum disorder (ASD) strategy stirred the most compelling and enduring debate. The autism community continues to this day to advocate that a national strategy is the only moral and effective response to the autism crisis.

I am often asked, “Do you think the government will ever commit to a national strategy?” My answer is yes. In fact, we have been progressing toward this for many years.

Despite a paltry initial response to Pay Now or Pay Later’s recommendations, the government has in recent years introduced meaningful programs and measures: Financial savings vehicles for parents of children with disabilities. Funding for the Canadian Institutes of Health Research to build on autism-related research. The creation within the Public Health Agency of Canada of a national surveillance system.

It’s a start.

In the absence of a national strategy, other levels of government and non-governmental groups have been filling in the gaps. Across Canada, grassroots organizations are delivering necessary but otherwise unavailable services — from referrals to co-ordination of early diagnosis and treatment.

Five years ago, in the same year Pay Now or Pay Later issued its call for a national strategy, the estimated rate of Canadian children being diagnosed with autism was one in 150. Today, it’s one in 88 — and will continue to rise.

October was Autism Awareness Month and many of us have lately been giving extra thought to autism. Awareness-building activities have been taking place in schools, community centres and other places where we gather and learn.

Reflecting on what I have learned from the autism community over the past decade, I am especially hopeful. Even the humblest of efforts, like the protest of one man on the Hill, can lead to significant outcomes. The improvements we want to see in the lives of people touched by autism might not come as quickly or in precisely the forms we would expect, but we are making inroads. The system we are constantly enhancing to address the autism crisis is reaching the doors of our federal government. These doors must open wider to bring all stakeholders into the same room to build a national ASD strategy.

Senator Jim Munson, a Liberal, is a long-time advocate for autism issues. In October his private member’s bill, S-206, An Act Respecting World Autism Awareness Day, passed clause-by-clause consideration by the House of Commons standing committee on health and will soon become law.

Important Supreme Court of Canada decision.


OTTAWA - The Supreme Court of Canada says a British Columbia school board discriminated against a severely learning disabled boy by not doing enough to give him the help he needed.

In their 9-0 ruling the judges sided with Rick Moore and his son Jeffrey, who is dyslexic.

They agreed with a 2005 British Columbia Human Rights Tribunal decision that found the North Vancouver school district discriminated against the boy by failing to accommodate his disability.

The B.C. Supreme Court overturned the tribunal ruling and that decision was upheld by the court of appeal.

The Supreme Court, however, overturned the lower courts, restored the finding of discrimination and awarded costs to Moore.

In the 15 years since the case began, Jeffrey was educated in an independent school and now works full-time as a plumber.

Today's announcement by the CIHR (Canadian Institute for Health Research) does not address what our children most urgently need - access to proven, (not novel treatment strategies), science-based autism treatment which is ABA.

It is rather timely that today, Medicare for Autism Now! released episode 9 in our web-series, "Medicare's Orphans"

This episode features, Lia Marinoiu, who lives in Scarborough, Ontario. Lia's brother, Simon is 21 years old, has severe autism and has never received ABA intervention. She describes how untreated autism has defined and limited not only her brother's life - but her's as well. Take a look at what "novel treatment strategies" will do. This is a very powerful and timely interview which I encourage you all to watch and share.

The CIHR and everyone on their payroll and in their back-pocket should watch and listen to what this courageous young woman and new voter has to say.

Watch it at: www.medicareforautismnow.org

Harper Government announces new research chair dedicated to autism treatment and care
Innovative research program to focus on mental health challenges facing Canadians with autism spectrum disorders

TORONTO, Nov. 5, 2012 /CNW/ - On behalf of the Honourable Leona Aglukkaq, Minister of Health, Parliamentary Secretary Dr. Colin Carrie, today announced a new research chair whose work will aim to improve the treatment and care of Canadians with autism spectrum disorders (ASD) throughout their lives. PS Carrie was joined by Mike Lake, Member of Parliament for Edmonton - Mill Woods - Beaumont. The chair is funded by the Harper Government in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, NeuroDevNet, and the Sinneave Family Foundation.

"Our Government is committed to helping Canadians maintain and improve their health." said PS Carrie. "That's why we are supporting research that will use innovative approaches to improve the health of Canadians who live with autism."

"Our Government understands the importance of working with organizations in the autism community and the role of the new research chair," added MP Lake. "These organizations provide a valuable link to Canadians affected by ASD and their families and they will be critically important to the success of the research program and implementation of the results."

Dr. Jonathan Weiss at York University is the recipient of the new Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research Program. He and his team will examine why people with ASD are prone to develop mental health problems, evaluate novel treatment strategies to help youth and adults with ASD deal with these issues, as well as other stressful events like bullying, and find ways to improve access to care for all. To achieve these goals, they will work with people with autism, families, service providers, and government to share cutting edge research that will inform mental health care policy and practice across the country.

"The majority of people with autism will experience mental health problems at some point in their lives. Good mental health translates into better outcomes for these individuals and for their families, and to a reduced demand on our health and social systems, which benefits all Canadians," said Dr. Weiss. "Thanks to the support from CIHR and its partners, we look forward to conducting research that addresses this need."

"Individuals with ASD transitioning from the protection of the family and pediatric health and educational services face a huge gap in the continuum of care, and access to meaningful supports," says Dr. Dan Goldowitz, Scientific Director of NeuroDevNet. "NeuroDevNet is delighted to partner in supporting the work of Dr. Weiss because his research addresses these fundamental issues in a thoughtful and applied manner."

The Harper Government and its partners have committed $1M over five years to support the Chair. York University has also committed matching funds to the research chair announced today, along with its community partner, the Spectrum of Hope Autism Foundation. CIHR encourages institutions to collaborate in the support of the best health research in Canada.

"On behalf of York University, I would like to congratulate Dr. Weiss on being named the recipient of the new Chair in Autism Spectrum Disorders Treatment and Care Research Program," said Mamdouh Shoukri, President and Vice-Chancellor. "York's Faculty of Health is home to some of Canada's leading researchers, who work collaboratively to improve health promotion, disease prevention and health care in the community. I am proud of their commitment to bettering the health of the nation."

The Canadian Institutes of Health Research (CIHR) is the Government of Canada's health research investment agency. CIHR's mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada.


Fact Sheet

Autism spectrum disorders
Autism spectrum disorders (ASD) are a group of developmental brain disorders with a wide range of symptoms, skills, and levels of impairment, or disability. A study by the National Epidemiological Database for the Study of Autism in Canada has found prevalence rates of 1 in 200 people to 1 in 300 people across Canada. There is a general agreement that the incidence of ASD is on the rise, but it remains undetermined if this increase is due solely to better diagnosis or other factors.

All children diagnosed with ASD demonstrate deficits in social interaction and verbal and nonverbal communication, as well as display repetitive behaviors or interests. In addition, they will often have unusual responses to sensory experiences such as certain sounds or the way objects appear to them.

While there is no demonstrated single best treatment regime package for all children with ASD, it appears that they respond well to highly structured, specialized programs. It is generally agreed that early intervention is important.

New chair in ASD treatment and care research
The Harper Government is partnering with organizations in the autism community to fund a new Chair in Autism Spectrum Disorders Treatment and Care Research with the aim of improving the lives of Canadian children and adults with ASD and their families.

Project description
Dr. Jonathan Weiss, a researcher and assistant professor at York University, is the recipient of the new Chair in ASD. He and his team will study innovative approaches to expand treatment and care research to address mental health problems in Canadians with autism across the lifespan. They will examine why people with ASD are prone to develop mental health problems, evaluate novel treatment strategies to help youth and young adults with ASD deal with these issues, as well as other stressful events like bullying, and find ways to improve access to care for all. To achieve these goals, they will work with people with autism, families, services providers, and government to share cutting edge research that informs mental health care policy and practice across the country. This collaborative research will also have a lasting impact by fostering the next generation of Canadian autism researchers and clinicians.

Funding
The Harper Government and its partners have committed $1M over five years to support the Chair.

York University has also committed matching funds to the research announced today, along with its community partner, the Spectrum of Hope Autism Foundation. CIHR encourages institutions to collaborate in the support of the best health research in Canada.

Partners
Government of Canada:

Canadian Institutes of Health Research
Health Canada
NeuroDevNet
Partners from the Autism Community:

Autism Speaks Canada
Canadian Autism Spectrum Disorders Alliance
Sinneave Family Foundation
SOURCE: Canadian Institutes of Health Research

For further information:
Cailin Rodgers, Office of the Honourable Leona Aglukkaq, 613-957-0200
David Coulombe, Canadian Institutes of Health Research, 613-941-4563

Hi Folks,

Well, it looks like something is going to be announced by the federal government at York University (northern Toronto) on Monday.

Do you remember a couple of years ago the Tories announced a five point autism plan on the eve of one of our demonstrations on the Hill? The five point plan (if creating another autism website can be called a "plan") included the funding of a research chair at a Canadian university. If I recall correctly, a million bucks was put aside for it and the designated university was Simon Fraser. Regrettably, it seemed that no one applied or no one was qualified (I heard that a candidate ended up going to the U.S. instead) and if I remember correctly, the money lapsed. So much for the plan.

However, now they will be announcing something along the lines of "autism treatment and care". Could this be another "research chair"? We'll just have to wait and see...


CIHR
Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet, the Sinneave Family Foundation
and

Dr. Colin Carrie, Member of Parliament for Oshawa and Parliamentary Secretary to the Minister of Health

Mr. Mike Lake, Member of Parliament for Edmonton – Mill Woods – Beaumont

are pleased to invite you to an announcement on

Autism Treatment and Care

Monday, November 5, 2012
9:00 a.m.

York University
4700 Keele Street
Toronto, Ontario

Life Sciences Building, Lobby
6 Thompson Road

RSVP by November 2, 2012 to Gabričle Caza-Levert at Gabriele.Caza-Levert@cihr-irsc.gc.ca

Hi Again Folks,

Well, I think the World Autism Awareness Day Bill actually received Royal Assent today. If that is indeed the case, then by law, April 2 shall be known in Canada as "World Autism Awareness Day" and will give our community an opportunity to get some attention. If the Bill is indeed now law, then I believe it would be fitting and proper for as many members of our community as possible to send Senator Munson a message thanking him for his efforts.
You can find his email at www.parl.gc.ca and on his own website.

THANK YOU SENATOR MUNSON!!!
Andrew Kavchak (Ottawa)

Status of the Bill


S-206
AN ACT RESPECTING WORLD AUTISM AWARENESS DAY

Short Title
World Autism Awareness Day Act

Sponsor
Sen. Jim Munson

Last Stage Completed
Royal Assent (2012-11-01)

Text of the Bill available at: http://www.parl.gc.ca/content/hoc/Bills/411/Private/S-206/S-206_3/S-206_3.PDF

The Bill started off in the Senate last year.

Senate

First Reading
Introduction and First Reading
2011-10-04

Second Reading
2011-10-26

Referral to Committee
2011-10-26

Committee
STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY

Committee Report Presented
2011-11-24

Third Reading
2011-11-29

House of Commons

First Reading
2011-12-01

Second Reading and Referral to Committee
2012-06-20

Committee
STANDING COMMITTEE ON HEALTH

Committee Report Presented
2012-10-17

Report Stage

Concurrence at Report Stage
2012-10-23

Third Reading
2012-10-23

Senate
Royal Assent
Statutes of Canada: 2012, c. 21
2012-11-01

Hi again Folks,
This is actually rather astonishing. The committee reported back to the House after its clause by clause review (between second and third reading of the bill in the House) and made no recommendations for amendments. Given how much Mike Lake expressed opposition to the provisions of the Bill when it was first tabled in Parliament (e.g., one of his complaints was that the reference to the prevalence rate was not appropriate, even though the figures used were outdated compared to the latest from the CDC), I find it a heartwarming that Senator Munson's tenacity paid off!


House of Commons
Wednesday, October 17, 2012.
Hansard Debates

Committees of the House
Health

Mrs. Joy Smith (Kildonan—St. Paul, CPC):
Mr. Speaker, I have the honour to present, in both official languages, the 11th report of the Standing Committee on Health in relation to Bill S-206, An Act respecting World Autism Awareness Day. The committee has studied the bill and has decided to report the bill back to the House without amendment.

Hi Folks,
I just came across this transcript of one of the House of Commons Standing Committee on Health meetings relating to Senator Munson's bill declaring an Autism Awareness Day.
There are several interesting things here that I think are worth exploring. First, as a matter of context, getting autism on the agenda of the Standing Committee on Health is huge. When I was protesting on the Hill back in 2004, 2005 and 2006, this was one of the objectives. Generally speaking, getting the House Standing Committee on Health to do a study and issue a report with recommendations would be a potential big boost for the cause. Although I wrote to their members and the Chair on more than one occasion, they did not consider autism worth studying at the time. At least Senator Munson managed to get the Senate committee to do a study and issue a report recommending a national strategy. Of course, a Senate committee is not composed of elected politicians and its weight in Parliament and influence on the governing party is limited, particularly when the governing party is loaded with people like Mr. Clement (I remember one autism advocate who met with Mr. Clement when he was the health minister saying to me afterwards that "it is difficult to do great things with small people").

I think we all understand that a bill to declare an autism awareness day is not really doing much to help get our kids access to the medically-necessary treatment they need. So let's see whether there is at least some benefit we can get out of this development. When one reads the transcripts of the meeting, one sees that they are not just talking about awareness. Other issues are being raised. Imagine what would happen if every family with a member who had autism now wrote a short letter or sent an email to the committee saying that these hearings are sweet, but not remotely close to addressing the serious gaps in policy and programs and that we need a full-scale study and serious report by the committee with recommendations to the government on action that is required starting yesterday? I think we need to be able to find good quotes in this transcript and use them in a strategic manner. I have often found that our community misses many opportunities. Of course it takes energy, and our supplies are short for obvious reasons. But I remember when Senator Munson's committee report came out that one autism blogger in New Brunswick gave the report a very critical review and summarily dismissed it, rather than giving some thought to how we may make use of it in a manner that incrementally advances our interests. I was surprised by the negative approach towards something that was ultimately supportive of our cause.

On the committee there are several interesting characters. Colin Carrie has a child with Aspergers' Syndrome. I met with him after the Tories formed the government. Unfortunately, although he came to our rallies when in opposition, once he was on the government side, he seemed to have developed ADD or something. Then there is Massimo Pacetti. He is the MP of the area where my parents in law live in Montreal and they met with him years ago. Apparently he is a former school administrator and was very sympathetic and understanding. But that's as far as it went (tabling the petition). Then there is Mike Lake. Gag. This guy has for the past few years made his opposition to the bill quite clear. His alternative is not. Yes, he speaks a lot about great researchers in Canada, but seems to want to do everything to sabotage discussion about treatment in Medicare now.
I found Margaret Spoelstra' referral to Autism Ontario as an advocacy organization rather bizarre. What advocacy have they done? I never saw them on the Hill. Moreover, they and the ASC repeatedly kept telling me that they could not advocate for fear of losing their charitable status.
Anyway, it sounds like the Bill got passed this Committee stage. I still have to confirm the status, but it seems that it is farther in the legislative process than Shawn Murphy's National Autism Strategy Bill when it was killed by Lake, Carrie, etc. at second reading a few years ago. So, who knows? Maybe this Bill has a chance to become law some day in this session of Parliament. I'm crossing my fingers and hoping that one more step will be taken in the right direction and contribute to a momentum that will ultimately bring us to the promised land.
Best regards,
Andrew Kavchak, Ottawa.

House of Commons
Standing Committee on Health

NUMBER 057
l 1st SESSION
l 41st PARLIAMENT


EVIDENCE
Tuesday, October 16, 2012
[Recorded by Electronic Apparatus]


The Chair (Mrs. Joy Smith (Kildonan—St. Paul, CPC)):
Could we ask the members to please be seated. We will begin.


I would like to welcome Senator Munson. Thank you so much for being here today.


Pursuant to the order of reference of Wednesday, June 20, 2012, Bill S-206, An Act respecting World Autism Awareness Day, I want to welcome you, Senator Munson.


We will begin.


Hon. Jim Munson (Senator, Lib., Senate):
Thank you, Madam Chair. It is really a pleasure to be with my parliamentary colleagues this morning. It's Tuesday, October 16. It has been a long journey, but a very positive journey for me, my team, and my office, and for senators—Conservatives and Liberals on the Senate side—in working with the autistic community.


As we know, this bill deals with An Act respecting World Autism Awareness Day. This bill has had quite a journey. We've had a number of prorogations and one general election among the events that complicated what I believe should have been a straightforward passage. But this happens in politics. Being a former journalist and covering the Hill—I can't believe it—in the 1970s and 1980s, I understand that in a democratic system elections do get in the way from time to time.


I'm here as a parliamentarian. I've been tremendously encouraged by the reception this little bill has received at various stages and from all parties throughout its circuitous journey. It would not be where it is today, attending consideration by your committee, were it not for all the individuals here on the Hill and throughout this country who recognize the implications of and the need to address the mounting autism crisis.


On October 19, 2011, almost exactly one year ago, I stood in the Senate chamber when the bill was moved to second reading. I felt it was important on that occasion to recognize some of the people who have supported the bill in efforts to help Canadians become more sensitive to the realities of autism.


In the Senate we've worked together with Conservative Senator Keon, who's been a great supporter, along with Senators Oliver, Eggleton, Mercer, and Trenholme Counsell. I have to say at this particular point that one of the good things about working in Parliament is working with politicians from all sides. It has been a pleasure working with Mike Lake, and in particular, Jaden, who has been an inspiration in all of our lives. I'm also heartened by working with my colleagues from the New Democratic Party, from Peter Stoffer to Glenn Thibeault and many more who have supported this particular bill.


Dany Morin, who brings so much to this committee, I understand, covered the key strategic issues related to autism. These include the necessity for all levels of government to support research on the real causes of ASD. Jacques Gourde reminded those present of the Canadian adolescents and adults with autism who did not have the benefit of early diagnosis and prompt treatment, illustrating just how important it is to have easy access to reliable information. Monsieur Gourde described their experiences this way: “Teenagers are all too aware of their limitations and differences, which can make them feel marginalized, vulnerable, and isolated.”


