[Andrew Kavchak]

Hi Folks,

A while ago a father of a teenager with autism in Toronto risked his own health and walked to Ottawa through awful snow storms to raise awareness of the need for a National Autism Strategy.

And now…

March 26, 2008
THE TELEGRAM (ST. JOHN'S)
PAGE: A2

And he's off!

LLUS: Seen here at the Terry Fox monument at St. John's harbour Tuesday morning, marathon runner Jonathan Howard (left) began his cross-Canada "Run The Dream" campaign in hopes of raising $2.5 million to benefit children affected by autism spectrum disorder (ASD). He hopes to complete his eight-month solo run of 9,000 km in Victoria, B.C., by Nov. 21 after crossing 10 provinces and visiting more than 650 communities on his trek. Howard, 24, is a resident of Mississauga, Ont., and a McMaster University alumnus. Here he presents St. John's Port Authority director of business development, Bob McCarthy, with an official run toque to commemorate the start of his run from St. John's.

– Photo by Joe Gibbons/The Telegram

[Andrew Kavchak]

Hi Folks,

Back on November 22, 2006 FEAT of BC organized a rally for a National Autism Strategy on Parliament Hill. The day before the rally, after months of sending parents of children with autism, letters stating that autism was entirely a provincial matter, the federal Health Minister Tony Clement held a press conference and began by stating that the situation now was so serious, that doing nothing was "not an option". He proceeded to outline an autism plan, which included a "website" and…a "symposium".

The sad story of the symposium, which was initially to be held at the beginning of 2007 and then suddenly postponed and appeared to have its mandate changed, was well described in two letters of concern (August 6 and October 3, 2007) from the Autism Society of Canada (ASC) to the Minister. Both letters were posted on the ASC website and should be read by every concerned Canadian (see http://www.autismsocietycanada.ca/index_e.html).
Nonetheless, the "by invitation only" symposium went forward in a cloak of secrecy in early November 2007. It was organized by the CIHR (the Canadian Institute for Health Research or something like that). Now, several months later, we members of the community still have no idea what was discussed and what were the consequences. Any report? Any follow-up? Any real action? But wait! The CIHR "Scientific Director" just posted a general update message on the CIHR website. See below.

Some readers may get a warm, fuzzy, glowing feeling all over while reading it. After all, they claim to have received "positive feedback". Others, well…

Should you wish to follow-up with a request for more information, a question or commentary, please note the contact person and information at the bottom of the message from their website.
_______________________________________
From: http://www.cihr-irsc.gc.ca/e/35758.html

Institute of Neurosciences, Mental Health and Addiction (INMHA)

The Brain Brief: Vol. 5 No. 1 January 2008

National Autism Research Symposium
Toronto, November 8-9, 2007

CIHR had been tasked by the Hon. Tony Clement, Minister of Health, with organizing this event and CIHR-INMHA, with assistance from CIHR-IHDCYH, took the lead. The symposium was part of a series of initiatives on autism announced by Minister Clement in November 2006. The other commitments included exploring the establishment of a research chair focusing on effective treatment and intervention for autism spectrum disorders (ASDs); launching a consultation process on the feasibility of developing an ASD surveillance program through the Public Health Agency of Canada; creating a dedicated page on the Health Canada web site focused on ASD; and designating the Health Policy Branch of Health Canada as the ASD lead for actions related to ASD at the federal government level.

The symposium brought together 95 attendees including researchers, health professionals, educators, service providers, family members and persons with autism, as well as community organizations and government representatives. All the provinces and two territories (Northwest Territories and the Yukon) were represented. The goals of the symposium were to inform participants about the current state of knowledge on autism, to further the dissemination of ideas and to assist the research community in planning for research.

The opening evening session featured presentations from a person with autism (Daniel Share-Strom), a parent (Jennifer Overton) and a prominent researcher in the field (Dr. Susan Bryson, Dalhousie). On the second day, after introductory comments from the Health Minister, twelve leading Canadian researchers in the field of autism discussed the latest findings, with brief question and answer periods. Symposium participants then broke into six groups to discuss specific issues relevant to autism research. Each group suggested three key ideas to help inform research and presented these to the symposium as a whole. Every participant then had an opportunity to provide written feedback on these ideas and the symposium closed with some general comments from the floor.

Feedback from the symposium was very positive, with many participants appreciative of the opportunity to meet with individuals from different sectors and many expressing a wish to make this kind of meeting a regular event.

