[Andrew Kavchak]

Hi Folks,

This article appeared in a few papers today…need a national conversation about autism…Speech from the Throne…another journalist is finally getting it.

Autistic children and their families need more support

BY L. IAN MACDONALD,
SPECIAL TO THE GAZETTE AUGUST 27, 2013

A few months ago, Zara handed me an old children’s story book, of which only the covers remained.

“Read me a story, Daddy,” she said.

“What story, sweetie?”

“The one in my imagination.”

Which is not the only five-syllable word in her vocabulary. At the cottage two years ago, when she had just turned 2, I was putting her in her stroller for our morning walk down to the bridge.

“We’re going for our morning constitutional,” she declared. Her mother explained that back home, she would take her out for their “afternoon constitutional.” From afternoon to morning, Zara could tell one from the other, but she remembered her constitutional.

This summer, at 4, when she caught a toad on the beach at the lake, she and her Mummy made a home for it — turf, sand and water in a Frisbee, all in an inflatable wading pool. When Toadie disappeared from view, Zara said: “He’s camouflaging in the habitat.”

She also has a photographic memory.

Sitting out in her grandparents’ backyard last summer, I pointed out a bird that flew by. “Look at that little yellow bird,” I said.

“Daddy,” she said, “that’s a Goldfinch.”

Her grandmother had been reading an illustrated book of birds with her, and she knew all the ones in the backyard.

It also turns out that she has perfect pitch, which is one of the reasons why she can’t stand people singing off key. At her third birthday party last year, she covered her ears and began to scream when guests started to sing Happy Birthday.

From the age of 2½, she began exhibiting many other sensory issues. She became extremely sensitive to sound and light, as well as touch. Once, when I was helping her into her car seat, my cheek brushed up against hers. “Oh, Daddy,” she exclaimed, “you hurt me with your beard, but I love you anyway.”

This is part of a diagnosis last fall that Zara has a moderate case of Asperger’s syndrome, which is an autism spectrum disorder at the high performance end of the scale.

Zara has the vocabulary of a child perhaps twice her age.

“Did you go swimming today?” I asked her on the phone this summer.

Instead of a simple yes or no, I got the weather report.

“No, Daddy,” she said, “it was rainy, and foggy and cold.”

She has behavioural issues familiar to parents of Aspies. She has obsessive interests: for six months, she believed she was a bunny; currently, she will tell you she’s a teenager. She is less interested in playing with her peers than with older children and adults; until recently, she would tell kids her own age to simply “go away.” At her preschool, she would not join circles, and preferred to do her own thing. She can be quite obstinate about getting her own way, and sometimes has meltdowns when she doesn’t. She can say things that are very funny, but socially inappropriate.

One Canadian child in 88 has ASD, and Zara is one of the fortunate ones at the high end of the scale. All these children have special needs that are not covered by their medicare cards.

Getting the kind of developmental therapy these kids need is expensive. Zara’s mother recently enrolled her for daily half-day sessions at a privately run exceptional learning centre near their home in the Greater Toronto Area. It’s very expensive — like sending your kid to an Ivy League college, in pre-K. Yet at least, between us, we can afford it.

But what about the parents who can’t afford therapy for children with special needs? And what about their kids, who could consequently fall between the cracks?

The obvious answer is that we can help these families now, and help their children become productive, and potentially brilliant, members of society. Or we can pay for the costs of looking after them later.

Margaret Clarke of the University of Calgary, a leading authority on autism, and her U of C colleagues David Nicholas and Herb Emery, have written in a Policy magazine article that the “net present value at birth of the incremental costs of supporting the ASD population over its neurotypical peers in Canada can be estimated at $3.4 billion for each annual birth cohort.”

They also note the employment rate for persons with ASD “ranges in studies from 10 to 55 per cent.”

Canada’s autistic children and their families need more of the kind of support offered in the 2013 federal budget — such as the $222 million earmarked for training, including for persons with disabilities, and other low-cost initiatives such as the $15-million Accessibility Fund for PWDs.

And while health and education are in provincial jurisdiction, we need to have a national conversation about autism. The coming Speech from the Throne would be a good starting point.

L. Ian MacDonald is editor of Policy magazine (policymagazine.ca)

[Andrew Kavchak]

Hi Folks,

Autism has been getting some ink in the press lately. Earlier this week there was news about a mother in Ontario getting an anonymous letter suggesting that her autistic son should be killed because he was not normal and it was bothering the letter-writer (a neighbour). And I thought we had defeated naziism in 1945! Unfortunately, not so.

Second, the Children's Hospital of Eastern Ontario (CHEO) got some bad news this week as they lost a human rights case (see below). One thing to note is that while the Canada Health Act (Medicare) is supposed to apply to medical services provided by doctors and hospitals, I can't tell you how many time bureaucrats told me that autism treatment should not be covered by Medicare as it is not a treatment done by doctors or hospitals, even though this is clearly not the case in the nation's capital. However, it is my understanding that CHEO performs the service on contract to another ministry (I believe they call themselves the Ministry of Community Services or something like that) and not to the Ministry of Health. The whole thing seems like a shell game.