For me it's been 10 years. I walked onto the Hill. I was appointed in 2003. There was a gentleman on the Hill who was wearing a billboard. He said, “Munson, you're not going to walk by me. You used to work at CTV. You should see this as a news story.” I looked at him and saw that he had a billboard saying, “Please help my son.” I was not that familiar with autism, and I said, okay, let's sit down and chat.


So it was because of that gentleman, Andrew Kavchak, and many others that I said, “What should I do about this?” I made a statement in the Senate. We're not televised, so people don't see our statements very often. Then somebody said, “Well, why don't you launch an inquiry?” I said, “How do I do that?” Well, that's a longer statement, so I did that. Then I said, “What happens now?” They said, “Well, you haven't built up enough support yet.” I said, “Well, damn it, how far do I have to go on this?”


The social affairs committee in the Senate sat back and said they'd have a limited study, but it turned out to be a pretty darned good study, called “Pay Now or Pay Later, Autism Families in Crisis”. That was in 2007. That's a bit of the background. The words “pay now or pay later” came from a gentleman from Fredericton, New Brunswick, who was one of our witnesses with Asperger's. He said, folks, if we don't do something more in terms of recognition and paying more for science and research, you're going to pay now or you're going to pay later. And is he correct about that.


We have so many national strategies in this country dealing with heart disease, diabetes, and cancer, so why not autism?


With each passing day, the need for a greater federal commitment to address this health crisis becomes greater and greater. At the very minimum, I believe the federal government has a role in the lives of aboriginal children who have autism. I think there is a place for more leadership.


I have to congratulate the government for what it has done thus far in helping set up a surveillance and monitoring system, which I think is extremely important. I also believe that with one in 88 children in this country having ASD, what the Minister of Finance did is extremely important. He has been very good to some of my causes, including the Special Olympics. He introduced the registered disability savings plan a few years back. It is an excellent, sensitively crafted savings vehicle for parents who have children with disabilities.


This bill about World Autism Awareness Day is more than just an act respecting World Autism Awareness Day. It's an act respecting those families that have to deal with autism every day. Isolation is, of course, one of the principal characteristics of autism, but the disorder also isolates the families and friends of people. Constant care is often required.


As we all know, and as you folks in this committee know—you've studied it and you've talked about it in Parliament—this could mean that in a two-parent family, one person stays at home full time and looks after the child with autism. It's a heavy burden. Simple activities such as birthday parties, play groups, play dates, trips to the library, and even an afternoon in the park can be exhausting and demanding.


For me, it comes down to one simple thing. It was said when I was in Halifax last week. I was handing out a Diamond Jubilee Medal to Dr. Susan Bryson at the IWK, the children's hospital in Halifax. The minister's deputy of the government in Nova Scotia said that what's so important is that we need to have the things others have so that a son or a daughter, through whatever therapy helps, can have a sleepover, just like any other child. I think we have to think about that. Some of the natural things that we accept do not happen naturally with an autistic child.


This bill to respect World Autism Awareness Day will not change many realities, but it will send out a message that these families deserve to hear. It will say that Parliament, parliamentarians, are thinking of these children and that we have more to do to help these children, as the preamble to my bill states. It will say to these children and their families that they are not alone. It will show these families that their plight matters and that the people of Canada respect and admire them for doing the best they can in the name of their children, brothers, sisters, grandchildren, nieces, and nephews.


World Autism Awareness Day will help build awareness among Canadians about autism, its symptoms, the people who are affected by it, and the need to address the crisis it has become.


Just as this day would engage individuals and society, so too would it empower governments to do even more. It would be my wish to see the federal government increase its involvement. We have taken major steps, but we have to go further, in my view, where the need is greatest, such as in funding and programs for aboriginal children, as I said before.


My former colleague, Dr. Keon, had good advice for me. He still knows so much. He told me to keep pushing for a federal role in science and research. World Autism Awareness Day would be the ideal opportunity to get this message out. So I sit here humbly before you. And I'm grateful to all of you, Madam Chair, and vice-chair, and all the esteemed members of this health committee, for the consideration you are giving this bill and the people who represent its purpose.


I'm here to answer any questions to the best of my ability.


Thank you very much.


The Chair:
Thank you, Senator Munson.


I would ask the rest of the witnesses to approach the table and take your seats in front of the microphone so we can hear your presentations.


Now we're going into the second part of our witness presentation.


Thank you so much, Senator Munson, for your presentation as sponsor of the bill. It was very insightful to hear your presentation. I thank you for that.


We have, from the Canadian Institutes of Health Research, Jane Aubin, and Nathalie Gendron, assistant director. Welcome.


From Autism Society Canada, we have Richard Burelle, executive director. Welcome.


From Autism Ontario, we have Margaret Spoelstra. She is the executive director. Welcome. I'm glad you could come.


On video conference, joining us soon from Autism Speaks Canada, we will have Suzanne Lanthier. She is a member of the board of directors. I assume she will be joining us very shortly.


Can we begin, please, with the Canadian Institutes of Health Research?


Will you be sharing your time with Nathalie, Ms. Aubin?


Dr. Jane Aubin (Chief Scientific Officer and Vice-President, Research and Knowledge Translation, Canadian Institutes of Health Research):
I'll give the speech and Nathalie may also participate in answering questions.


The Chair:
You know that you have a five-minute presentation.


Thank you.


Dr. Jane Aubin:
Thank you very much, Madam Chair and honourable members, for the opportunity to address you today regarding the work of the federal health portfolio on autism spectrum disorders, or ASD.


Let me say at the outset that I am not an expert on ASD. My own research through the University of Toronto deals with musculoskeletal health and arthritis. But as the chief scientific officer for the Canadian Institutes of Health Research, or CIHR, I am pleased to bring you information about federal ASD-related projects. My colleague, Dr. Nathalie Gendron, is with me today as a subject-matter expert.


Your deliberations are about ways to raise awareness of ASD, and I submit to you that the research and surveillance activities supported by the health portfolio provide the facts on which to build this new and growing awareness. At the same time, drawing increased public attention to ASD serves to highlight the impact of research and to generate more support for it.


If we are to do justice to this issue by raising more public awareness about it, one of the most important things we can do is to continue to build our knowledge base and to apply that knowledge to ease the path of people with ASD and their families. The Government of Canada supports a number of activities aimed at doing just that. For instance, my colleagues at the Public Health Agency of Canada are developing a national surveillance mechanism to systematically collect essential data to better understand how many Canadians are living with ASD, and their circumstances.


To ensure that the surveillance system is robust and useful, the agency consulted with provincial and territorial governments to determine priorities and data availability. It has also established an expert advisory committee to review information collected from the provinces and territories and to help identify indicators and appropriate models. This committee includes representatives from government, universities, health care, and community groups.


With respect to advancing the science of ASD, the Government of Canada has made significant investments through the Canadian Institutes of Health Research. Since its inception in 2000, CIHR has invested nearly $44 million in autism-related research, with $5.8 million invested this year alone.


Our work in the area of ASD is led by our Institute of Neurosciences, Mental Health and Addiction, but several of our other institutes are also involved. This helps to bring to bear many academic disciplines and perspectives on this very complex problem.


Through CIHR, the Government of Canada has recently established a chair in ASD treatment and care research. The purpose of the chair is to support an early career investigator to bring innovative approaches to the treatment and/or care of ASD. Partners for the chair competition are CIHR; Autism Speaks Canada; the Canadian Autism Spectrum Disorders Alliance; Health Canada; NeuroDevNet, which is one of the national centres of excellence; and the Sinneave Family Foundation.


We are delighted that Dr. Jonathan Weiss of York University has accepted the chair appointment, following a rigorous selection process that was administered by CIHR. Dr. Weiss is a licensed clinical psychologist and a rising star in ASD research.


In addition to this new chair position, CIHR is supporting a range of other research projects into ASD and activities through our regular granting mechanisms. People like Dr. Adrienne Perry at York University, Dr. Susan Bryson at McMaster, and Dr. Isabel Smith at the IWK Health Centre in Halifax, among others, are all contributing to the ASD knowledge base.


Other CIHR research programs are aimed at health services. For instance, the CIHR signature initiative in community-based primary health care encourages researchers to investigate the ways in which health care services are structured, regulated, managed, financed, used, and delivered. For people living with ASD and their families, better service delivery could make all the difference.


Finally, in our convenor role, CIHR supported the international meeting for autism research and a stakeholder-focused workshop held in Toronto in May of this year.


CIHR is also pleased to reach out to stakeholders and interested members of the public regarding ASD. We'll be doing this again on October 29 in Edmonton, when the CIHR Institute of Neurosciences, Mental Health and Addiction hosts a Café Scientifique on ASD. This will be a great opportunity for raising awareness and sharing the latest in scientific research on ASD in an informal and comfortable setting.


Madam Chair, honourable members, I would like to close simply by emphasizing the fact that the efforts I have outlined are not solutions in themselves. Rather, they are interdependent activities that get us closer to a solution. Our approach must continue to combine work on causes, treatments, and care with surveillance and sustained efforts at raising awareness.


I thank you very much for the opportunity to speak to you today. I'll be happy to answer questions later.


Thank you.


The Chair:
Thank you very much, Ms. Aubin.


We'll now go to Autism Society Canada, to Mr. Richard Burelle, please.


Mr. Richard Burelle (Executive Director, Autism Society Canada):
Good morning. My name is Richard Burelle, and I am the executive director of the Autism Society of Canada.


Madam Chair, committee members, Senator, members of Parliament, and guests, I want to thank you for allowing me to represent Autism Society Canada as we give our wholehearted support to Bill S-206, An Act respecting World Autism Awareness Day.


Last night I sat down, pen in hand, ready to make some notes about what I wanted to speak to you about today regarding our support for Bill S-206. I gathered my notes—they're all right here beside me—including the number of committees the ASC has; the challenges and successes we have gone through; the news on advances we have made at the federal level; and the list of hurdles that are still ahead.


But I hesitated, because what I really want to talk to you about is people. I especially want to talk to you about family members and caregivers, those very people who are challenged on a daily basis to support and care for loved ones living with an ASD, an autism spectrum disorder.


Let me share with you a story. A little while ago, Autism Society Canada received a memorial donation for someone who had, I suspected, wanted to send a gift to a charity in lieu of flowers. We're always appreciative of those who think of us at a time that must be extremely difficult.


The next day we received a few more donations in memory of the same person. Her name was Susan.


A couple of days passed, and yet a few more memorial donations came in for Susan.


This is not totally uncommon. Our organization may receive quite a few gifts in memoriam during the course of a year. However, I thought to myself that Susan must have been a pretty special person to have so many friends and family members who cared about her. I felt as if Susan herself was sending us all her flowers.


As is often the case with memorial gifts to national organizations, I normally do not know the deceased personally, and I'm often unaware of their connection to Autism Society Canada. This case would be different.


A couple of weeks after that first memorial gift, I received a letter from Jan, who is Susan's mother. She wrote to me to tell me about Susan.


You see, Susan was the mother of a child living with an autism spectrum disorder. Jan told me about how Susan fought for five years with her local school board to get her child in an appropriate class. She told me how Susan's child did not have friends at school, nor in the neighbourhood. She told me how Susan felt: that she had failed as a mother and as an advocate for other children with autism. Jan told me that Susan had taken her own life.


Losing Susan should not have happened.


I have chosen to recount this tragedy, which is an extreme case, to illustrate a point. There's a misnomer out there that autism is not deadly. I would beg to differ. Autism awareness is clearly lacking.


I applaud Bill S-206, An Act respecting World Autism Awareness Day, which by definition takes on this issue. Ignorance of autism can no longer be an excuse.


For Canada, this act is essential to support the many autism organizations striving to work together on behalf of individuals living with an autism spectrum disorder and their caregivers across this great country.


Bill S-206 also gives Canada a unique opportunity to demonstrate leadership in this area to the international community.


In closing, I would like to reaffirm the need to raise awareness on autism spectrum disorders so that tragedies like Susan's never reoccur.


Autism Society Canada has a broad reach. Our member societies work in direct contact with families, caregivers, individuals living with an ASD, across this country. Our societies inform us that access to services from one province to another is indeed unequal. There exist glaring gaps in treatment and resources across this country. We believe it is time for this to be addressed. We believe it is time for a national autism strategy in Canada.


Madam Chair, I would like to thank you and members of this committee for your invitation to be present today. I would also like to thank you, Senator Munson, for your unwavering dedication to pursuing Canada's full support of World Autism Awareness Day.


Thank you very much.


The Chair:
Thank you for your heartfelt presentation. It certainly brings to mind how real the challenges are around autism. Thank you.


We'll now speak with Autism Ontario and Margaret Spoelstra, executive director. Thank you for coming, Margaret.


Ms. Margaret Spoelstra (Executive Director, Autism Ontario):
Madam Chair and committee members, thank you very much for the opportunity to speak with you and the Standing Committee on Health.


As a director at Autism Ontario, one of the largest advocacy organizations in Canada, it's my honour to be working for such an organization that is led by 300 volunteers, mostly parents, through 28 chapters throughout Ontario.


People with autism spectrum disorders and their families in Ontario have been waiting a long time for national recognition as full citizens of Canada. They have tremendous gifts to offer despite their significant challenges with social understanding, sensory sensitivities, and fitting into a neuro-typical world, a world that seeks out novelty and yet finds the novel, sometimes unusual mannerisms and unconventional social responses of people with ASD to be uncomfortable or, at worst, unacceptable.


For many years, the media has portrayed autism as a condition associated with children. In their early years, their parents are desperate to find clear, accurate diagnoses, assessment, and evidence-based intervention that will help their children to get the best possible start in life. Canadians need to know that far too many families are waiting for these services and intervention, and missing vitally important and comprehensive supports.


In school years, children and teens with ASD have unequal access to quality, individualized education that meets their unique learning needs. They are frequent targets for bullying by peers, and often fail to achieve their potential through kind, but untrained, professionals in evidence-based practices. It has been said that when you've met one person with autism, you've met one person with autism. ASDs are complex. In addition to the difficulties they face in navigating social environments and societal demands, over 50% of people with ASD will also experience mental health challenges in their lifetime, many already beginning in their youth. With quality individualized health and education supports and tailored environments, these children can grow up to have jobs, make friends, and enjoy their families and communities.


Children with autism grow up to be adults with autism. Their parents worry, “What on earth will happen to my son or daughter when we're gone?” Caregivers of children, young and adult, face enormous stress in raising their children across the lifespan. We can improve the experiences of these families through a day such as World Autism Awareness Day in Canada, so that there is greater understanding in communities across the country, and so that people with ASD might take their places as full contributing citizens of Canada.


In 2007, Senator Jim Munson sought a national strategy for supporting people with ASD and their families. The “Pay Now or Pay Later” paper identified the same points being made today. Such a strategy includes the funding of excellence in research, clinical services, education, and the creation of inclusive, welcoming communities. With one in 88 children being diagnosed in the U.S., and one in 100 children in Canada, in recent studies, the numbers are growing daily to crisis proportions. We must not fail to support people with ASD, our most vulnerable citizens. Autism Ontario strongly supports the passage of Bill S-206, An Act respecting World Autism Awareness Day as an important step in achieving acceptance and opportunities for all people with ASD.


Thank you very much.


The Chair:
I thank you very much for your presentation, Margaret.


We are to have by video conference Suzanne Lanthier of Autism Speaks Canada, but she has not arrived yet, so we will go into our five-minute question-and-answer rounds. We want to make sure that we get through this bill, because we have committee business, as promised, and we have the clause-by-clause.


Having said that, we will begin with Ms. Davies, for five minutes, please.


Ms. Libby Davies (Vancouver East, NDP):
Thank you very much, Chair.


First of all, to Senator Munson, thank you very much for coming here today to present your bill, and to the witnesses who all did an amazing job of giving us a real sense of what this issue is about.


We're only spending one short meeting on this, and it's not enough, so I'll get into it right away. Obviously, we support the bill. To raise awareness is very important; that's a given.


I want to read out an e-mail that I received from a parent who has three daughters who are on the autism spectrum. Her name is Amy. What she wrote to me was that


'Autism Awareness' is done and advocated for with the best of intentions. However, it is not something that is actually for autistic people and their families. They are already very aware.



She's saying that awareness is not enough:


Awareness needs to be matched by meaningful action. It must lead to appropriate lifespan supports and services across this country that allow autistic people and their families to reach their fullest potential.



You've all spoken about that. I want to get at the issue of what more we should be doing.


Senator, your bill is about an awareness day. I know that the Senate committee you instigated in 2007 made a number of recommendations, one of which was calling for the federal government, in collaboration with the provinces and territories, to establish a comprehensive national autism spectrum disorder strategy, including treatment, supports, and so on. I believe the Conservative government, in their platform in either 2006 or 2008, also promised such a strategy.


I wonder whether you have had any response to the Senate committee report or whether any of the other organizations are aware of any further support. It seems to me that the awareness is very important, but that unless we follow through on the need for a strategy and the treatments and supports to families, we're not getting nearly as far as we must get.


Could you respond to that?


Hon. Jim Munson:
I'll talk briefly, and perhaps the other witnesses can say a few words.


Meaningful action is what is extremely important. This is not the last step; this is the beginning of many steps, from my perspective, of what we're all trying to do in dealing with it.


As I said, the government's new surveillance and monitoring program is a good first step. Also, dealing with the issue of the disability payments, many grandparents and others have come to me and said that this is a really good step.


But those are only steps. I fully believe, and said in my statement about aboriginal youth, that, my goodness, children are slipping through the cracks every day in the aboriginal community alone. Why couldn't that be a second step for a national government's involvement?


I also believe that it's time to think outside the box. I know there are provincial governments that are delivering autism services as well as they can, but it's about time to think outside the box. We have the terminology that “it's a provincial responsibility”. It's Canada's responsibility.


I feel that whoever is in power should think outside the box and bring people together in a room like this, with scientists and researchers and other politicians from all spectra, to sit down to hammer out something that can work. I really believe that—and not only for autism, but for those with other severe intellectual disabilities.


I'm originally from Atlantic Canada—I'm from northern New Brunswick—and I'm an Ontario senator, but I'm a Canadian. As a Canadian, I'm tired of hearing about people who are getting on little airplanes in northern New Brunswick and travelling to Alberta and other provinces to get treatment, which lasts from zero to the age of 18, with a diagnosis.... You name it.