For further information on this meeting, please contact Barb Beckett at {bbeckett@cihr-irsc.gc.ca}[mailto:bbeckett@cihr-irsc.gc.ca].

[Andrew Kavchak]

National standards!? National standards!? Would that not require some leadership at the federal level? Would that not require a recognition that what the provinces are doing is inadequate and can be improved? Today there were two interesting articles in the media from the Pacific and Atlantic. First, in B.C. things are insufficient. And in Newfoundland and Labrador they are calling for…"national standards". And where is the federal Health Minister when you need him? One person who recently met with him (Clement) to plead for a National Autism Strategy stated afterwards "I am disappointed. It is hard to do great things with small people."
__________________________

March 18, 2008 TIMES COLONIST (VICTORIA) (FINAL) PAGE: A10 (COMMENT)

Disabled kids aren't getting the help they need in B.C.

Paul Willcocks, Times Colonist

I can't imagine anything more challenging than being the parent of a disabled child.

It's not just the effort, the commitment that goes into making sure your child has the best life possible. Not just the exhaustion and expense and emotions and the toll on other relationships.

The parents also know that someday they won't be there. And then what will happen to their children, who can't care for themselves?
We've accepted the idea that this is a shared responsibility. That when parents can't cope, the government will provide help. Therapy and support, perhaps places children can go occasionally while their parents have a small break, sometime specialized residential care.
Most of us would want to be there for those families.

But the provincial government isn't doing a good job. It's even ignoring a 2007 B.C. Court of Appeal decision that found the government has been breaking its own law by denying help to those who need it.

Mary Ellen Turpel-Lafond, the Representative for Children and Youth, has just reported on how well we're doing in supporting these children and families.

It's not great news.

Families who decide they need help can't figure out where to go. They face a "complex, fragmented service delivery system." That's a big barrier if you're already spending every waking moment caring for your disabled teen.
It's often not even clear where they should start. The Ministry of Children and Families and Community Living B.C., the government's agency delivering services to people with developmental disabilities both have roles, too often poorly defined.

Even if families can find their way to the right office, the problems aren't over. Turpel-Lafond found wait times — or getting needed help at all — are a significant problem.

No one really knows what's going on. Or, as the representative puts it: "There is insufficient public accountability and measurement of child and youth outcomes. At present, with respect to CLBC and MCFD services to children and youth with special needs, it is not possible to decipher who is getting what services, by whom, at what cost and with what outcome. "

And there is the government's shame. It insists that once people turn 19, they are generally ineligible for help if they score at least 70 on an IQ test. Only five per cent of the population has IQ scores that low.

The policy discounts other problems that might keep them from making their way successfully — fetal alcohol syndrome, autism, ADHD, big psychological problems.

The B.C. Supreme Court and the B.C. Court of Appeal have both ruled the policy violates the government's own laws.

But Turpel-Lafond says that continues to be the government's policy, despite the court ruling.
Her report includes examples that show the ridiculous destructiveness of the policy. A 17-year-old boy with a range of serious psychological and behaviour problems was removed from his last foster home after he assaulted the family's six-year-old son.

The Children and Families Ministry had nowhere for him, so social workers arranged a placement in a Community Living B.C. home. There's a lot of support and supervision, so it's expensive — $8,000 a month. He's doing well.

But he's aging out of care, as the social workers say. And although his IQ tested below 70 in the past, a new assessment put him just over the cut-off.

So, once he turns 19. Community Living B.C. says he's on his own.

Social worker and forensic services assessments say he won't make it. The young man is a risk to harm himself or others in the community once he turns 19 and the support is withdrawn, they say.
It's wrong and foolish to condemn someone to a costly failure in life to save money — especially when the long-term cost is much greater.

Turpel-Lafond has offered a useful guide for improvements. The government should welcome the help.

Footnote: Turpel-Lafond criticized policies that see help cut off for children in government care when they turn 19. "A prudent parent wouldn't send a developmentally impaired 19-year-old to the street and the state shouldn't do that," she wrote. Transitional help should continue until they turn 24, she said.
Children's Minister Tom Christensen said the policy will stand.
pwillcocks@tc.canwest.com
__________________________
from CBC.ca:

Experts call for national pathology standards to protect patients

Last Updated: Monday, March 17, 2008 | 5:18 PM

A looming judicial inquiry into how over 300 Newfoundland breast cancer patients received erroneous pathology results — and subsequent inappropriate medical treatment — is spawning calls for the development of national standards that would protect patients from such mistakes.