From Ottawa Citizen Website August 23, 2013.

CHEO accused of discriminating against autistic boy

Ontario Human Rights Tribunal to hear complaint about child’s dismissal from intervention program

BY DON BUTLER, OTTAWA CITIZENAUGUST 22, 2013

OTTAWA — The Ontario Human Rights Tribunal will hear a complaint that the Children’s Hospital of Eastern Ontario discriminated against an autistic boy when it discharged him from an intervention program.

In an interim decision dated Aug. 16, the tribunal agreed to add CHEO as a respondent to the complaint, which originally named only Ontario’s Ministry of Children and Youth Services.

After reviewing evidence that officials at CHEO made the decision to discharge the boy — referred to only as M.B. — the tribunal added CHEO to the case.

“There is a potential that CHEO might be responsible, or share responsibility, for any alleged (Human Rights Code) violations in this case,” tribunal vice-chair Jo-Anne Pickel concluded.

According to facts outlined in the Aug. 16 tribunal decision, M.B. is a child who has been diagnosed with Autism Spectrum Disorder and Global Development Disability (GDD).

As a result of his diagnosis, he was eligible for intensive behavioural intervention therapy at CHEO.

The therapy, funded by the provincial ministry, provides individualized programs for children towards the severe end of the autism spectrum.
CHEO’s website describes the program as a comprehensive approach used to teach a broad range of skills, including communication, socialization, self-help, pre-academic and play. The goal is to help young children with autism “catch up developmentally with their age peers,” the website says.

The human rights complaint was filed by M.B.’s “next friend,” D.H. (In law, the term “next friend” refers to someone who acts on behalf of another person, often a child, who lacks the legal capacity to act on his or her own behalf.)
It alleges that the boy was discharged from the program “as a result of his secondary diagnosis of GDD, which affected his ability to meet certain learning goals.”

That amounts to discrimination because of disability, a violation of the Ontario Human Rights Code, the complaint alleges. The Citizen contacted D.H., the complainant, but he declined to comment.

GDD — known as Global Development Delay before age five — is defined as “a disability characterized by significant limitations both in intellectual functioning and in adaptive behaviour.” Common signs include limited reasoning or conceptual abilities, poor social skills and judgment, communication difficulties and aggressive behaviour.

The complaint against CHEO and the ministry alleges that the manner in which M.B.’s eligibility was assessed had a “disparate impact” on him because of his secondary diagnosis.
After mediation on May 17 of this year failed to resolve the matter, the tribunal agreed to hear the complaint next Feb. 12-14.
CHEO declined to comment specifically on the case Thursday. But in an email, it said the hospital’s care providers are “incredibly committed to the well-being of kids and would never discriminate against a child because of a disability.

“Our clinicians have to make difficult decisions about the appropriate care for each child, and they always strive to base their decisions on the child’s unique needs and best interests.”

The only reason a child would be discharged from the intensive behavioural intervention program, the hospital said, “is if the treatment were not working for him or her.”

The complainant applied to add CHEO as a respondent after receiving a letter from the ministry explaining that it was the responsibility of regional service providers — CHEO, in this case — to determine eligibility for intensive behavioural intervention programs.

In a response to the tribunal opposing the application, CHEO reviewed the history of M.B.’s treatment and its discontinuation and declared that there was no basis for a finding that the hospital violated the Human Rights Code.

CHEO said M.B. “was treated in the same manner as all other children entering the program,” the tribunal’s interim decision says. The hospital also argued that the decision to terminate services to M.B. was based on “a clinical decision founded on appropriate clinical testing and clinical judgment.”

According to CHEO’s website, not all autistic children benefit from the intervention program. Some improve, some show limited or no gains and some even get worse.

To continue in therapy, the website says, children need to show “benefit especially in language, general cognitive ability and measures of adaptive behaviour.”

Each child’s progress is reviewed every six months and a clinical decision is made whether the child should continue in the program or be referred to other services.

CHEO’s website says the “clinical decision” regarding continuation or discharge is made by a panel of psychologists and is subsequently reviewed with the child’s parents by the supervising psychologist or clinical supervisor and the senior therapist of the child’s team.

In her decision adding CHEO as a respondent to the complaint, Pickel said the hospital’s arguments that it did not violate the Code by discharging M.B. “are more appropriately made in the hearing on the merits.

“I find that it would be fair in the circumstances to add CHEO as a respondent,” she wrote. “Fairness requires that the applicant be permitted to add the entity that the ministry states was responsible for (M.B.’s) eligibility to remain in the program.”

[Andrew Kavchak]

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.

[Andrew Kavchak]

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."

[Andrew Kavchak]

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.

[Andrew Kavchak]

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

[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

[Andrew Kavchak]

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!

[Andrew Kavchak]

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."

[Andrew Kavchak]

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.

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