We have to get there, and I think what we're all trying to do is get there. I think we have a moral, ethical, and a loving obligation to get there.


Ms. Libby Davies:
I totally agree with you, and let's hope that a federal strategy is coming, as promised.


I want to raise the issue of gender. I don't know if any of the organizations here today have further information on the issue, particularly on young girls who are diagnosed a number of years later, so that they often miss out on the early intervention. Very little research is done on this, but there is some research.


I wonder if some of the organizations have looked at the issue of gender, of girls versus boys, and how we're falling behind in intervention, support, and treatment for young girls because they're often not getting diagnosed early enough.


Could you address this briefly?


The Chair:
I'm sorry, I'm trying to wind this up.


Margaret, could you quickly respond to that?


Ms. Margaret Spoelstra:
Sure.


You're absolutely right that girls are underdiagnosed. Part of the diagnostic challenge is because girls are socialized much earlier on how they should behave, and they often go under the radar. Unless there is a particular behavioural response, they tend not to be recognized for that, but underneath a very quiet or calm exterior are often significant challenges and mental health issues that emerge later on in their lives.


Autism Ontario runs girls groups, very specifically, and brings girls together to help them deal with significant social pressures. Girls are significantly at risk at school, for date rape, and for other social challenges, in relationships as they get older, and even as they become young women making choices.


The Chair:
Thank you, Margaret.


We'll now go to Dr. Carrie and Mr. Lobb. They will share their time.


Dr. Carrie, go ahead.


Mr. Colin Carrie (Oshawa, CPC):
Thank you, Madam Chair.


I want to thank the witnesses for being here. I particularly want to thank Senator Munson for all the good work he has done. People around the table know our family was one of those families that had to fight the school board. My wife put her career on hold to help with our son, who was diagnosed with Asperger's. We went for the private school, and I'm happy to say he started university this year. So with a lot of hard work and sacrifice.... The success stories are out there.


With the system we have in Canada, there are challenges with provincial–federal jurisdiction. Dr. Aubin, you mentioned the steps the government has taken. Senator Munson said we have to start thinking outside the box, that we have to start working on science and research.


Could you talk about the role of the federal government and the role of the provinces and territories in delivering health services for people with autism spectrum disorder in Canada?


Dr. Jane Aubin:
Thank you very much for your question.


Let me start by reiterating that CIHR, as a federal funder, funds the best research across the nation. It covers the most basic research on the genetics behind susceptibility to autism, to help with early diagnosis and early intervention. At a national level, we are funding across the country.


We play a very important convenor role as well. What I mean is that we don't just convene researchers to share their research findings and build upon them; we convene partners. We convene provincial partners. We convene the policy makers with researchers, to share and act upon the evidence we require. It's at a multiple level that CIHR and its other health portfolio partners coordinate our activities and bring together the information with partners.


I hope that speaks to some of what you're interested in knowing, and I'm happy to speak further.


Mr. Ben Lobb (Huron—Bruce, CPC):
Ms. Spoelstra, grandparents in my riding have a grandchild in the Niagara region. I want to run through their scenario briefly and explain if that is in fact the situation, and how we could improve the timeframe.


They knew their grandson, at 12 months, had a problem. It took 16 months for him to be diagnosed as severely autistic. They want their grandson and their son to be in the intensive behavioural intervention program; they've been told it takes three to five years to receive that treatment. They are number 750 on the list, so if that's the present-day scenario in Ontario, obviously that's unacceptable.


What can we do to get that number down to what is realistic? What else can we do? I'm sure there are hundreds of families in Ontario in the same situation.


Ms. Margaret Spoelstra:
You're absolutely right, that situation is unacceptable. We hear that story from families across the province on a daily basis, and they despair. To have a number like 700, or whatever, just says that child is not going to receive the best intervention we have to help him or her at this stage in their life, and to know that window is closing at a time when the plasticity of the brain is at a stage when it can accept lots of information and change. We know, in fact, that this treatment can have a significant influence on how that child develops for the rest of its life.


First of all, my heart goes out to those families. They should not feel that they're competing with another family whose kid did get on that list. All of those children should have access—all of them, not only the ones who are eligible for the service—to that early assessment and intervention at a time when it makes the most difference in their lives.


It is at least, in part, a funding matter, but it's also a policy matter and thinking about some ways to adjust the system, so that there is fairness for more families to have access to that. Also, it takes training, not only in those early years.... One of the biggest fears families have is exiting that system and moving into the school system—where the training for the professionals is not as it should be—so that families can feel confident that those same strong evidence-based practices are being implemented in the school years, and into adult life as well.


The Chair:
Thank you, Ms. Spoelstra, for your insightful comments.


Now we'll go to Mr. Pacetti, please.


Mr. Massimo Pacetti (Saint-Léonard—Saint-Michel, Lib.):
Thank you, Madam Chairman.


Thank you to the witnesses.


We all have stories about autism, so I don't think we need to get into that. You've got support around the table, so I'll try to focus more on educating myself on certain aspects.


Mr. Burelle, you referred to the fact that there's inequality in the services between provinces. Can you give me a couple of quick examples, if possible?


Mr. Richard Burelle:
I believe there's no study currently comparing the services across the country. What the Public Health Agency of Canada is trying to do is put in a surveillance program to actually get Canadian data on the prevalence of autism across Canada, which is a first step. We'll then be able to identify if are there pockets, if there are areas of the country where perhaps we need more services.


The Autism Society of Canada has proposed a pilot project in order to create a needs assessment across Canada. If we could create this needs assessment where it would actually be a study across Canada to figure out where the services are, in what areas, and if we could superimpose that upon the surveillance program, the gaps would clearly rise to the top.


Mr. Massimo Pacetti:
I don't mean to interrupt you; it's because we have limited time.


If the bill were to be passed, would this help that particular cause?


Mr. Richard Burelle:
Keeping autism in the forefront is always a good thing. As Senator Munson said, the fact that we're piggybacking on World Autism Awareness Day is great. Any kinds of forward steps we can take in order to keep autism in the forefront, to create that awareness, are steps in the right direction.


Mr. Massimo Pacetti:
Again, to educate me, maybe, Senator Munson, you can answer the question.


If we already have World Autism Awareness Day, wouldn't that already be officially recognized by Canada?


Hon. Jim Munson:
There has been a ministerial declaration, and that's a generous act on behalf of the minister, but that's a declaration from a government. What this does is set up a legal framework where Parliament, where you, as a member of Parliament, are speaking on behalf of Canadians; all of you parliamentarians are speaking on behalf of Canadians. Putting it into a legal framework...whatever government comes into power has to respect this day; 192 countries already do.


Remember, this only began in the United Nations in 2008. What it does here is empower every MP from every party to stand up and be counted. So it's about Parliament, which I think is extremely important.


To briefly answer your question, and I talked about this in the other questions, we can provide statistics for you to show you how different it is in different provinces. For example, in Nova Scotia it's wonderful what's going on. They have nine areas now in the province where you can go and get intensive behaviour treatment. Before, you went to Halifax. As I mentioned, in Alberta and other provinces the programs last longer. But at the end of the day, it's about us as Canadians, as parliamentarians. That sets a legal framework to recognize this in a legal bill.


Mr. Massimo Pacetti:
Let me challenge all of you. As members of Parliament we're asked almost on a daily basis to make a declaration or a statement on a certain day, and they're all valid causes. Tell me why World Autism Awareness Day has to be ranked up there?


Hon. Jim Munson:
I think World Autism Awareness Day should rank with the bills that have already been passed by Parliament. You have to mean what you say, right? You can't just get up and say, I have to do this because this is a good little press release and my constituents will like it, and so on. You have to be behind it, and show some spunk behind what you do with the bills.


We've passed a national seniors day in Parliament. We have passed a day to increase awareness about epilepsy, a national flag day, a peacekeepers day, and a blood donor week. What do they do? And by the way, my wife would be very upset—mon épouse est acadienne. There's an act respecting a national Acadian day. That's a great thing in our family, for a Scot like me.


In essence, what we're doing with these things is we're saying to every one of these communities that we're there and we're going to do more than just stand up in one day. This is about carrying this message forward. The surveillance and monitoring you're talking about would be a unique opening for the federal government once they have enough data to say, okay, provinces, come on, let's sit in a room like this and analyze it together with those who understand the science and research. That'll be another step—and I'm not going away.


The Chair:
Thank you very much.


Now we will go to Mr. Lake and Mr. Brown.


Mr. Lake has been a tremendous support to the autism initiative, and we're very familiar with his wonderful son Jaden.


Welcome to the committee, Mr. Lake.


Who would like to begin? Mr. Brown? Okay, thank you.


Mr. Patrick Brown (Barrie, CPC):
Thank you, Madam Chair, and thank you, Senator Munson, for putting this proposal forward. I think anything that brings awareness to autism is a step in the right direction. Thank you for all the comments here today.


On Sunday in Barrie we had our annual autism walk, and that's why I said to those who attended that this brings awareness and attention to the issue. For the hundred families that came out, it does. It raises the flag and expresses an intention that we want to do more. We want to raise it, we want to talk about it, and we want to have it in the public dialogue.


On November 10 we're having our annual gala in Barrie for the same purpose, to fundraise and to raise awareness. I think this is something that would be appreciated by families and friends who have loved ones who have autism.


My question is actually for Jane. I know there is a patchwork, in a sense, a variety of different services, depending on where you live in Canada. I know I've had families in Barrie tell me that it's fundamentally different in Alberta, for example. Could you explain the breakdown or the division of provincial, federal, and territorial jurisdictions when it comes to services for those with autism?


Dr. Jane Aubin:
Let me answer your question by really talking about CIHR's strategic research priorities, one of which is the strategy for patient-oriented research. This is a case where as a federal agency we're working in partnership with the provinces and territories to do exactly what's been commented upon, to bring together the knowledge from different parts of the country, to share collegially together, to work together, to harmonize, and to share best practices.


One of the particular initiatives under the strategy for patient-oriented research that I commented upon in my opening remarks is the community-based primary health care signature initiative. Within that initiative we're looking to roll out a national network to bring together the bits and pieces that exist in different provinces, to accelerate the sharing of what works within particular jurisdictions, and try to harmonize it at a national level. It's not only individual researchers, but working federally to convene the provincial policy-makers and health care professionals to deliver on best practices.


Mr. Patrick Brown:
I know Mr. Lake has a question.


Hon. Mike Lake (Edmonton—Mill Woods—Beaumont, CPC):
I'll be quick. I probably won't get time to ask a question, though.


I want to start by thanking our colleagues from all parties. You guys have been amazing. I have a 16-year-old son with autism, as I think just about everybody in this room knows. He's like a three- or four-year-old in a 16-year-old's body. He comes here every year and gets a chance to meet all of the MPs, and he tries to raise awareness in his own way. I have to say the response from colleagues, regardless of party affiliation, has always been amazing. I thank you for that.


Jim, thank you for your tireless work on this. You and I may not always agree on exactly what the answer is, but we agree that what we want to do is help people with autism, not just autism—people who need help in a lot of areas. On this specific issue, I thank you for the work you've done.


Stakeholders, we've had many, many conversations over the years. Kathleen, thank you for the work you've done. We've had the opportunity to bring you together with the officials. We have the officials sitting here at the table to talk about some of the issues that we've been talking about today.


I know I'm going to get a chance in a few minutes to actually ask some questions, but I'm going to use my time right now to say thank you for the work you've done, and to let you know how important this is to my family.


I think, Marg, you made the point that if you meet one person with autism, you meet one person with autism. That's what it's like with Jaden. The challenges Jaden has aren't the same challenges that everybody else has. Hopefully over time we'll get a chance to meet more and more people. We'll see them in stores when we go to the store, we'll see them working in the library when we go to the library, or, in Jaden's case, as he participates in musical theatre, and he cooks, and does things that we would never have thought he'd be able to do. Thank you all for the role you play in helping our families get to that point.


The Chair:
Thank you, Mr. Lake, for your very insightful support and all the help you've been to this particular initiative.


We'll now go to Dr. Sellah.


Mrs. Djaouida Sellah (Saint-Bruno—Saint-Hubert, NDP):
Thank you, Madam Chair.


I also want to thank all of our witnesses today for shedding some light on this issue.


You described the situation here, in Ontario, but I can tell you that things are worse in Montérégie, the region where I was elected. In fact, 1 in 106 children there is said to have autism or PDD. But the figure for the rest of the country is 1 in 110. I also know that the wait time for a diagnostic assessment is 18 months, and that assessment is limited to children 0 to 5 years of age. That's a pretty small window when you consider treatment. After the age of 5, children attend regular schools like others their age, even though the schools aren't properly equipped to meet the needs of autistic students. Unfortunately, once they turn 18, they are left to their parents' devices or, without a family to care for them, they end up in a residential, long-term care centre.


Do you have an idea of where things stand in the rest of the country, as compared with my region?


The Chair:
Who would like to take that question? Nathalie, would you like to?



Dr. Nathalie Gendron (Assistant Director, Canadian Institutes of Health Research):
Every province in the country has problems in terms of services. One thing is crystal clear: the level of care being provided to children and adults with autism is not as advanced as it should be.


Nevertheless, we are here on behalf of the federal government, and its role is quite clear. We can support research efforts across the country, as Dr. Aubin mentioned. We can support initiatives that target epidemiology, as well as surveillance. Bear in mind that federal government efforts fall within our mandate and are aimed at supporting what the provinces are doing. Health care services are the province's domain, at the ministerial, hospital and community level.


The role of the research or surveillance work being done by the Public Health Agency of Canada is to support the provinces. That support is in the form of information provinces need to identify the most effective services and the best diagnostic tools to ensure children are looked after quickly following an autism diagnosis. As far as surveillance goes, the incidence and prevalence of the disorder do vary from one part of the country to another, as you pointed out. Given the complex nature of the disorder, a Canada-wide study focusing on prevalence and incidence is necessary to fully understand the range of children affected and their needs. That will result in an effective surveillance system.


All federal efforts are meant to support the provinces in their decision making, be it in terms of finances or health priorities. In addition, as Dr. Aubin mentioned, we are doing a lot of research at the community level. It is clear that most people who have an autistic family member or who are autistic themselves need community-based support. So that's the type of research we are working on.


I want to stress, however, that we cannot lose sight of our role or the need for close cooperation with the provinces, so they can come up with the best possible strategies based on the information we give them.


Mrs. Djaouida Sellah:
I am quite familiar with the problems surrounding autism. As a health care professional myself, I am especially aware of the social repercussions. The bottom line is that parents are having to turn to private institutions for help and ending up penniless as a result. I want to know whether help is on the way for these parents or caregivers.


An answer to my question would be appreciated.

[English]


The Chair:
Thank you so much, Dr. Sellah.


Now we'll complete our round of questions with Mr. Lake.


Hon. Mike Lake:
Thanks again.


The bill as presented is designed to increase awareness, and I just want to talk about that awareness. Notwithstanding the fact that we have a long way to go in terms of awareness, I think we can acknowledge that we've actually come a long way in terms of awareness. As a parent, certainly there's definitely more awareness I find in society than there was six or seven years ago—awareness of the challenges we face.


I would also say there is awareness in the sense of what we can do about it. I think an important part of this discussion is what we do in Canada to make lives better for all Canadians, because we're hearing of some significant challenges. I think one of the things we can agree on—we may not agree on it politically, and we have different ideas of how to get there—is that we want the situation for families across this country to be better tomorrow than it is today. To do that, we have to take a look at what's being done and what needs to be done.


When we take a look at what the federal government has done at this point, we've got some of the best researchers in the world—world-renowned researchers—leading the way. There's Steve Scherer, for example, in Toronto, and Lonnie Swaigenbaum. I think, Jim, you mentioned Susan Bryson. They're some of the world's best researchers. We've got the surveillance project under way. I think we can agree that was something that was overdue. But it's on track now and it's going to be an important part of understanding the puzzle that is autism in this country.


There are things like the opportunities fund, which doesn't just deal with people who have autism, but with vocational issues. We've increased funding for that opportunities fund to try to train people with different circumstances, different developmental challenges, so that they can have a better shot at getting jobs. We've introduced the RDSP, which, Jim, you mentioned. There are still significant challenges at the provincial level with treatment.


I think that's where I'm going to go with a question here, Marg. I'm going to come to you in a second to lay the context in your province.


In Ontario, there is 48% more money going to health care, plus 45% more funding going to social services, than six years ago, for example. What does the circumstance look like for families looking for treatment, looking for answers to their challenges health-wise, social services-wise, and education-wise in your province? Maybe describe some of those challenges. Have things been changing at all?


The Chair:
Who would like to take that question?


Ms. Spoelstra, go ahead.


Ms. Margaret Spoelstra:
There have been good things happening. In fact, we know what to do. I think that's the most important thing to say first off. We have access to the best information, the best research, and we have good clinicians who can help with services and supports in Ontario. The investments have been significant in the province, and we're grateful for that. Those are distributed across the nine regions. But what happens for families is they experience the system in pieces, and they have to constantly be cobbling together supports and services in a timely fashion for their kids when they need it.


I would say that the idea of seamless supports seems so elusive. The nature of autism is that it changes across the lifespan, so it's not a one-shot thing ever; it's multi-faceted. We need various ministries working together, so that the experience of families is not one where they're having to knock on 30 doors to get one answer for the situation they're facing today, as well as the situations that are going to continue to change across the lifespan. But we do need to invest more, because there are more kids.


As I was saying earlier in comments about those families in those early years, not receiving those services is so disheartening. When we say we want to support those caregivers, they need access to those services in a timely fashion, and they need a response to the nature of autism spectrum disorders as they are uniquely represented by each child, each adult. Then there's also caring for the caregiver. The parents bear an enormous burden in having to take the responsibility of being case managers, in addition to 20 other hats they wear on a given day.


I would also say they need additional supports to help them be families to their kids, to help them be effective in getting the services their children need, and in not having to pay out of pocket, which many families do. They go bankrupt in their efforts to get those services and supports and intervention strategies.


Hon. Mike Lake:
Is it fair to say...?


Time is up? Okay, no worries.