The medical errors made by Eastern Health authority were discovered in 2005 and led to the restesting of the results of thousands of patients.

Dr. Avri Ostry, a pathologist with Queen Elizabeth II Health Sciences Centre in Halifax, told CBC News Monday that pathologists are facing numerous challenges. These include a rapidly expanding workload along with ever-developing technology that requires constant retraining.

"I believe it is indicative of an issue that is certainly national — and that has to do with quality assurance and quality control across the spectrum in laboratory medicine," he said.

Medical experts are calling for national standards that would protect patients from lab errors. "We need to have a focused review of pathology and laboratory services in health care because this is the diagnostic heart of our health-care system," said Dr. Andrew Padmos, chief executive officer of the Royal College of Physicians and Surgeons.

"With such a review, I think we can pinpoint areas where we can innovate, areas where we can consolidate and areas where we can make amends for the lack of investment that has taken place over the last 20 or more years."

But Ostry feels that national standards would be tricky to implement as they would apply to both large academic centres as well as smaller community medical centres. "I'm not sure we could apply the same set of standards to both of them," he said.

He also says that retesting results — in which another pathologist double checks a colleague's findings —isn't always feasible either. He says in smaller centres or in labs where understaffing is chronic, there is no way to provide the necessary expertise to offer a second opinion.

The inquiry, originally scheduled for Tuesday, has been delayed because of
________________________________________

[Andrew Kavchak]

Our autism champion in the Senate raises autism several times in a speech yesterday…

Debates of the Senate (Hansard)
Tuesday, March 11, 2008

Study on Impact and Effects of Social Determinants of Health

Second Interim Report of Social Affairs, Science and Technology Committee Adopted

On the Order:

Resuming debate on the motion of the Honourable Senator Keon, seconded by the Honourable Senator Di Nino, for the adoption of the eighth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled:

Maternal Health and Early Childhood Development in Cuba, tabled in the Senate on February 26, 2008.—(Honourable Senator Cowan)

Hon. Jim Munson: Honourable senators, I want to speak briefly about the work of the Subcommittee on Population Health of the Standing Senate Committee on Social Affairs, Science and Technology. As honourable senators know, we travelled to Cuba in January to see first-hand what this tiny country is doing for maternal health and early childhood development.

That trip complemented the work of the committee, which has heard testimony from several experts over the past few months.

As Senator Keon stated when we tabled the subcommittee's report, Cuba is extraordinary in that it is a poor country with excellent health indicators. We know, for example, that poverty and health are linked. However, Cuba seems determined to prove that, at a national level at least, it is not necessarily so.

Cuba shows that poor economic indicators do not need to condemn a population to poor health. Working smart across disciplines, preventing illness and promoting health — all the stuff we know as the nuts and bolts of population health — are more than only words in Cuba. They are more than only policy. They are a way of life.

This is important for Canada, because we spend a lot of time talking about health determinants, about the need to work in cooperation to promote health and the prevention of disease, and we have had success in that respect.

When notions of national programs to improve population health in this country are put forward, such as national child care, PharmaCare, home care or a national strategy for autism, people will often talk about how expensive these programs would be. We use the argument of expense as an excuse for inaction.

Our trip to Cuba demonstrated how ridiculous this type of response is. Canada has a robust economy. We have gone 17 years without a recession. We have the eighth largest economy of the world's 183 nations. We are the only country to rack up 10 back-to-back fiscal surpluses. Economic indicators tell us we are rich. However, the rate of child poverty remains stagnant. We have the same rate of child poverty as we had in 1989.

It was interesting to go to Cuba. Cuba is a country with one of the worst economies in our hemisphere yet with some of the best indicators for child health.

According to UNESCO, Cuba has one of the best infant mortality rates in the Americas, second only to Canada's and much better than that of the United States.

We learned a great deal on this trip. We learned about the effectiveness of neighbourhood action and the polyclinics to which Senator Keon referred. "Health centres" would be a term we could probably use. These clinics have an open-door policy.

When we went to one of these clinics not only did we see people dealing with maternal care and other health issues, but there was one room in a particular clinic where 30 or 40 people, between the ages of 60 and 75, were being taught courses. We asked why. We were told that these were parents and grandparents who were looking for a degree in early childhood development. That is part of the "open door" clinic system in Cuba. That is another example of how the entire family participates in the life of a child.