The Chair:
I'm sorry, our time is up. I've given you a little extra time, actually.


I'm going to thank the witnesses so much for coming today.


We are going to suspend for three minutes. Then we will go into the clause-by-clause and then to committee business.


There will be a three-minute suspension.

The Chair:
Could I reconvene the committee now and can we get this bill examined?


We are going to postpone the preamble, pursuant to Standing Order 75(1). We will postpone clause 1, which is the short title.


Does anyone want to speak on clause 2, or can we go straight to the question?


(Clause 2 agreed to)


The Chair: Shall the title pass?


Some hon. members: Agreed.


The Chair: Shall I report the bill to the House?


Some hon. members: Agreed.


The Chair: We are now going in camera for committee business. I would ask anyone who is not a member to please leave the room so we can continue with our business. Thank you.


[Proceedings continue in camera]

News from Medicare for Autism Now!

Check out the latest two extended interviews in our web-series: "Medicare's Orphans"

Episode 7: Stefan Marinoiu is a Toronto-area parent who came to Canada in 1980. In this powerful 26 minute interview, he describes the reality of living with a severely autistic child who has been denied treatment as a result of government's wilful neglect. He makes a clear-eyed assessment of today's politicians and make a compelling argument for why parents must be politically active.

Episode 8: Shelley Davis is a US based Behavioural Consultant who has consulted to BC families for the last 15 years. She is also a practicing attorney. She reviews two US laws - the IDEA (Individuals with Disabilities Education Act) and the ADA (Americans with Disabilities Act) and how determined parent advocacy attained both. She describes the stark contrast in approach and delivery of autism treatment between California and BC. In her experience the only reason for improvements in BC was the result of the work and advocacy done by focused and dedicated parents. However, in her view, we're still at the very beginning of the process. We need to continue to work together and have high expectations because it is so easy for children with autism to be pushed aside.

See the film and web-series at: www.medicareforautismnow.org Share us on Facebook

Andrew:

I never knew your whole story and what a •••• McGuilty (love that name btw) was. It makes me so angry when I hear about the abuse so many families and kids in Canada have been through. Sounds so similiar to B.C. in so many ways, and the way the Liberals screwed our kids over here. Course the NDP screwed them over first, the Liberals just lied and said they wouldn't.

Glad you got a good night's sleep.

Barbara Rodrigues

Hi Folks,

Yesterday was one of those special days. I was watching The National and about to fall asleep when Peter Mansbridge announced that Ontario Premier Dalton McGuilty surprised his caucus by announcing his resignation. I have not slept so well in a long time. Wow! What a relief!

McGuilty happens to be my MPP. He became Premier of Ontario in late 2003, just before my son was diagnosed. During the election campaign a mother of child with autism asked each party leader what they would do for autism. The Preschool Autism Program at the time had an age six cut off. He stated in writing that it was discrimination and he would do away with it. Well, when he became Premier, he appointed a Minister who conducted a "program review". Our son was diagnosed at that time and we were on waiting lists. Oh boy, did we want to see some serious revamping of the program. Well, when the review report came out, the community was generally disappointed. We were still on a waiting list. Then the Deskin/Wynberg case was snaking its way through the courts on precisely the same issue of the discriminatory age-based cutoff. Did McGuilty tell his lawyers to stop fighting the case and make the corresponding changes to the program. Nope. Instead, the judge issued a decision calling age-based cutoff to be a discriminatory provision and ruled it unconstitutional, etc. It reminded me of Martin Luther King: "Free at last! Free at last! Thank God Almighty! I'm free at last!" But then what did McGuilty do? The very next business day he announced that the government would appeal the decision. And they won at the Court of Appeal. However, the new Minister said that even though they could legally cut kids off at age six, they would not do so. Really? Newfound kindness and compassion? Hardly. They simply found other reasons to kick kids out of the program. Our kid was on a waiting list for two years while we pursued a home-based program. When we got funding, we provided them with reports of the program. At five and a half they tested our son, using words that were not even in his program, and then informed us that they they cutting off funding when he turned six. So we raised a fuss and were called to a meeting to be told that once again, out of the kindness of their hearts, they would extend funding for another six months...but that's it! Our six year old was not worth investing one single more cent beyond that. Sort of like Cinderella turning into a pumpkin at midnight because she could not find her slipper or prince or something. Imagine a society where a six year old fails grade one and is then told that society is kicking him out of school. For good. What a disgrace. While we were on the waiting list the Ontario Auditor General issued a report stating that there were 1,000 kids on the waiting list, and over $16 million or so of unspent money in the program. Whenever I hear them talk about "lack of resources" I don't believe it. Of course, McGuilty won the PR war by announcing new spending on autism programs (which should "solve the problem"). But a little later we demonstrated in front of his constituency office because Freedom of Information Act requests resulted in information being released that unspent money in the autism programs had been diverted to other programs. A total of over $50 million at the time. They did not issue press releases to announce those monetary diversions. Not "newsworthy", I suppose? Those are just some of the episodes that I recall from McGuilty's tenure as Premier.
Yeah, McGuilty is leaving. I had a good night's sleep. I hope he fades as far away as possible. And I hope he takes his brother (my MP) with him. I'll never forget in 2004 when his brother ran his election campaign with signs all over the place saying he would fight for healthcare. So I met him after his election in his office and asked him to champion the cause of getting healthcare for kids with autism. He just shook his head and said "no". The only thing that worries me is that there are some media outlets carrying stories about the possibility of McGuilty running for the leadership of the Liberals and speculating that he would win it. Oh Lord! Save us!

Medicare for Autism Now! has just released Episode 6 of "Medicare's Orphans" web-series featuring experienced advocate and friend to many on this board, Laurie Guerra. She is a parent, advocate and director of the Autism Society of BC. In her 15 minute interview, she describes the impact of delays in diagnosis and lack of accurate treatment information. Her main messages to parents are not to be complacent about funding, it could be gone with a stroke of a pen – and how advocacy is essential until treatment is universally accessible.

Go to: www.medicareforautismnow.org to watch the web-series and the full documentary, "Medicare's Orphans" Forward, share etc. with others

If you would like to know more about "Medicare's Orphans" and about those who produced and participated in this documentary including, Laurie, contact your local autism parent group and request this be an agenda item at a monthly meeting. Based on availability, we would be happy to discuss the documentary and its purposes.

Dr. Glen Davies, well-known and respected by many who read this board is featured in the recently released Episode 5 of Medicare's Orphans web-series.

"Dr. Davies is a clinical child psychologist who has practiced in the Vancouver area for over 25 years. Today, over two-thirds of the children seen in his clinic are on the autism spectrum. In his 16 minute interview, Dr. Davies comments upon the dramatic increase in autism diagnosis over the last two decades. He discusses the transformational impact of ABA treatment, as well as the relative costs of not providing treatment - to autistic children, their families and society at large." "Autism is a huge public health concern...we would not tolerate this (lack of treatment funding) if it was cancer...our budgets for autism are arbitrarily capped..."

To see the documentary film, Medicare's Orphans and the first 5 episodes of the web-series, including Dr. Davies interview, go to:
www.medicareforautismnow.org They can also be seen on Facebook and YouTube. Please forward the link to others.

Long-time Vancouver paediatrician, Dr. Melvin DeLevie's interview is now featured in Episode 3 of Medicare for Autism Now's web-series - Medicare's Orphans.

Dr. DeLevie has extensive experience dealing with children with autism. He is well known to many BC families for his tireless work on behalf of their children. His 20 minute interview is a powerful indictment of Canada's archaic approach to the treatment of autism which is in stark contrast to the treatment of children with any other disease or disorder. He gives examples of why social services personnel are ill-equipped to deal with what is in-fact a medical condition. He eloquently expresses his frustration with the "people in charge" who are both "blind and deaf" toward what he terms the "lost children".

To watch his interview, go to: www.medicareforautismnow.org and click on episode 3 Watch it, share it, forward it to your local MLA and MP. ACT NOW!

Go to www.medicareforautismnow.org to watch Harold Doherty's featured interview. Watch, learn,share and ACT!

"There were a pretty hard-core group of parents who wouldn't take NO for an answer...." quote from Harold Doherty's feature length interview from "Medicare's Orphans" documentary. In his 24 minute interview, experienced and accomplished advocate from New Brunswick, Harold Doherty discusses the power and essential need for effective parent advocacy. Author of "Facing Autism in New Brunswick" blog, Harold describes how "parents should not expect governments to take action unless they are pushed to take action..." Also included is Harold's well-founded critique of the neurodiversity movement.Harold's interview is the second episode of Medicare for Autism Now's web series.

Go to www.medicareforautismnow.org to watch Harold's interview and "Medicare's Orphans" documentary. Share it with your friends, host a screening party, order a DVD. Go to the "agenda for action" page and learn how to engage your MLA and MP. Need more help? Put together a group and contact us about an advocacy workshop.
"By anyone's measure, we have an autism crisis in Canada...it's time to get off your butts and do something.."....indeed it is!

News from Medicare for Autism Now!

"Whose worthy of receiving healthcare in Canada? Why are kids with autism excluded? Why should Canadians not affected with autism care? What can be done? Jean Lewis,co-founder of Medicare for Autism Now! and co-producer of Medicare's Orphans discusses these questions and much more in this 40 minute in-depth interview."

This is the first episode in a series of 12 extended interviews with some of the participants in documentary film, Medicare's Orphans, which is now available on DVD.

Watch the documentary, watch episode one, sign the on-line petition, check-out the suggestions in the "agenda for action" page - and - take action! www.medicareforautismnow.org

The current controversy surrounding CLBC is another example of continuing ineptitude on the part of government in providing services to people with disabilities. It reinforces the central message of Medicare's Orphans, which is you are not a victim - you are a voter. Get involved, take action, make a difference.

Hi featers,
It's that time of year again, when I decide to take up my battle with the Provincial Government over the discrimination that our kids experience with regards to the home owners grant. This is not a huge grant, but it can save our families about $100 - $250 per year if we get it. Here is the problem. The grant is only given if the person with the disability has a PHYSICAL disability. It is not considered for our children and adults who need constant one-on-one support. I once wrote to them to point out this discrimination and this is what they wrote back:

"Eligibility for the additional grant due to a disability is directed to property owners, or relatives permanently living in the home, who have a permanent physical or mental disability, which is sufficiently severe as to result in a considerable decrease or loss of mobility".

In other words, you need a physical disability to get the grant.

I have written to my MLA a number of times and to no avail. I am wondering if anyone would like to start up a class action lawsuit, or look into going to the small claims court for this. I do not have time to start up something, but would be happy to join if anyone else would like to organize.

Any volunteers?

Hi Folks,

I was about to doze off in bed this evening while watching the TV Ontario program "The Agenda" when suddenly they spoke about autism awareness and how they interviewed Mike Lake and how he gave an "unforgettable speech" in the House of Commons on World Autism Awareness, etc. In fact, I read the short speech he gave and I found it to be quite forgettable.

At the risk of being accused of total political incorrectness, I got out of bed and sent the producers at TV Ontario the following email:

As a father of a child with autism I am stunned by how the media completely abandon their usual inquisitive style whenever dealing with Mike Lake and his son. When Mike Lake was first elected I went to see him to ask him for his help in the development of a national autism strategy so that Canadians with autism could get treatment, specifically the only scientifically proven treatment to date (IBI/ABA therapy), covered by Medicare. There is a serious problem in this country when it comes to discrimination against autism under Medicare. My wife and I spent $40,000 in the private sector in the first year following my son's diagnosis because not one single province in this country provides autism treatment under Medicare and here in Ottawa we were on a two-year waiting list to get help from the ministry of social services. Would Mike Lake help our community to address this problem? No. He worked for the Oilers when his son was diagnosed and told me that a professional hockey player cut him a cheque for $10,000. Unfortunately, not every parent of a kid with autism has such generous and rich friends. When a Private Members' Bill calling on the Minister of Health to work with the provinces to develop a National Autism Strategy was debated and voted on in the House of Commons, he voted against it along with his party and the Bloc so that the Bill would die even before it was examined by the Health Committee. He also wrote a three page open letter explaining why he voted against it (about his view that this was "bad law" and unconstitutional, etc). How can one explain the tories running an election campaign calling for a National Cancer Strategy and developing a National Spinal Cord Rehabilitation Research Strategy and going to court to seek the right to establish a national securities regulator when it suits them, but when it comes to treating kids with autism, they can't do anything because "that's provincial". The feds own the Canada Health Act and negotiate health accords with the provinces in which billions of dollars are transferred in exchanged for specified standards for medical services, except autism. I gave Mike Lake a petition to table in Parliament calling for Medicare coverage for autism treatment and a national autism strategy. Although it was tabled by dozens of MPs and Senators in Parliamanet, Mike Lake is the only MP that I know of who refused to table it. He took one look at it and gave it back to me. I was shocked. But then I learned something about Mike Lake's views and knowledge about autism. When I met with him I brought to his attention that the US-based CDC issued a report stating that the prevalence rate was 1 in 150 and called it a national public health crisis. He was unfamliar with that figure, but when I stated it, he immediately replied without any hesitation "I don't believe that!". This week the CDC issued a new study indicating that the incidence rate is now 1 in 88. Does Mr. Lake dismiss that figure too? His annual speeches about his son strike me as missing the mark. As an MP in the House of Commons his speeches should be about what he and his party and the government are going to do to help Canadians. When he spends one minute every year on World Autism Awareness Day speaking about his son and ignores the public policy questions (when I read the text in Hansard he did not say a word about the public policy issues), he misses an opportunity to be helpful. At the same time, he demonstrates his opportunism. Did you know that he and his party were against the private members' bill to declare a Canadian Autism Awareness Day? Apparently he had some concerns with some wording in the preamble of the bill. Something about prevalence rates and the fact that autism treatment is not covered by Medicare in Canada. These are the real issues that need to be addressed when determining whether a politician is helpful or not towards those with autism in Canada. While Mike Lake has managed to convince a number of journalists in the media into thiniking that he is a champion for autism on Parliament Hill because he brings his son to photo opportunities and talks about him lovingly like any parent talks about their child, it is surprising that few have actually challenged him with the question: and what have you done to help parents of autistic kids get access to the desperately needed treatment for their loved ones? One journalist interviewed him a few years ago and told me afterwards "He did not run on autism". That was clear to some of us shortly after his arrival in Ottawa. Of course we hope one day there will be a change in approach and the adoption of some meaningful, concrete and helpful action by the federal government. That day has not yet arrived.

Hi Folks,

I know this may sound repetitive, but...the incidence rate is up, the government announced the same thing again (sort of), and we have an opportunity to raise more awareness, etc.

A few years ago a Conservative MP was elected in Alberta by the name of Mike Lake. He has a child with autism. I met with him shortly after his arrival in Ottawa and presented him with the petition calling for Medicare for Autism Now (the one that was tabled in Parliament about 88 times). He is the only MP that I ever met who refused to table it. I remember being really surprised when he gave it back to me and said he would not table it. Also during that conversation I remember bringing to his attention that the CDC says the incidence rate of ASDs is 1 in 150. He flatly stated "I don't believe that".

Well, today the CDC says the incidence rate is 1 in 88.
http://www.cdc.gov/mmwr/preview/mmwrhtml/ss6103a1.htm?s_cid=ss6103a1_w

Wonder whether he will summarily dismiss this figure too?

Wonder whether the PHAC and Health Canada are still dithering over the (im)possiblity of gathering statistics so that public health policy could be based on some Canadian facts?

However, something was announced this week by the Feds in the realm of autism (notwithtanding their historic claim that "it's provincial"). But did the Feds not announce such funding for a similar chair back in 2007? And did that funding project not get cancelled when they could not find a candidate? So is this old wine in a new bottle being presented as a new unprecedented initiative that is moving the yardstick on Fed activity, or what? Obviously something is better than nothing, but when they refer to "continually advancing", they rarely balance it out with a corresponding reflection of the backward steps that have been taken. In Ontario, Premier Dalton McGuinty's government made plenty of announcements years ago that new monies were being allocated to autism programs. Then Access to Information Act requests revealed that millions had been diverted to other programs. No press releases were issued to announce the autism moneies diversions and reductions.

Anyways, World Autism Awareness Day is coming up in early April. Expect some MPs (perhaps even Mike Lake?) to hand out some autism pins at another "feel good" cocktail reception on the Hill.


News Release


Harper Government invests in autism treatment and care

For immediate release

Ottawa, Ontario (March 27, 2012) –The Honourable Leona Aglukkaq, Minister of Health, today announced funding for the Chair in Autism Spectrum Disorders (ASD) Treatment and Care Research Program. The purpose of the Chair is to support a new investigator bringing innovative approaches to the treatment and/or care of autism spectrum disorders. The CIHR Institute of Neurosciences, Mental Health and Addiction in partnership with Autism Speaks Canada, the Canadian Autism Spectrum Disorders Alliance, Health Canada, NeuroDevNet and the Sinneave Family Foundation are offering this funding research opportunity.

“Our government is committed to continuously advancing research in the field of autism,” said Minister Aglukkaq. “We are pleased to partner with Canadian organizations and believe it will help stimulate research and, ultimately, improve the health of people with autism.”

The announcement took place at the Children’s Hospital of Eastern Ontario (CHEO) Autism Intervention Program Offices in Ottawa. The Minister was joined by Member of Parliament Mike Lake, and Parliamentary Secretary Dr. Colin Carrie, both of whom have children with forms of autism. Also joining the Minister was Scientific Director of the CHEO Research Institute Dr. Martin Osmond and Scientific Director of NeuroDevNet Dan Goldowitz.

“Significant gaps exist in applied research that focuses on autism diagnosis, treatment and care,” said Dr. Goldowitz. “We hope that this Chair opportunity will attract interest from the best science minds across the globe who see the potential that this position will provide in making a real difference in the lives of children, youth, adults and their families who live with autism every day.”

Investigators working in Canada and those willing to relocate to a Canadian research institution are eligible for the Chair. Investigators not currently conducting research in the field of autism spectrum disorders must demonstrate how they would bring new approaches to the treatment and/or care of individuals with autism spectrum disorders. The Chair’s application form is available on CIHR’s website.

- 30 -

Further information:

Cailin Rodgers, Office of the Honourable Leona Agluakkaq, 613-957-0200

David Coulombe, Canadian Institutes of Health Research, 613-941-4563


The Canadian Institutes of Health Research (CIHR) is the Government of Canada’s health research investment agency. CIHR’s mission is to create new scientific knowledge and to enable its translation into improved health, more effective health services and products, and a strengthened Canadian health care system. Composed of 13 Institutes, CIHR provides leadership and support to more than 14,100 health researchers and trainees across Canada.

I was told today by the Assistant Deputy Minister of Children and Family that parents are very happy with the Invoice Payment Option. Just to be sure that this is in fact the case I would like to do a survey to ask individual families. Could you please email me @ bradrox@shaw.ca to let me know if you are happy with the Autism Funding Unit and the current system that is in place.

Thanks
Roxanne Black

From the ABA Support Network:


Tonight's Tax Talk will take place at 1630 154th Street. This is in a condo complex called Carlton Court. The building is on the North East corner of 16th Ave and 154th Street (or Best on the White Rock side). There is limited parking, so try to carpool if possible. Parking is available on 16A Avenue in the 15400 block (east) and 17th Ave in the 15300 block (west). BE CAREFUL of "no parking" and 1 hour limit parking signs and fire hydrants.
They love to ticket here because it's close to Peace Arch Hospital.

Come to the front entrance of the Condo and Nancy will let you in.

There are a few spots left please rsvp to dione@abasupportnetwork.com if you haven't already and you would like to attend.

The ABA Support Network
Presents

“Autism and Taxes”
With special Guest – Dave Taylor, Parent

7-9pm, Tuesday January 31, 2012

Dave Taylor is the parent of a child with autism and has been administering a home based ABA program for 7 years. Dave has done extensive research into the financial side of managing an ABA team and has gathered information on all kinds of issues from his own experiences and from feedback from other parents.

Some of the topics that Dave will cover during this meeting are:

• Disability Tax Credit
• Medical Expenses
• Federal tax credits and tips for tax time

We would also like to encourage parents to bring their own experiences and questions to share.

Meeting information:

Date: Tuesday January 31, 2012
Time: 7-9pm
Location: Carlton Court Amenities Room
1630-154 Street, Surrey (White Rock)
RSVP: dione@abasupportnetwork.com *note* space is limited

Hi Everyone!
I'd like to thank Andrew for all his efforts. I really do appreciate it and have great respect for Andrew's tenacity!

The more effective you are, the less likely the system will be to award you anything! This conclusion is clear from 1) the recipient of the Order, 2) Andrew's original letter, and 3) the heavily edited version that was published.

The fact that we did the right thing is the greatest reward for me irrespective of how things turned out.

Btw, my e-mail has not changed: skfreeman@skfbooks.com

You can also reach me through my blog:

www.autismpundit.com

What a joke - proves how scared they still are of Dr. Sabrina Freeman. Idiots.

Thanks for posting Andrew.

Barbara

The Globe published a heavily-edited version of the letter.

What readers think

Jan. 2: Letters to the editor

From Monday's Globe and Mail
Published Monday, Jan. 02, 2012 2:00AM EST

Order, please

While your published list of new recipients of the Order of Canada is interesting (Canada’s Honor Roll – Dec. 31), the publication of a list of people who were considered but not given the Order might be even more revealing and informative.

I am thinking of a person who has done outstanding work to help the disabled but was not named to the Order. I trust that the Canadian establishment and elite are comforted and reassured knowing that another former prime minister has secured his promotion to “Companion” of the Order of Canada.

Andrew Kavchak, Ottawa

Thank you Andrew Kavchak for sharing the letter you sent to The Globe and Mail.
Sabrina Freeman is the single reason that my child and thousands of others across this country, are in bonafide treatment programs. Dr. Freeman founded FEATBC in 1996. Sabrina had the clear, concise, single message, "Applied Behaviour Analysis is the only scientifically, data-backed treatment for Autism."
Sabrina Freeman educated myself, and countless other parents. She, along with a small group of brave FEATBC parents, spearheaded the Auton and Hewko cases.
Her blog, "Autism Pundit" is a must read, as are her books listed at the right hand side of her blog.
My wishes for this New Year is:
1. That every parent educate themselves about Autism treatement and that every child with a diagnosis of Autism get started in an ABA program immediately.
2. That the efforts of Medicare for Autism Now! (thank you to the founders: Jean Lewis and David Marley) are successful in getting Applied Behaviour Analysis covered under Medicare.
3. That every parent,ABA therapist, Grandparent, neighbour, Canadian citizen that cares about children with Autism, learn from the recently released film, "Medicare's Orphans" (on the Medicare for Autism Now! website - it is free)that there is no room for complacency. Raise your collective voices to lobby the politicians at all levels because we need Medicare for Autism Now!

Beverley Sharpe
Proud parent of Miss A
Proud FEATBC member since 1997.

Well said Andrew! Sabrina is still a part of this list. She also has a new blog which you would DEFINITELY enjoy......

http://autismpundit.com/files/c711821302c3d2f65804981179dd5ec9-98.html

Barbara Rodrigues

Hi Folks,

Today the Globe and Mail carried a front page article about the Order of Canada called "How do you earn one of these?". It contained interviews with some of the newly-announced recipients as well as a list of all the people who were just awarded the medal. There are three categories, companion, officer and member.

In the member category, I saw the name of Margaret Spoelstra, the head of the Autism Society of Ontario. As a parent of a child with autism in Ontario, I contacted Margaret Spoelstra in January 2004, shortly after my son's diagnosis. While she said many comforting words over the phone, she did not suggest any meaningful and concrete steps and certainly gave me no reason to hope. We were on waiting lists and she told me she was sorry to hear that. In fact, she even expressed surprise that we were on a waiting list for respite funding, even though I subsequently found out that such waiting lists were common. Despite her claim that the Autism Society of Ontario is the voice of the community, I subsequently read her submissions to the department of Finance at budget time and found them to be seriously lacking in substance and offering a very poor reflecting of the desperate situation that many families in the community faced. Accordingly, I did not renew my membership in her organization and have been challenged to find any justification to join again.

However, I just sent a letter to the editor of the Globe and Mail that I wanted to share with you. If any of you have Dr. Freeman's email, please forward a copy to her. Thank you. Happy new year everyone!

Andrew Kavchak (Ottawa)

Dear Editors of the Globe and Mail,

In addition to interviewing victorious recipients of the politically-charged Order of Canada ("How do you earn one of these?", Dec 31, 2011), I would be interested in knowing what your investigative reporters could uncover about the process of awarding these symbolic tokens and how (dys)functional and (in)effective the Governor-General's bureaucracy is. While your published list of new recipients is interesting, the publication of a list of high profile rejects might be even more revealing and informative.

Having had a son diagnosed with autism in late 2003 my family and I received an instant and lengthy hands-on course in the deficiencies of Canadian healthcare, education and social service "programs". It was a shocking eye-opener. My family spent $40,000 in the private sector in the first year of autism treatment without even a few crumbs of financial assistance to pay for respite care. However, we were hardly the first family to discover that Medicare discriminated against autism by not providing any public health coverage for treatment. The more I researched the autism treatments and public policy, the more my attention was directed to a remarkable lady in Vancouver by the name of Dr. Sabrina Freeman who struck me as being the foremost advocate for early intervention autism treatment. She not only wrote books on how to teach kids with autism to speak, she was also a leader in the creation of the Families for Early Autism Treatment (FEAT) of B.C. and most importantly, was a critical team member in the class action "Auton" lawsuit against the provincial government. While the courts of B.C. found the lack of autism treatment in Medicare to be a violation of the equality rights in the Charter, the case was appealed to the Supreme Court of Canada (which overturned the appeal courts' decision). It was there, while demonstrating outside the Supreme Court of Canada building during the hearings in June 2004, that I had the pleasure of meeting Dr. Freeman whom I can only describe as a hero. It was then that I decided to nominate her for an Order of Canada. However, nothing would prepare me for the frustration and disbelief I subsequently encountered with the Order of Canada nomination process.

It took several years before the Governor General's staff informed me that Dr. Freeman had not accomplished enough in her lifetime to be considered for an Order of Canada (nonsense). However, I was told that she might be considered for a Meritorious Service Award. And now, seven years (going on eight) since making my initial nomination, I am still waiting for a final decision. I have contacted the GG's staff on an annual basis for updates and have been shocked at how they have repeatedly come up with "program review" excuses to explain delays lasting for years. Following the appointment of the current GG I immediately wrote to him to draw his attention to the fact that his award program was dysfunctional. I subsequently received a letter from a bureaucrat telling me "as you know, the program is under review"...again.

How many years does it take to determine whether a person is deserving of a symbolic token in recognition of outstanding work to help the disabled? Which other nominees who have struggled with incumbent powers to improve the lot of the disabled and disadvantaged have been denied recognition for their outstanding leadership and advocacy work? Notwithstanding this disgraceful mismanagement of what could otherwise be a cultural treasure, I trust that the Canadian establishment and elite are comforted and reassured knowing that another former Prime Minister has secured his promotion to "Companion" of the Order of Canada.

Your truly,

Andrew Kavchak

Holiday greetings to those of you running a bonafide, ABA treatment program for your children.

My daughter put every ornament on our Christmas tree by herself this year, correctly identifying each one. She participated in her school’s Christmas choir, singing Christmas Carols. She also participated in line-dancing at the Christmas dance on the last day of school before Christmas break.

My daughter is now 17 yrs. old. She has been in an ABA treatment program for 14 yrs. All of her achievements were due to the thousands of hours of one-on-one treatment. This treatment has enabled her to enjoy the Christmas activities that typically developing children enjoy.

I now look forward to Christmas morning, as my daughter has learned how to open presents, turn-take with gift-opening, and even clean up the wrappings after the gift-opening is finished.
My Behaviour Consultant, Miss Shelley Davis, specifically designed programs for each one of these achievements.

It is vital that this science-backed, peer-reviewed, bonafide treatment for Autism be covered by Medicare. Please take time this holiday season to view the film, “Medicare’s Orphans” on the Medicare for Autism Now! website.

Thank you to Jean Lewis and David Marley, founders of Medicare for Autism Now!, who spent 2 years on this film which chronicles the 14 years of advocacy, litigation in a succinct 42 minute documentary.

Sincerest thanks to Dr. Sabrina Freeman who founded FEATBC in 1996, bringing the message to Canada, that Autism treatment exists, it works, and it is called Applied Behaviour Analysis. Her blog, “Autism Pundit” is a must-read.

Beverley Sharpe
Proud parent of Miss A
FEATBC

Tomorrow, November 30th. - tune into Vancouver's CO-OP Radio 102.7FM and listen to Medicare for Autism Now! co-founders, Jean Lewis and David Marley discuss their recently released documentary, Medicare's Orphans - a film about the fight to get healthcare for children with autism in Canada. Watch the 42 minute film at: www.medicareforautismnow.org Leave a comment, sign the on-line petition and forward the link to others, requesting they do the same.

Want to host a screening/discussion party? Want to have us attend and talk to your group about why we made this film and what the next steps are? Contact us at mfanow@gmail.com

Thank you to all the Burnaby parents who responded to my post.

Elections in our school district are just around the corner and I want to reach as many ABA parents as possible with some important info. about the stand on education for our autistic children, by the candidates. PLEASE CONTACT ME at nobullyingkids@gmail.com

Our documentary film is finally done!

"Medicare's Orphans" - a film about getting healthcare for children with autism in Canada produced by Medicare for Autism Now! Society.

"Political activity is demonstrably effective...People who say otherwise ignore the history of our country." - Rev. Dr. Reg Stackhouse.

"For those parents who say they are too broke and too tired...you need to take your heart into your teeth and go on...and go on." - Stefan Marinoiu.

Please watch the film at www.medicareforautismnow.org leave your comments, like it and share it on Facebook, Twitter etc. Spread the word!

Hi Mike,
Thanks for the information. You are absolutely correct about the criteria in your post. They ran a phone interview with me and they did ask about certain things like whether the therapist had to bring materials with them and who would pay for those or about training to recruit them etc...
I did not know they would use it against us. We both know that every family running ABA provides on-the-job training according to the child's program, and buys material that is tailored for the child's specific needs.
We do have contracts with our therapists that we both sign and it states in our contract that the therapist is responsible for filing and paying their income tax but we dont mention about other deductions because we never put so much thought in it. We pay them by their invoice and that's it.
This may be opening the door for CRA to nail families like us who are so involved with their problems in life and don't see the technical aspects of these things the way CRA is expecting...we are not certified accountants or experts...we are simply trying to save our children in day to day battle and with our focus elsewhere....
Just imagine if they want to target us for every single therapists we have had!!!
Any advise??
Thanks again,

Mehdi

This is in regards to Mehdi's post last week, who received a ruling that an old therapist was considered an employee.

I have some experience in the past with the CRA and the fine line between self-empolyed and employee. As far as the government is concerned, this is a grey area and there are certain factors that they consider when making a ruling.

It is very important that all parents running an ABA program understand the conceptual differences between self-employed and employee. You need to remember that your therapists and consultants are independent contractors; they are *not* your staff.

You as a parent should think of yourself as the one who is paying for the services of the contractor. I see lots of postings where families are looking to "hire" a new therapist for their team -- be careful that you don't think of it as though you are the employer bringing on a new recruit.

This link is the CRA's guide for determining employed vs self-employed: http://www.cra-arc.gc.ca/E/pub/tg/rc4110/rc4110-e.html

Some of the factors that contribute to the decision include:
* control
* tools & equipment
* financial risk
* opportunity for profit

I would also recommend families set up a contract with their therapists that both parties sign, so that the working relationship is understood by both sides. Pay particular attention to the aspect of "control" as described in the CRA link. For example, you should not stipulate that the therapist must provide services for a minimum length of time.

Consider this statement from the CRA guideline, which attempts to clarify the type of relationship that a self-employed worker should have with his/her payer:

"The working relationship between the payer and the worker does not present a degree of continuity, loyalty, security, subordination, or integration, all of which are generally associated with an employer-employee relationship."

-- Mike

Hello all,

I am asking this question from all of you out there and if there is anyone out there who have had experience in this regard, I appreciate their comments.

I have already checked the website "Autism Funding in BC" but there was nothing that could help me out with this case!

we are being targeted by the CRA. Last month, we were being questioned about an old therapist that left us in 2008. They would not tell us much about their investigation ( they called it phone interview) but wanted to know what was the nature of our therapist employment and we told them how it works out based on paying them by the hour in full rate via invoice and that we have contracts in place that stresses on the responsibility of the therapist on their income tax and deductions.
Last week we received a letter from the ruling officer that had ruled the therapist was deemed an employee and that under the Pension Act, her employment was pensionable as well as Insurable so we are on the hook for paying her pension and EI dues!!!!!
My question is what is next in line for families like us??
As far as I am aware, most of the families pay their therapists in the same fashion, am I wrong??

If I am correct, then we need to address this at large otherwise we will be liable for every single therapist we have had so far..you do the math!!

Regards,

MH

Meet Medicare for Autism Now co-founders, Jean Lewis and David Marley, along with broadcast journalist, Bill Good, discuss some of the topics featured in the documentary, "Medicare's Orphans" now scheduled for release in late October. All three live in Vancouver, Canada.

www.medicareforautismnow.org

This film exposes painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and equality into serious question.

Please share this link with as many others as possible and ask they do the same. Be sure to send it to your MP and MLA.

www.medicareforautismnow.org

Meet Stefan, Bernadette, Lia and Simon Marinoiu. They live in suburban Toronto, Canada. Simon has autism and no longer lives with his family. His devastating situation represents the fate of many autistic children in Canada who are being denied effective treatment. Simon and his family are featured in the just released third trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in October. www.medicareforautismnow.org


The film chronicles the stories of a number of families with autistic children from across Canada, each share the same problem - lack of access to effective autism treatment (ABA/IBI) via our "universal" health care system.

The film exposes some painful truths about who gets access to health care in Canada, the refusal to act by Canadian governments, both federal and provincial, and the Supreme Court of Canada's failure to protect our childrens' Charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children, to move the cause forward, and to end health care discrimination in Canada in this generation.

To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to: www.medicareforautismnow.org

Please forward this link, post it to your Facebook walls, and ask others to do the same. Also - very important - send it to your MLA and MP.

Thank you for your support.

Jean

Meet Laurie Guerra and her son, Wesley Romey. Laurie is a board member of the Autism Society of BC. They live in suburban Vancouver and are featured in the just released second trailer advertising Medicare for Autism Now's upcoming documentary, Medicare's Orphans, scheduled for release in mid-September.

The film chronicles the stories of a number of families across Canada, each share the same problem as every Canadian parent with a child with autism - access to effective autism treatment (ABA/IBI)via our "universal" health care system. The film exposes some painful truths about who gets access to health care in Canada, the Canadian governments, both provincial and federal refusal to act, the Supreme Court of Canada's failure to protect our childrens' charter rights, all of which rightfully brings Canada's reputation for fairness and human rights into serious question.

This film will be significant to both Canadian parents of children with autism as well as those living in other countries who live under the false assumption that Canada is a kinder and gentler place for people with disabilites. The film will also provide examples of what effective advocacy really is, what it has already achieved and what parents/supporters need to do in order to protect the gains others have made on behalf of their children and what they need to do to move the cause forward and end health care discrimination in Canada in this generation.

Please share this trailer with others using any means available.

Stay tuned for our next trailer where you'll meet the Marinoiu family from Scarborough, Ontario.

To learn the history, the gains, the goals, and how to get involved in the autism treatment movement in Canada, go to:
www.medicareforautismnow.org

Your child's future depends on you.

Take a few moments to watch the first of four trailers for the upcoming Medicare for Autism Now! documentary which will be released in mid-September.
Watch it at: www.medicareforautismnow.org Spread the word, share with your family and friends, Facebook etc. etc.

If anyone has any information you could give to this Dad, or any help you could offer, please contact him at the email below.