It is at the neighbourhood level that health promotion and disease prevention efforts are at work. The results are clear. There are healthier mothers and children, better parenting, universal early childhood education and care for disabled children, including children with autism.

Autism is an issue which is close to all our hearts. We went to a small school with 58 students and 58 teachers. Once again, people in Canada would say such a system would be very expensive. This school was located in an environment where there were other schools and playgrounds. The children were picked up in the morning and taken to school. Therefore, there was no stigma of "you are going to be placed over here." It is a very open concept; the teachers were allowed to do their work with these young people. I was very impressed.

The school I visited for autistic children in Cuba would put Canada to shame.

I encourage honourable senators to read the report of the Standing Senate Committee on Social Affairs, Science and Technology tabled by Senator Keon. There is a lot to learn from that document.

The bottom line is that a significant amount of money is not required to effectively help children and to ensure that they get a good start in life. We learned in Cuba that when there is a will, there is a way. Canada needs the will to do more for children. With political will, we would find a way to make Canada's children healthier and better able to seize the opportunities that this great country has to offer.

On motion of Senator Keon, debate adjourned.

[Andrew Kavchak]

A new tax break for autism in the federal budget of February 26, 2008?

This was just brought to my attention, but I am trying to identify the source document and get more details…
_________________________________

"Training for Individuals with Autism or Other Disabilities

The budget proposes to expand the exemptions for basic health and education services. Training will qualify for exemption where it is supplied after February 26, 2008 and is specifically designed to aid individuals in coping with the effects of a disorder or disability. Typically, these provisions will apply to specially-designed training supplied by a government, training that is funded by a government program, or where a health care professional who makes exempt supplies identifies the training as an appropriate method of assisting an individual to deal with a disability or disorder.

This exemption is focused on ensuring that children with autism who require assistance to help them cope with the daily impact of this disorder obtain the training without the burden of GST/HST. Previously, some training required by these individuals was exempt while other forms of training were considered to be taxable."
____________________________

[Andrew Kavchak]

Wow! This is interesting! Health politics in Ontario is really stuck somewhere between the legs. The Health Minister is prepared to think "outside the box" and actually try something different for a change just to test the practicality of government programs and policies. All because he is "so serious"!

If memory serves correctly, this same Minister announced last year that he was going to have a "same sex" wedding with his partner and wear a thong during the ceremony.

Here's an idea for the Minister: one day, regardless of whether he is simultaneously testing his diapers or thongs, how about spending one day with a child who suffers from autism who did not get treatment because of Medicare's ongoing discrimination and refusal to provide the core healthcare need to this group of Canadians, and then spending another day with one who did get treatment?

From CTV.ca:

Ont. health minister prepared to don adult diaper

The Canadian Press

TORONTO — So serious is he about the welfare of seniors, one of Ontario's most outspoken cabinet ministers said Wednesday he's prepared to don an adult diaper — and use it — to satisfy himself that elderly residents of the province's nursing homes are getting appropriate care.

Health Minister George Smitherman sent eyebrows skyward when he made the straight-faced suggestion in response to critics who say the standard of care in Ontario nursing homes is so bad, residents are spending hours on end wallowing in soiled diapers.

Those complaints have prompted him to "seriously consider" taking one of the diapers commonly used in Ontario nursing homes out for a test run.

"I've got one of these incontinence products – albeit a new one, not the ones that tend to appear at committee – on my desk and I'm really giving this matter very serious contemplation," Smitherman told a group of wide-eyed reporters.

"I want to have the right policy for Ontarians."

The bizarre remarks sparked outrage among opposition parties and lobby groups who advocate for better standards in the province's long-term care facilities. The minister is making a farce out of serious questions about the dignity afforded seniors in Ontario, they charged.

"Smitherman's a damned embarrassment," said NDP critic Peter Kormos, whose leader Howard Hampton made an impassioned plea for seniors during the election campaign last fall.

"One doesn't have to use or exhaust one's imagination to understand the humiliation, the indignity of sitting in one's own waste for what could be hours at a time."

Progressive Conservative Leader John Tory called Smitherman's comments a "disgrace."

"It's some kind of a sideshow he seems determined to put on when, in fact, I think people in Ontario would say, 'George Smitherman, do something about it."'

Premier Dalton McGuinty defended his minister, saying Smitherman was only doing what he felt was appropriate "under the circumstances."