Thanks,

Jen


My name is Derek I am a single father of three wonderful young children, aged 9, 10 and 11; my youngest two have both been diagnosed with severe autism. Though a constant and challenging struggle, I have done my best to protect and nurture them, as I love them so much and have dedicated my life to their achievement of happiness. My youngest child ...is a bright and beautiful little spitfire named Ayn. She has and is blossoming so well here at home and has come so far to overcome her obvious disability, she does however continue to struggle and outburst when in other environments, particularly at school. Ayn is naive and unaware of the dangers that exist in the world at large, so when on Sunday she escaped the backyard we were very worried for her safety. With each passing moment the likelihood that something terrible had happened increased, as Ayn should stand out from other children easily and should have been quickly spotted. Fortunately Ayn was discovered two doors down playing in a neighbours backyard, the neighbour had taken an afternoon nap which provided Ayn with the ability to play undisturbed. The challenges I have faced in caring for my daughter have been encompassing and life altering, these challenges are very dynamic and new challenges arise as fast as the old one depart. Now with her discovery of the neighbours nearby trampoline and pool, she will undoubtedly seek to return there, vigilance will be required to face this new found challenge, but it is one which I must now face just as I have with each prior challenge and as i would have to with our future challenges as well. As it stands today I may never get that opportunity. This morning two workers from CPS arrived at my home to request that I "voluntarily" give Ayn over to them (she was at school at the time), if I refused they would simply coercively remove her. There should be no illusions here when someone approaches you and says "give me your child or i'm taking her" you should not pretend that any such choice would be done "voluntarily". They do not argue that she was abused, they do not argue that she was unnurtured, they simply say that as a single father I have an overwhelming amount of responsibilty and workload, and that Ayn's naivity renders her a danger to herself, and due to me having so much to deal with they should remove her in effect to lighten my workload. It is not argued that Ayn was thriving here, it was not argued that Ayn was failing to improve at home, but that her behaviour was self endangering. My little girl is autistic, I am aware that she does not understand the dangers that lurk, I love her and I protect her, when Ayn has a tantrum at school it is me they either call in to calm her or send her home to, when she is injured it is to me whom she turns because she "needs a bandage". The greatest successes this little girl has had were nurtured in the home, she loves it here, she loves her brothers and she loves her Dad, please help me get my little girl back.

I would be forever in your debt,

Derek

iconoclast_ensues@yahoo.com


http://www.facebook.com/home.php?sk=group_152278868178942&ap=1

And the latest round of attempts at legislated reasonableness in Ottawa....


You can follow the Bills’ progress through “LegisInfo” on the Parl.gc.ca website:


Bill C-218:

http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5079448



Bill C-219:

http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5080253


Here is the link for Mr. Thibeault ‘s MP profile:

http://www.parl.gc.ca/MembersOfParliament/ProfileMP.aspx?Key=128626&Language=E

This is not an isolated case. It happens everywhere every day.

Panorama BBC investigation into abuse at the Winterbourne View Care Home in Bristol:
http://www.youtube.com/watch?v=8yuPvUHsx1Y
http://www.youtube.com/watch?v=yLUKYtkRbMA
http://www.youtube.com/watch?v=-8w3AWTIbkc
http://www.youtube.com/watch?v=hjXlO4kk6Ms

CTV is interested in doing some reporting on challenges in accessing adult and child services, and is looking to interview families whose experiences can help tell these stories.

Moms On the Move needs you to contact them (address below) if you are willing to be interviewed, if your story has not previously been highlighted in the news media and if you fit the following profiles:

1) Children's services: Family under severe stress that has contemplated or been forced to place their child (age 0 - 19) in government care due to a lack of access to sufficient respite, early intervention, emergency short-term intensive care and/or other supports that could have helped them cope without giving up the child. CTV is particularly interested in talking to any family whose child has been placed in a group home so please pass this on if you know such a family.

2) Adult services: Family of an adult who has/is being denied a group home placement and/or other supports and/or who has been forced to move out of a group home and into home sharing against their wishes.

Please MOMs ASAP and I will connect you with CTV if it sounds like a good fit.

Being able to tell these personal stories is the most powerful way to explain to the public and to politicians the importance of adequate resources and effective programs to support families of adults with developmental disabilities and children & youth with special needs, so our sincere thanks in advance for the enormous contribution made by those who share their stories.

momsonthemove (at) telus (dot) net

Attention all parent-advocates:

The "Getting it Done" Advocacy workshop scheduled for this Saturday, April 30th by Medicare for Autism Now! is FULLY BOOKED. We are wait-listing people until Friday afternoon, in case of cancellations

Due to the exraordinary interest, we anticipate scheduling more workshops in the near future both in the lower mainland and Vancouver Island. Don't be disappointed - stay posted here and at www.medicareforautismnow.org for details on future workshops and other Medicare for Autism Now initiatives.

If you haven't already done so, please go to www.medicareforautismnow.org and sign the on-line petition. While you're there, check-out the message board to see who in this election campaign will publicly commit to supporting legislation to include autism treatment under Medicare. Share your own candidates' responses...but...do so before election day!

Questions about "Getting it Done" Advocacy workshop? Future workshops? Candidate responses? Other Medicare for Autism Now! initiatives?....contact us at mfanow@gmail.com

We're looking forward to a great workshop - see you all this Saturday!

Jean and David

Hello everyone,

Today, we launched our new and improved website - www.medicareforautismnow.org

One of the reasons we've done this now is to help and encourage parents and supporters to participate in the current federal election.

We agree with Get Your Vote On when they say, "The world is run by those who show up..."

To further the cause of Medicare coverage for science-based autism treatment (ABA/IBI) we suggest you:

1. Go to www.medicareforautsimnow.org click on Support Us and sign the on-line petition.

2. Click on Election 2011, find your candidates, ask them the question, and most importantly post their responses on the
our message board.

Please forward this email and website information along to others and, if you have one, "like it and share it" on your Facebook page.

Election day is three weeks from today - May 2nd. The time to take action is right now!

If you have any questions about canvassing candidates, please contact us at mfanow@gmail.com

Hello all FEATsters....

Tune into the Bill Good Show tomorrow, Monday, April 11th at 11:30 am to hear former FEAT director Jean Lewis and Medicare for Autism Now! director David Marley discuss their upcoming advocacy workshop - "Getting it Done!" scheduled for April 30th.

Topics to be discussed:
The "Getting it Done" advocacy workshop - why it's needed now - particularly the school segment, with the BCTF "focusing" on our kids in their upcoming contract negotiatons.

We will also discuss our upcoming documentary film, working titled:
"Medicare's Orphans - Canadians unworthy of treatment" Together with other topics, the film will chronicle the history of the autism treatment movement in BC and other parts of Canada.

And - What Medicare for Autism Now! is doing during this federal election, why you should participate, and how you can get involved in the campaign to get Medicare coverage for ABA.

It should be an interesting program. Tune into CKNW 980AM at 11:30 to join the discussion. The program can also be heard at a later time by going to their audio vault.

Please share this notice with your Facebook friends.

Attention all would-be advocates: parents, grandparents, family members, and friends: Do you want to know how to effectively advocate for your child? Are you tired of going in circles trying to get what your child needs? If so, this is a workshop you cannot afford to miss. Learn how to be an effective advocate for your child at any age and stage. Take this rare opportunity to learn effective advocacy skills from people who have been leaders in the autism advocacy movement for the last 15 years.

Circle the date and register today!

Attention all would-be advocates: parents, grandparents, family members, and friends: Do you want to know how to effectively advocate for your child? Are you tired of going in circles trying to get what your child needs? If so, this is a workshop you cannot afford to miss. Learn how to be an effective advocate for your child at any age and stage. Take this rare opportunity to learn effective advocacy skills from people who have been leaders in the autism advocacy movement for the last 15 years.

Circle the date and register today!

Beverley


Going in circles trying to get what your child needs?



If so – circle the date – Saturday, April 30th



The Medicare for Autism Now! Society presents:

“Getting it Done!”

…an “on-the-job * hands-on * this is how you do it”



Advocacy Workshop



Presenters: Jean Lewis and David Marley – founding directors of the Medicare for Autism Now! Society

and..

Guest speaker: Paul Caune, founder and executive director of Civil Rights Now!



Topics will include:



Advocacy 101



“It is not enough to be compassionate. You must act.”



As the parent of a special needs child, you must represent your child’s interests at school, in the community, everywhere. You cannot leave this job to others!

Advocacy is not a complex or mysterious process. It requires clarity, focus and persistence. It also requires certain skills:



This workshop will teach you how to:



· Gather facts, organize information, get ready

· Understand the Rules of the Game

· Plan and prepare for success

· Document, document, document

· Ask the right questions…listen to the answers

· Identify problems and propose solutions

· Drive the process



Advocacy at School



“A good education is the next best thing to a pushy mother.” Charles Schulz



This workshop will teach you how to:



· Become your child’s case manager

· Understand your school district’s Rules of the Game…who are the players and decision makers?

· Overcome objections and pitfalls

· Design an effective IEP

· Create effective paper trails, prepare documentation and letters

· Prepare for and manage school meetings

· Understand and use the Hewko decision





Autism treatment funding – securing its

future:



The landmark Auton decision is the only reason any autism funding exists today. This funding is in jeopardy because there is no statute law to protect it. The decision to continue funding or not can be made on a whim by provincial politicians.



· Learn the history of the fight to have medically necessary autism treatment universally accessible and covered by Medicare.

· Learn why we need a Canadians with Disabilites Act and an Individuals with Disabilities Education Act.

· Learn about recent and future initiatives to enshrine autism treatment under Medicare

· Learn why your children need you to get involved



We believe people learn best by “doing” rather than watching - so - be prepared to participate and receive on-the-job coaching. We promise you have never had this much fun in the school principal’s office. Several “guest players” will help us create some of the most common and troubling “school scenarios” for us to practice our newly-acquired advocacy skills.



Register today – don’t miss out, limited spaces available.



Saturday, April 30th _ 8:30 am to 3:30 pm

Burnaby Heritage Village Carousel Activity Room

6501 Deer Lake Avenue, Burnaby BC



$119.00 per person/$189.00 per couple – lunch included



*All proceeds will go to Medicare for Autism Now’s advocacy initiatives



To register: Email: mfanow@gmail.com or call 604-290-5737



About the presenters:



Jean Lewis:

Jean has been actively involved in the autism treatment movement since 1996, when her youngest son was diagnosed with autism. She became the co-founder and leading spokesperson for FEAT of BC (Families for Early Autism Treatment of BC), an organization dedicated to obtaining science-based autism treatment (ABA) within BC’s healthcare system. Jean was the co-chair of the litigation steering committee for Auton, a Canadian landmark Charter disability case. She performed the same role in Hewko, litigation aimed at ensuring children with autism gain equal access to BC’s education system.



In 2008, Jean co-founded the Medicare for Autism Now! Society, a non-partisan, national advocacy group focused on making science-based autism treatment (ABA) universally accessible and covered under Medicare. Since 1996, Jean has advised hundreds of parents about advocacy, treatment and education issues related to autism. She has presented at numerous rallies, workshops and conferences in BC, Ontario and the Maritimes. Jean is also a member of Civil Rights Now! board of directors.



David Marley:

David has spent his professional career as a trial lawyer, public policy analyst or senior political advisor at both the federal and provincial government levels. Since 1972, he has performed leading roles in over a dozen election campaigns in BC or Ontario. David’s political activity has involved organizing and presenting at many campaign schools and constituency association training sessions.



Throughout his career, he has served as a director of various not-for-profit organizations including, Medicare for Autism Now! and Civil Rights Now!, providing them with strategic counsel. In 2005 and 2008, David designed and helped implement a national political strategy for FEAT of BC and is a co-founder of the Medicare for Autism Now! Society.





Guest speaker: Paul Caune

Paul is the founder and executive director of Civil Rights Now! which is a non-partisan, all volunteer, not-for-profit society which advocates for public policy changes which will provide British Columbians with disabilities with equal access to the equality provisions of our Charter. He is also a board member of Medicare for Autism Now!

Attention all parents, grandparents, therapists and friends of children with Autism,
Dr. Sabrina Freeman's latest book The Complete Guide for Autism Treatments is up on Amazon in a Kindle e-reader edition. Dr. Foxx wrote the foreward and the rest is a careful and meticulous analysis of all Autism treatments.
The URL is:
http://tinyurl.com/46x3dao

This book carefully explains each purported treatment for Autism, gives you the facts and data, and is a must read book. Looking for a clear no-nonsense, fact-based booK? This is the one to read.
Don't forget to register a "like" for your facebook page when you read this book, it will let other parents know that this book is the one worth reading.

A big THANK YOU to Sabrina Freeman for doing this monumental task of putting the truth about Autism treatments to paper. Children are already benefitting from the huge amount of selfless work you did when you started FEATBC and you never stop giving to the cause of children and their medically necessary Autism treatment. This book is another great resource which tells the truth, and enables parents to make the informed choice to start the only treatment program that works: Applied Behaviour Analysis.

My daughter has learned how to speak, dress herself, prepare simple meals, and is responsible for many household chores. She is doing work experience at Old Navy, and is able to sit politely at a dinner table, eat appropriately with a knife and fork and so much more My daughter, and every single child in a bonafide ABA treatment program, is a shining example of ABA - this treatment works.

Hi Feat readers,

To those [like me] who missed the radio broadcast by Jean Lewis and David Marley on the upcoming workshop in April 30th; here's the website:

http://www.coopradio.org/station/archives/53

BTW, it is the one on March 11, 14:00, 2011

What touched me the most and saddenned me the most too...is what Jean said, "None has worked to get the government funding for these disabled children - but litigation and focused political action". [Which is the Auton Case]

Shashi, I understand how overwhelmed you are by the massive information we have out there. However, this workshop is one which is not to be missed.

In the radioclip, I was in tears when Jean said, "If today was your last day, what would you choose to do?"

Jean: "As a parent of a disabled child, if I knew today was my last day, I'd be completely comfortable in doing what I am doing - to expect healthcare discrimination end for children with disability [autism]."

Look forward to April.

Shashi, I'm glad you like that website. We are all thankful to the dad who put this website out there for us.

Another good website is www.abasupportnetwork.com. The ABA Support Network is a parent run organization devoted entirely to supporting parents setting up home based ABA programs and improving access to quality ABA in all aspect of our children' lives. We have monthly presentations and have organized neighbourhood network groups. You can join for free and receive our notices for any ABA events or news.

Thank you Nancy! That site was VERY helpful. Now onto the next issue. I'm in the process of hiring a Program Supervisor and wondering if anyone has worked with ABA Centre and has any positive/negative experiences to report. I'm totally new to this so welcome any feedback. Feel free to email me at shashimaharaj@hotmail.com if you prefer to remain anonymous.

Hi Sashi. I believe we got our doctor to fill out the form and I do not see why you would not be eligible. Also, you can backdate the disability credit to birth I think.

But I just want to pass on to you that there is great information on www.asdfunding.com regarding funding and tax issues in BC. Make sure to check it out.

Hi, our 7-year old son was just diagnosed with Asperger's a few weeks ago. We are indundated with information right now and just trying to figure out which path to do down. Right now we are doing our taxes and by reading this site, it seems we are eligible for the T2201 Disability Credit. Does anyone know if we qualify based on 'mental impairment' and whether we can have our psychologist complete the form?

http://www.globaltvbc.com/video/index.html?releasePID=5blq_WZpGzVkwCVmPctGJR_MejljZ6nq

Above is a link to a Global news clip last night regarding ongoing Autism Funding Problems. The direct funding option was taken away in September 2009 and the damage continues to spread.

This just highlights the fact that individuals with autism in this province have no legal rights when it comes to accessing health care. The government can and does change and take away funding on a whim and our kids are paying the price.

Christy needs to make good on her promise of change and putting families first. Making autism treatment universally accessible should be a priority for her please take a few minutes to contact her here and let her know that http://www.christyclark.ca/designate/

Dear FEAT readers,
Another year's already here and way into its 3rd month. Hope everyone is doing well.

I am truly excited that Jean's workshop is finally around the corner. I just could not wait till April to hear her speak again.

I once thought that I am all alone in this journey [autism] with my child - struggling and groping in the dark. But later on, I realize there are many parents who truly work hard for the benefit of all these children who cannot fend for themselves; and also always trying to support parents/families who are searching for truth. Definitely, Medicare for Autism NOW supercedes all.

Like David shared, there is a light in the dark.

Attention all FEATsters...

Jean Lewis and David Marley, founding directors of Medicare for Autism Now! will be guests on Vancouver's Community Living radio show - CFRA 102.7 FM. The interview airs tomorrow - Friday, March 11th at 2:00 pm. They will be discussing their upcoming, April 30th advocacy workshop - "Getting it Done!" You can listen on the radio or on-line.
For more info. about the workshop contact mfanow@gmail.com or call 604-290-5737

The following is from a parent who had to fight a funding denial by uninformed government people. I believe she is talking about classroom support funding from the Ministry of Education.

"Our son is six with ASD. He was diagnosed in July 2007 using the CARS method. We received funding from the government (for education) last year but not this year. We fought the result and found out that the education committee had erred in that they did not realize that CARS was valid until September 1, 2008 and the new rules requiring ADI-R should have grandfathered those that used CARS. My son also has received funding from the MCFD for many years. Please let members know that if they are in the same situation they can appeal and receive the funding."

Hi FEATers,

I'm located in Vancouver. My daughter has been covered for over 6 years. We've had a lot of trouble this year switching over to the new invoicing system: they decided to withhold 1/4 of our yearly funding because the switch-over paperwork wasn't sent in on time.

In fact, the initial paperwork was never sent to me, and when we owed our provider $, the ministry assured them that there was a "one-time" situation wherein we could pay the provider and be re-imbursed. Our provider passed this on to me, and I stupidly paid it in good faith. But now, that payment was made for sessions that occurred during the months that the gov't is refusing to fund us, and they are refusing to refund it. The woman that made the mistake admits to saying it, yet they won't pay us. It's infuriating, and I'm at my wits end.

I've had payments delayed before when I sent in paperwork late, but never in 6 years of doing this did I dream that they would actually remove the funding.

This makes me very angry. Very.

If anyone has any ideas of who I could talk to or how I could fight this, I'd really appreciate the help.

scissorhappy@shaw.ca

Most Sincerely,
{Cathy}

YOU can help bring quality ABA to all of BC. Please fill out the survey mentioned below:

MCFD is circulating a survey to assist in the development of a new Outreach Program for Young Children with ASD. Directors of featbc and the ABA Support Network have discussed ideas for this program, based on input from parents we have assisted throughout the province. We feel that there are two very important strategies to put in place in BC and we would like parents and professionals to focus on these two goals when filling out the survey:

1) To give scholarships to 5 ABA therapists in BC to complete a Masters degree in ABA with a focus in autism at a university where there is clinical supervision, with the proviso that these therapists return to work in the Interior BC, Northern BC or on Vancouver Island for 3 years. If all students attended the same program (such as the CABAS program at Teachers College Columbia University in New York City), then they could support each other upon returning home, and provide training to further increase capacity.

2) To establish a Masters and Doctorate ABA training program that includes clinical supervision at a university in BC.

If you would like to see what CABAS program is, you can go to www.cabas.com. CABAS is a comprehensive ABA training program based on the principles of VERBAL BEHAVIOUR.

We strongly recommend you complete the survey (see details below) and suggest the above recommendations,

Two surveys are also available NOW through the Autism Community
Training website http://www.actcommunity.net/
Or Direct Link:
Survey for Parents and Caregivers:
http://fluidsurveys.com/surveys/act-autism-community-training/popycasd-survey/
Survey for Autism Service Providers
http://fluidsurveys.com/surveys/act-autism-community-training/popycasd-service-providers

"Autism Therapists say payments 5 months late"

CBC News November 23, 2010

http://www.cbc.ca/canada/british-columbia/story/2010/11/23/bc-autism-payments-delayed.html

Please go to this story, recommend it and comment. More comments and recommendations will push it to the top of the news.

THANKS and PASS IT ON

Dione

Surrey, November 22, 2010

FOR IMMEDIATE RELEASE:

MCFD Payment Policies put Autistic Children in Jeopardy

Over 100 autism treatment service providers have complained they have not received payment for services within 30 days of invoicing the Autism Funding Unit (AFU) within the Ministry of Children and Family Development (MCFD). There is already a shortage of these service providers and those currently practicing are being forced to rethink their career choices. Families now risk losing current therapists and cannot attract new ones willing to put up with such financial uncertainty.

In September 2009 the Hon. Minister Mary Polak eliminated a Direct Funding option where parents could pay their service providers through a trust account. At that time, parents were assured that late payment problems would be dealt with. In the year that followed, these problems, in fact, worsened.

When contacted on October 4th, 2010 about the poorly managed AFU the Hon. Minister Mary Polak responded by saying "I know we've cleared the backlog and are continuing to work to solve other issues as they are raised by families and providers". However, featbc has confirmation that the problems are not resolved and service providers continue to not get paid within 30 days.

There are over 6,000 children in this province with Autism Spectrum Disorder who require therapy. Accessed through MCFD, this treatment will directly affect a child’s future. The difference between treatment and no treatment can also mean the difference between lifelong independence versus institutionalization.

Since autism treatment is not covered under Medicare, the amount of therapy a child receives depends directly on what families can afford to pay beyond the inadequate funding provided through MCFD. Despite its mandate to protect these children, current MCFD policies are actually interfering with access to treatment.

All attempts to communicate this to MCFD have fallen on deaf ears.

Last week British Columbians became painfully aware of what can happen to BC’s most vulnerable children when the Ministry for Child and Family Development drops the ball. MCFD indifference is allowing more of BC’s vulnerable children to fall through the cracks. Meanwhile, families trying to cope with the stress of autism are living nightmares every day as they struggle to keep therapists for their children.

-30-

(For further information contact Louise Witt at (604) 538-1370 or spokesperson@featbc.org)

Hello and attention everyone.

Civil Rights Now!, formerly Paladin Advocacy League, is a not-for-profit, 100% volunteer organization whose goals should be of interest to anyone with a child who has autism.
CRN advocates for public policy changes which will provide all Canadians with disabilities equal access to the equality provisions of our Charter.


VOTERS WITH DISABILITIES WANT CIVIL RIGHTS NOW!



Langley, BC, November 12,2010



The Langley Pos-Abilities Society is hosting a meeting for the public on Saturday, November 20, 1:30pm to 3:30pm, at the Langley Seniors Resource Centre, 20605-51B Avenue, to discuss the Civil Rights Now! campaign.



Zosia Ettenberg, the President of the Langley Pos-Abilities Society and the 2008 recipient of the Courage to Come Back Award, will be moderating the discussion with Civil Rights Now! Executive Director Paul Caune and his Board. “ I was horrified to find out how far behind BC’s legislation is compared to other Western countries,” said Ettenberg.



Civil Rights Now! is a not for profit, non-partisan, all volunteer society that thinks the way the government of BC delivers services to voters with disabilities strips them of their freedom and dignity.



Civil Rights Now! is organizing a campaign to persuade the provincial Liberals and NDP and other parties to make a commitment that if they win the next election they will pass legislation to truly empower voters with disabilities.



The Langley Pos-Abilities Society is hosting a meeting for the public on Saturday, November 20, 1:30pm to 3:30pm, at the Langley Seniors Resource Centre, 20605-51B Avenue to discuss the Civil Rights Now! campaign.



Civil Rights Now! website http://civilrightsnow.ca/

Hi everyone,

The ABA Support Network is pleased to announce the launch of 9 Neighborhood Network groups!

Small groups of ABA parents wanting to connect and network locally have been established in 9 areas in BC. Please contact the facilitator of a group to find out more and join the meetings. Each group will be having monthly meetings and time and date will be determined by what works for each group.

The meeting agenda of each group will vary depending on that areas needs and wants. If it is getting together for coffee or organizing a group to advocate for ABA services in school this is where you can participate and get the support you need.

Please see our website for a list of the areas, facilitators and contact information.

www.abasupportnetwork.com/neighborhoodnetworks.php

Please pass on to BI's and Consultants

If you are a therapist or consultant who has not received payment from AFU within a 30 day period, we urge you to write to Minister Mary Polak (MCFD) who has assured us that everyone is now getting paid on time. She will probably deal with this personally if someone out there is having a problem.

You need to clearly state when you worked, the date you submitted your bill (or asked for forms) and any other details (when you called the AFU office but couldn't get a hold of someone, or nobody knew where your forms were, etc etc).

You can e-mail her at mary.polak@gov.bc.ca and please Cc the ABA Support Network. I strongly recommend you also Cc your own MLA. You can find your MLA's e-mail at http://www.leg.bc.ca/mla/3-1-1.htm. You are a constituent in your MLA's riding and your MLA is supposed to follow up on any problems that you have. This will further push Ms. Polak into action.

The ABA Support Network wrote a letter to Mary Polak expressing our concerns (see below). Her response is that since August, they have hired new staff and there is no more backlog. She is convinced that there are no more problems.


ABA Support Network – The Voice of the ABA Community in BC

Improving access to quality ABA services for children, youth and adults with autism

Date: September 27, 2010

Dear Honourable Minister Polak,

Invoice Funding through the Autism Funding Unit is not paying BI’s and consultants within the 30 day period. While MCFD is reporting to you that payments are occurring on time, we have received reports from more than 50 service providers who are not receiving payments on time.

On September 20th, 2010, Arif Lalani called Dione Costanzo to explain the deterioration of the AFU. He said that six staff members have suddenly left the AFU, leaving no one to keep up with the paper work of the Invoice Payment Method.

It is doubtful that MCFD office employees had to go without their paycheques that month while FIFTY of our BI’s and consultants did in July and August.

MCFD and your office were aware of our concerns when Direct Funding was eliminated. On October 30, 2009, you assured a group of autism parents and professionals that this would not happen any more. The past 6 months should have been a time for demonstrating confidence that Invoice Funding could work. Instead, the AFU has demonstrated that it is dysfunctional and incapable of ensuring that our service providers get paid. We do not have confidence that things will improve.

We now have BI’s and consultants talking about leaving the profession so they can pay their mortgages and monthly expenses. It is a travesty that autistic children will lose their support system, because of the Liberal government’s actions. Please insist that MCFD find a way to fund our autism treatment so that payments are made in a timely manner.

Sincerely,

Nancy Walton

Director ABA Support Network



Cc: Honourable Kevin Falcon, Minister of Health

Honourable Margaret MacDiarmid, Minister of Education

MLA Gordon Hogg

Louise Witt and Roxanne Black, FEAT BC

There are two excellent newspaper articles in today's, Vancouver Province and Victoria's Times Columnist that I recommend everyone read.

The Times Columnist, "Why care about therapy for kids with autism"? written by Chris MacIntosh. He very accurately lists some of the most important and obvious reasons for treatment funding.

The Province, "There's not enough funding for autism treatment" written by our very own Dione Costanzo. This well written and concise essay begins by identifying the biggest problem for people with autism and their families in Canada today..."autism treatment is not covered under Medicare". She goes on to outline how the government's limited funding, (which exists because of the Auton litigation) can be removed with "the stroke of a pen". Well said and how true, Dione! I encourage you to read both articles because they accurately define the most fundamental obstacle to our children's well-being and basic human right - access to healthcare.

Like every other Canadian, our children should have a right to access all the equality provisions including health care, as prescribed in our Charter. Litigation and focused, purposeful, political advocacy have been successful in securing limited funding in BC. However, as Dione accurately points out - it is not protected and is already being eroded by the "invoice payment plan" which many of us "old-timers" warned and railed against when it was devised one year ago. I, along with others predicted the outcome we see today...and...sadly folks, I fear there's more "erosion" on the way. So - Parents, what's the solution? Purposeful and focused political action or more plainly - get active! First and foremost, our children's treatment must be enshrined and protected from the whims of bureaucrats/politicians. It needs to be universally accessible and covered under Medicare. Secondly, we need law/legislation which protects our children's basic human rights, similar to the ADA (Americans with Disabilites Act) in the US. How do we achieve these things? By getting informed and getting active! "Medicare for Autism Now! exists for the sole purpose of securing what the name states. The Civil Rights Now! Society, formerly know as the Paladin Advocacy League was created very recently to advocate for ADA-type law in BC. If you want to take action, rather than wait for the bureaucrats to decide your child is no longer worthy of treatment, education etc., I encourage you to get involved. In BC, parents have won some strategic battles to end the discrimination against our children but, there are more battles for us to win before we are victorius in the war our own government is waging against our children.

Dear parents/users of FeatBC,

The 2011 Budget Consultation is approaching real soon - this Wednesday, Sept 15th. Has anyone been able to book an appointment to speak about the budget cut in school funding for our children? If yes, please share on this website about your time, so that other parents could join as a group to show them [the provincial government] that we are all here for our children.

The SCDP advocates [Supported Child Development Program] has booked a time at 7:35pm [they have 10 minutes to present their speech]. Unfortunately, the group does not touch on the funding cut to school support.

Thank you. Like the saying goes, 'Together we are strong'.

hana.takuya@yahoo,com

Dear Feat readers,
I'm posting this for SCDP.

***

Hello,
We would like to gather families to meet, discuss challenges with respect to being waitlisted with Supported Childcare Development Program (SCDP), share our stories and concerns, and work together towards solutions. This meeting will be very timely for us to present our cause as a collective voice, in light of the Provincial government's 2011 Budget Consultations on September 15, 2010. Please see the attached letter for more information about our family and why you should come out. Our goal is to draw on the power of families to make a better world for our children.

Please pass this on to as many families as possible, and interested parties such as MLAs, daycares, preschools, after-school care, etc.

Date: September 13, 2010
Time: 7:15 p.m. to 8:45 p.m.
Address: Burnaby Public Library - McGill, 4595 Albert Street, Burnaby
Program Room (turn right past the return desk)

Please RSVP (due to space restriction) by email to SCDPinitiative@gmail.com or by phone to 778-986-2107 778-986-2107 .

If you are unable to attend but would like to be part of our initiative, please send your email address to us. We will keep you abreast of developments and ways that you can be a part of this initiative.

Together we are strong,
Wendy Seet and Marc Adams


September 4, 2010
MEETING ¨C SEPTEMBER 13th
Dear Families,
We are the proud parents of a child with special needs. Her name is Kate. She is 3 years old and
has Down syndrome. Our daughter is one of hundreds of children across the Lower Mainland on
a waitlist with Supported Child Development Program (SCDP) for extra staffing support. This
waitlist and the lack of services make us also very worried parents.
Are you in the same situation? Are you a worried parent of a child with special needs? Is your
child on waitlist with SCDP? If so, we strongly recommend you to attend this meeting on
September 13th.
The SCDP provides consultation and staffing support so children with special needs can be
included in childcare settings from daycare to preschool and out-of-school care. Currently, this
program is not meeting the needs of far too many children and their families, due to insufficient
funding from the Ministry of Children and Family Development (MCFD).
Over the past six years, the number of children requiring support from the Burnaby SCDP has
increased by over 100% (from 123 children in 2004, to 275 in March 2009!). Consultants now
have an average caseload of 49 children each while the provincial standard for caseloads is 25-35
children. It is our understanding that other regions are facing the same challenges. The increasing
strain on the SCDP coupled with a significant budget shortfall is causing waitlists to grow.
Consequently, many children ¨C including yours ¨C will remain on a waitlist for services. In our
daughterˇŻs case, she is number 62 on a waitlist for extra staffing support at her daycare. Specific
to daycares, there has been little movement on the waitlist for staffing support over the past 2
years. These numbers leave us with little hope for change or service at a time when it will most
benefit Kate.
If we want our children to be a part of the community when they grow up, this is where we need
to start. Our children deserve to have the opportunity to develop to their highest potential amongst
their peers in the community. The SCDP ensures a safe and inclusive environment but they need
the funding to be able to do this, therefore, we need to let our voices be heard and bring these
issues to the forefront.
Families need to come together on this issue. We encourage you in this time of urgency to
stand up and be counted. Please join us on Monday September 13, 2010 to find ways to let
the provincial government know how very important it is that they work to increase the
funding to the SCDP and the impact it has on families like ours who are sitting at home
waiting for support.
Our kids canˇŻt wait anymore!!

Sincerelyˇ­two proud but worried parents,
Wendy Seet and Marc Adams

FYI: The Provincial government's 2011 Budget Consultations are in Vancouver Sept 15th . Registration opens at 8am on the 9th .Hearings are also scheduled for other dates in other communities around the proviince.

Please circulate this and encourage groups and individuals to register to speak about any concerns they might have about budget cuts and underfunding for education, special education, autism & other early intervention pprograms, supported child care, adult group homes and other community living services etc, etc


Here is the link:

http://www.leg.bc.ca/budgetconsultations/public_hearing.asp



It is really important that MLAs on the committee hear loud and clear that British Columbians want to see vital supports and services for children and adults with developmental disabiliteis restored. If you can't present in person, the committee also receives input via email or online.

Celebration of Life for Dr. Ivar Lovaas

Save the Date - September 23, 2010 7-9pm

Lovaas, a distinguished professor of psychology at UCLA, a pioneer in the research and development of Applied Behavior Analysis (ABA) therapy to treat children with autism, and the founder of the Lovaas Institute (www.lovaas.com), died on August 2nd at age 83.

Parents and professionals in BC will gather on this special evening to pay tribute to Dr Lovaas and review the history of his work and ABA as a treatment for autism.

Hear from the parents who founded FEAT of BC, brought ABA treatment into this province and continue to fight for universal access to science based treatment for all individuals who need it. Thanks to litigation by parents in the past we are able to access funding for autism services today.

Share your own story about what Lovaas and ABA has done for you and your family.

Topic: Celebration of Life for Dr. Ivar Lovaas

Guest Speakers:

Dr. Glen Davies, Director of ABLE Developmental Clinic

Dr. Sabrina Freeman, Parent and Founding Director of FEAT-BC

Jean Lewis, Parent and Founding Director of FEAT-BC

Location: Surrey Sport and Leisure Arena - Meeting Room #2

RSVP: dione@abasupportnetwork.com

I helped protest in front of Russ Hieberts office two years or three ago... He was not supportive.. (Now he is the Health Minister I think)

I just got this from CKNW -- I am livid.. I do not live in that riding anymore... But I wanted to pass this on to anyone.. I wish there was something that could be done..

Email from FROM CKNW

Hello Jacqueline,

Will these politicians ever learn? By now you are well aware of Russ Hiebert – the Conservative in South Surrey-White Rock-Cloverdale who talked about holding the Liberals' feet to the fire when it came to wasteful spending, got himself elected, and then became the second highest spending MP in all of Canada, billing you the taxpayer for $637,000 in 2008-2009 – over $204,000 more than the average among all MP's – and including at least 30 trips for his wife and two kids – flying first class from Vancouver to Ottawa and back again.

Now here comes Liberal MLA Ida Chong who is winning her very own war on poverty, and once again, you the taxpayer are paying. She represents the Oak Bay-Gordon Head constituency – maybe a 20-minute drive from the Legislature. She also billed the taxpayer for $5,921 last year for meals. Her explanation to reporter Rob Shaw with the Victoria Times Colonist newspaper – "When the house is in session, you are not able to leave the legislature". All MLA's can claim up to 61-dollars a day for meals. So it doesn't appear Ida Chong has broken the rules. The rules, it must be remembered, are set up by the MLA's and as Jon McComb so aptly pointed out earlier this year during the Hiebert kerfuffle - the rules are set up by politicians, for politicians.

Great work if you can get it. This is the Liberal government of Gordon Campbell that brought in the HST because the worldwide recession kicked the crap out of provincial government revenues. This is the government that just last year – the same year she claimed $6,000 for meals – laid off hundreds and hundreds of civil servants. All of that is fine – I get it. The recession hurt. But hasn’t Ida Chong ever heard of bringing her own lunch to work? Is that such a radical concept? She sleeps in her own bed every day, eats breakfast in her own kitchen – but hey, if a perk is there I’m damn well going to take full advantage because someone else is paying the bill. I'm sure Ida Chong works hard and I know as a politician, she sometimes works long hours, but $6,000 for lunches and dinners?

In the grand scheme of things, $6,000 is not a huge amount compared to the billions the government spends. Then again, Russ Hiebert's $637,000 is just a drop in the bucket in the overall federal budget.

But that's not the point.

Arrogance and entitlement – that's what Hiebert displayed and Ida Chong is doing the same thing. Ida Chong – how about a little humble pie for lunch, and you pay the damn bill for once. Will these politicians ever learn?

Gord MacDonald
CKNW News

I have a question about the Home Owner Grant. I've searched the site and read the topics about the Disability amount but I am still unsure whether I can claim it if I'm currently utilizing my Autism Funding to pay for the ABA Therapy. We are running low and will be paying out-of-pocket soon but so far this year it has all been covered. My son was only diagnosed in December so we don't have any previous year information to go on, either. Is there any way I can apply for this grant even though I haven't paid for therapy out of pocket yet this year? We will definitely surpass the $150 per month that is required in the second half of the year!

Blue Cross to Pay $125,000 in Ground-Breaking Settlement for Autism

xrl.in/5j72

Blue Cross Blue Shield of Michigan has again been compelled by a lawsuit to pay claims for autism spectrum disorder treatment known as Applied Behavior Analysis, or "ABA."
In the case of Matthews v. Blue Cross, Case No. 09-018750-CK , Wayne County Circuit Court, Blue Cross accepted a case evaluation award

autisminsurancemi.blogspot.com xrl.in/5j74
of $125,000 in favor of the plaintiff, Cheryl Matthews, an Oakland County Circuit Court judge. Matthews alleged in her lawsuit that Blue Cross wrongfully refused to pay $38,000 in insurance claims stemming from the ABA treatment provided to her autistic son.
Earlier this year, Blue Cross paid over $1,000,000 to settle a class action lawsuit, Johns v. Blue Cross, No. 08-12272 (E.D. Mich) which also alleged that the insurer had engaged in a pattern and practice of wrongfully denying claims for ABA therapy. Both the Matthews case and the Johns case were handled by Gerard Mantese and John Conway, who devote a large part of their practice to making ABA therapy available to children with autism spectrum disorder.
Blue Cross took the position that Matthews' claim should be denied because ABA therapy was not an approved medical treatment under her insurance policy. Blue Cross filed three separate motions for summary disposition, seeking to dismiss the case, but Judge Prentis Edwards denied all three motions, forcing Blue Cross to either settle the claims or go to trial.
The $125,000 amount which Blue Cross must pay to Matthews represents three times the cost of therapy and recognized Matthews' argument that her inability to access additional therapy from Blue Cross for her son will result in increased life care costs for her son. Many other States mandate that insurers pay for ABA therapy for autistic children, but the Michigan legislature has not yet passed a law to this effect.
Gerard Mantese, counsel for Cheryl Matthews, stated: "We believe that this is the first settlement in the United States to recognize the link between the inability of children with autism spectrum disorder to access needed ABA therapy and increased life care costs in the future because of the reduced functioning of children with ASD."
John Conway, co-counsel for Matthews, stated, "We will continue to bring these suits until all insurers stop making baseless excuses for insuring this needed therapy."

Here's the link for the radio interview for anyone who doesn't know how to find it.

http://www.cknw.com/other/audiovault.html

Go to Wed,May26 at 10:00 am

you can then scroll over to about 3220 and it will start.

Barbara

Top of pagePrevious messageNext messageBottom of page Link to this message By Bev Sharpe (Sharpe) on Monday, May 24, 2010 - 12:31 pm:

This Wednesday, May 26th. Paul Caune, executive director of Paladin Advocacy League (PAL) and Jean Lewis, former FEAT of BC director and co-founder of Medicare for Autism Now, will be guests on the Bill Good Show. They can be heard between 10:30 and 11:30 a.m. on CKNW 980 AM. Please tune in to hear Paul and Jean describe the events which inspired the creation of PAL, and how PAL intends to advocate for the rights of all British Columbians with disabilities. If you can, call in and join the discussion.

Beverley

By Bev Sharpe (Sharpe) on Monday, May 24, 2010 - 12:09 pm:

By Bev Sharpe (Sharpe) on Monday, May 24, 2010 - 12:07 pm:

Attention all FEAT parents and supporters!

Please see the following information and invitation from Paladin Advocacy League of PAL.

You are all invited to PAL's launch event this Saturday, May 29th. PLEASE NOTE THE TIME CHANGE...IT WILL BEGIN AT 2:30 PM as opposed to 1:00

I, along with former FEAT of BC director, and founder of Medicare for Autism Now Jean Lewis, are on the PAL board of directors.

Like FEAT of BC, PAL is a 100% volunteer advocacy organization.

We look forward to seeing you on Saturday.

Beverley

Are the following words true for you?

“Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on mental or physical disability” Section 15 of the Canadian Charter of Rights and Freedoms.

If you are a Canadian who has been discriminated against due to a mental or physical disability, please read on….

Lack of effective public policy and political will has allowed Canadian institutions at all levels to deny Canadians with disabilities equal access to full citizenship as guaranteed in our Charter. Despite what our politicians tell us and the rest of the world, systemic discrimination is an everyday reality in Canada for most of us living with a disability.

The way to right this wrong is through real advocacy, political will and law.

The Paladin Advocacy League (PAL) is a recently formed not-for-profit society which advocates for public policy changes which will provide Canadians with disabilities equal access to the equality provisions of our Charter….actions speak louder than words.

We intend to put our founding principles into action by:

1. Advocating for public policy changes which will enforce the equality provisions of the Charter of Rights (Section 15) creating practical force and effect for all British Columbians with a disability.
2. Advocating for portable, consumer-driven individualized funding for British Columbians with disabilities.
3. Advocating for government-funded legal counsel for test cases.

Canadians with disabilities are also Canadian citizens with the responsibility to vote and make clear to our politicians and bureaucrats that it is nothing more than reasonable to expect equal rights in Canada in the 21st century!

We want to meet with you to talk, listen, discuss, plan, laugh…and, of course, eat cookies! Coffee will also be served.

Please join the Board of PAL on:

Saturday, May 29th
1:00 – 3:00 p.m.
Collingwood Neighbourhood House,
Program Room, 2nd. Floor,
5288 Joyce St., Vancouver
(two blocks south of the Joyce Sky Train station)


Everyone is welcome, particularly Canadians with disabilities, their families and supporters.

Sincerely,

Paul Caune

Rsvp info….please forward to other interested folks etc….

Sorry - I have no idea why my last message posted so many times...

Missouri Legislature Passes Insurance Coverage for Autism

globe-democrat.com is.gd/c6xsG

Missouri families with children on the autism spectrum disorder will soon be guaranteed that health carriers will provide coverage for the diagnosis and treatment of autism spectrum disorders. The Missouri General Assembly today gave its final approval to House Bill 1311. The measure, handled by Sen. Scott T. Rupp, R-St. Charles, and Sen. Eric Schmitt, R-Glendale, now moves to the governor’s desk for his signature to become law. The bill, if approved by the governor, would take effect August 28.
Rupp noted that autism is the only disorder out of the top 10 childhood neurobiological disorders that is not covered by health insurance.
“It’s been a long road to get to this point. This is an important day for Missouri families that struggle with autism,” said Rupp. “The legislation we passed today is fair for everyone, and most importantly, it gets families the help they need."
Schmitt has been a strong supporter, working to advance the measure through the legislative process. He has also shared his family’s personal experiences with his colleagues regarding his young son, Stephen, who falls on the autism spectrum.
“Children on the autism spectrum deal with so many challenges each and every day,” Schmitt said. “These proven therapies are the difference between whether a family can go to a restaurant without having to leave early, the difference between a child having meaningful friendships. We owe it to these families to give their children the opportunity to reach their full potential. Put simply, this bill is the right thing to do and the right time to do it."
The bill requires most health carriers that issue or renew health benefit plans to provide coverage for diagnosis and treatment of individuals with autism. It would restrict health carriers from refusing to issue or renew coverage based solely on the fact of an autism diagnosis. The proposed insurance coverage would include a physician or psychiatrist’s referral of ABA (Applied Behavior Analysis) therapy — up to $40,000 per year for individuals under the age of 21. A cost-of-living adjustment has been included to adjust the cap for therapy services in coming years.
Senate Leader Charlie Shields, R-St. Joseph, said early diagnosis and intervention is reported as the key to making sure children on the spectrum can have the best quality of life possible.
“We have worked to make prevention and early diagnosis a cornerstone of health care in Missouri,” Shields said. “By passing this bill, we are making sure the same is true for these children."

Are these words true for you?
“Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on mental or physical disability” Section 15 of the Charter of Rights and Freedoms.
Lack of effective public policy and political will has allowed Canadian institutions at all levels to deny Canadians with disabilities equal access to full citizenship as guaranteed in our Charter. Despite what our politicians tell us and the rest of the world, systemic discrimination is an everyday reality in Canada for most of us living with a disability.
The way to right this wrong is through real advocacy, political will and law.
The Paladin Advocacy League ( PAL ) is a recently formed, not-for-profit society which advocates for public policy changes which will provide Canadians with disabilities equal access to the equality provisions of our Charter. Actions speak louder than words.
We intend to put our founding principles into action by advocating for:
1. Public policy changes which will put the equality provisions of the Charter of Rights and Freedoms and the Convention on the Rights of Persons with Disabilities into practical force and effect for all British Columbians with a disability.
2. Portable, consumer-driven, individualized funding for British Columbians with disabilities.
3. Government-funded legal counsel for test cases.
Canadians with disabilities are also Canadian citizens with the responsibility to vote and make clear to our politicians and public servants that it is nothing more than reasonable to expect equal rights in Canada in the 21st century.
We want to meet with you to talk, listen, discuss, plan, laugh and, of course, eat cookies! Coffee will also be served. Everyone is welcome, particularly Canadians with disabilities, their families and supporters. Please meet with the Board of PAL on:
Saturday, May 29th, from 1:00 pm – 3:00 pm
Program Room, 2nd Floor, Collingwood Neighbourhood House
5288 Joyce St., Vancouver (two blocks south of the Joyce Sky Train station)
RSVP
To palsharks@yahoo.ca
Or call Paul Caune (604-928-1644)
Or visit our Facebook Group page PAL: the Paladin Advocacy League

RE: Message from Minster of Health World Autism Awareness Day

Thanks for posting that Jemma - same old bs - just dished up to us again <sigh> I agree with your sentiment exactly.

Barbara

Thanks Jemma for that post. I find the conclusion of this to be absolutely disgusting. Put an ASD kid in her family and watch these politicians scramble to get the very best care out there for their kids. Suddenly it becomes "their" problem. But for now, it is OUR problem.

I think our kids are fortunate to have us, they don't have anyone else. What is sad to know is when parents contemplate suicide or hunger strikes and still there is James Delorey from Nova Scotia but no cause to fund ABA

Here is some news from south of the border.

Fifteen states have enacted autism insurance reform legislation. Many others are expected to vote on similar legislation this year...

Unprecedented Week for Autism Insurance Reform As Three More States Act To End Discrimination Against Children With Autism
http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=8146949

As opposed to hiding behind "jurisdiction issues", the federal government is also making progress...

U.S. House Passes Health Care Reform Bill Containing Provision For Autism Insurance Reform
http://www.autismvotes.org/site/apps/nlnet/content2.aspx?c=frKNI3PCImE&b=3930723&ct=8107177

We can expect a lot more Autism Refugees going south. I know we are a nation with great hockey players, but patriotism means nothing when you're watching your kid disintegrate.

Here is World Autism Awareness Day Message from Leona Aglukkaq, Minister of Health:

http://www.hc-sc.gc.ca/ahc-asc/minist/messages/_2010/2010_04_01c-eng.php

Sounds familiar? This is the same script that has been used a thousand times to tell us "we need to learn more about the causes of ASD and the most effective treatments and interventions BEFORE THE GOVERNMENT DOES ANYTHING TO HELP."

I wish Aglukkaq would explain the following:

1. Unlike numerous other disorders, it's wrong to provide INTERVENTION for autism until you know the CAUSE?

2. The on-going search for the MOST effective treatments somehow disallows the provision of ANY treatment?

Instead of insulting my intelligence, I would rather just hear her say, "please understand parents of autistic children have too little political influence to be worth our attention."

Once again let's look to the American's and what they are doing with health care reform (top of the news on CNN). Here is a story of parents and their struggle to get insurance for their son with autism:

http://www.cnn.com/video/#/video/health/2010/03/22/intv.hcr.hawkins.family.cnn?hpt=C2

Hi,

Has any one had problems with the Vancouver Supported Child Development people? My son was on the waitlist to get support from VSCD and his name finally reached the top. He has been receiving support in a daycare since September but we have been told that his support will be cut off at the end of March. In October we received a call from a consultant telling us that my son is making so much progress he doesn't need any more support. I challenged her based on the progress on his goals and the support continued. I told them as well that if they pulled his support then they should give back the money that they received from the school board. My son was a December baby so we decided to hold him back from kindergarten for a year. Being the youngest child in the class and having autism as well is not a receipe for success. When we received notice that our son's support would be cut off at the end of March, I argued that he deserves support because of his position on the waitlist. The coordinator told us that his name was mistakenly taken off the waitlist and apologized to us. She refused to place his name back in the original position but assured us that they would try to not make that mistake with any other family. We went above her and her superior told us today that the decision will not be changed. I asked her why and she said, "I just can't." Does anyone know a good lawyer who is familiar with the VSCD or Centre for Ability policies. Any advice is appreciated.
Oh yeah, this is our experience with the VSCD.

Hi Barbara,

There are representatives from featbc, ASBC and the ABA Support Network all working to reclaim direct funding. It would really help if feat members contacted their MLA

http://www.leg.bc.ca/mla/3-1-7.htm

and get them to ask Mary Polak to reverse the decision. Perhaps if 30 MLA's go to Mary Polak, she will get the message.

Nancy

Barbara, your message came in a timely manner because I've just mailed out my agreements.

Like you said, I wouldn't touch on why the mass is punished for a few...because for the past year, the 'whys' have killed a lot of my cells. Just imagine who would vote for the HST. Aren't the citizens of Canada clear enough but look at our [pathetic, blood-sucking] government. HST is coming to every home in July, be it you are rich or poor. So, this is not a so democratic country after all, but certainly not the worst.

You are so right that the MCFD does want to take full control of the funding. However, I care more about when it's all invoice payment, how many more staffs will be employed to do a stinking job whereas the $$$ can be more fully utilized in helping more individuals on the spectrum.

I believe every $ spent on these wasted effort can be channeled into more humane and wise way.

Just look at The BC Centre for Ability. It has a hell long waiting list of clients....but they say they have no $$$, blah-blah-blah.

MCFD says [no guarantee] that they will issue the payment within 30 days to our service providers. The latter claim it depends on the staff who's working on it. So, wish us all the best of luck.

That being said, I wouldn't worry much about that monthly funding because it's only half of what I'm spending. So, for me, I will pay my BIs through my own pocket because they are students and have my other more professional service providers go through the bureaucrats [hell, hope they won't curse me for saying this].

Finally, take it easy, parents. Nothing is worse than knowing the diagnosis of our beloved ones and live with it[I mean the diagnosis]. Cheers.

Hello everyone:

I was just wondering what (if any) response anyone has had concerning the loss of direct autism funding? My concerns were answered with the fact that there a some (probably a minor few) that were misusing funds - I won't get into the hows/whats but that was the one answer - (although nothing in writing to that effect). Why the rest of us are being punished for the actions of a few is beyond me but my guess is MCFD has wanted to 'take away' direct funding for a long time and now have a few valid reasons to.

My other question is for those who have been switched to direct funding - how long is it taking for your staff to get paid? Is it timely? How are you able to hire staff who will only get paid every 6 weeks????

Thanks in advance.

Barbara

Hi everyone,

Here is a message that is circulating via email from a Coquitlam parent who is looking for support at a School Board meeting on Feb. 23:

Friends, Family, Special Interest Groups and Supporters: Please forward this email to anyone else you think may benefit from reading it or be affected by it.

Dear parents, my name is Jana and I am the mother of an 8 year old son with Down Syndrome. I am writing this email with the hope you will take a few minutes to read it over, and join me in my effort to effect change in how School District #43 and the Union assign SEA’s(special education assistants) to our children. I have discovered over the past 4 years the process can be very disruptive and have a negative impact on our children, as well as the other children and teacher in that classroom.



Last year my son, Reid, had a total of 9 SEA’s in a 4 month period. This situation led me to wonder what kind of system or structure was in place that could lead to this happening. After speaking with Reid’s teachers, many SEA’s, a variety of administrators and other parents of children with special needs, I felt I needed to pursue the matter further to get the answers I was looking for.



I have spent the past few months trying to figure out and understand the process of placing an SEA with a child and have come to the conclusion there are some definite problems with the current system. After speaking with the Superintendant and Assistant Superintendant of SD 43, the Director of Student Services, two School Board Trustees, the President of the Coquitlam Teachers Association, the President of CUPE(the union that services the SEA’S), the Editor of the Tri-City News and speaking at the District Advisory Group last month, I now feel I must speak publicly at a School Board Meeting.



THIS IS WHERE I COULD USE YOUR SUPPORT. As the editor of the newspaper said “strength in numbers”. I know if I go to the Board meeting alone they will listen politely and maybe ask a few questions. BUT, if I show up at the meeting with 50 supporters standing behind me, they will be forced to pay attention. The CUPE contract is being re-negotiated this spring and my hope is that both sides(the School Board and the Union) listen to my 3 main concerns and have some real discussion around it, instead of just accepting the contract as it is currently exists.



I have asked to speak at the Tuesday February 23rd School Board Meeting(7:30pm) but won’t have confirmation until the week prior. If any of you are able to come to this meeting with me and just stand there in support I WOULD GREATLY APPRECIATE IT. I only have five minutes to express my concerns, so your presence there would send a strong message.



I have attached the document I sent to the Board earlier this month outlining my three main concerns and some possible suggestions/solutions(at the request of the Board). I know you all have busy lives and to be honest taking up this cause requires a lot of time and energy I don’t necessarily have. If I don’t speak publicly now and advocate for my son and every other family in the tri-cities that has a child with special needs, I believe they may not receive the best possible support and education they deserve.



Please email me if you think you might be able to attend this meeting so I can start a list of supporters and send another email prior to the Board meeting to confirm the date and location. Thank you in advance.



Sincerely,

Jana Demelo

jjdemelo@telus.net