"I know where some of you may want to go with this issue and if you mention that particular word, it can draw guffaws and it's easy to make light of it," said McGuinty, who worked as an orderly before heading to university.

"I think what we all need to do is remind ourselves that this is a matter of human dignity. If this was your mother or your father or your husband, you'd see it as such."

Smitherman explained that his unorthodox proposal was intended to gain a better understanding of an issue he didn't comprehend fully.

Products designed to help adults deal with incontinence have undergone an "evolution" in recent years and have become more absorbent, making them an invaluable tool in improving the quality of life for elderly people, he said.

Some of his staff laughed at him "the first three times" he talked about the idea, but Smitherman insisted the matter is no joke.

"I said, 'How does a guy like me really actually figure out what's right about all this?"' he said. "Is a product that offers greater absorption capability an appropriate product or is that a front for some diminishment of care?"

The furor over his remarks appeared to overshadow calls for better care – calls the government has yet to answer. The indignity suffered by seniors forced to sit in soiled diapers only scratches the surface of what's wrong in Ontario nursing homes, critics say.

Some facilities are so short-staffed, residents are forced to wait for hours for meals, are put to bed too early and aren't getting enough exercise, said caregivers who work in nursing homes.

Smitherman promised that legally binding minimum standards of care for residents in nursing homes could be established within months of the Liberals taking office following the election, but that hasn't happened, said Sid Ryan, president of the Ontario chapter of the Canadian Union of Public Employees.

"If the minister wants to play silly games, well then, let him put on a diaper and sleep in it all night long and come into the legislature and wear it up until 12 o'clock," said Ryan, whose union represents nursing-home workers.

"Let him soil that diaper and lay around in it for the length of time that our seniors have to do in this province."

Smitherman said the province is improving care in nursing homes, pointing to recent improvements in meals and an additional 2.3 million hours of nursing care allocated to long-term residents.

But McGuinty wouldn't commit to CUPE's demand for a minimum 3.5 hours for resident care.

"I don't know what three-and-a-half hours represents, whether that's adequate or inadequate," he said.

[Andrew Kavchak]

February 27, 2008
THE OTTAWA SUN
PAGE: 2

Sun columnist honoured

Sun columnist Susan Sherring has won the Joan Gullen Media Award for her four-part series on autism and its impact, both emotional and financial, on families.

Named after Joan Gullen, a distinguished local social worker who has been recognized by the governor general, the award honours excellence in the exploration and reporting of significant social issues affecting the community.

"As a local reporter in Ottawa for many years, I've seen firsthand the kind of good work and dedication of community activist Joan Gullen," said Sherring. "It's really very meaningful for me to receive an award named after a woman like her."

Sherring's interest in autism began years ago when a close friend from high school, Alan Roberts, told her his son had been diagnosed. At the time, she had no idea what that meant.

When she was the Sun's Page Six columnist, Sherring covered many events sponsored by Children At Risk — a group dedicated to making the lives of children with autism a little bit better — and learned more about the subject.

Years later, Sherring says there are still many misconceptions about autism.

"I have always wanted the opportunity to explore autism further, and this series gave me that opportunity."

The series was published in December, and explores the complex issue from the family unit to the political realm.

Sherring plans to donate her prize money to Children At Risk.

"We're very proud of Sue," said editor-in-chief Mike Therien. "This is a great example of community and social journalism."

[Andrew Kavchak]

Hi Folks,
Even when the Premiers ask for a "National Strategy" on a healthcare issue the government seems to drag their heels on it. But not all "National Strategy" proposals of course…there are many others that the feds have promoted, including ones that they ran on during the last election and put money for in a subsequent budget.

Speaking of budgets, last year the Tories announced the creation of a Registered Disability Savings Plan…my contacts in two separate banks tell me that the RDSP won't be available until the end of the year at the earliest because of footdragging from the Ministry of Finance regarding the technical details and regulations to establish these plans. Thus, when the government announced last night the creation of a new "Tax Sheltered Savings Account" or something, I am left wondering whether they can at least try to complete something they announced over a year ago first before trying to duplicate it?
_______________________________
Senate Hansard
Tuesday, Feb 26, 2008.

Health

Proposed National Pharmaceutical Strategy

Hon. Catherine S. Callbeck: Honourable senators, my question is to the Leader of the Government in the Senate. The high cost of prescription drugs is a growing concern for Canadians. For people living with cancer and other serious illnesses, the costs of medically necessary medication can be financially devastating.

This issue was of such importance that in September 2004 the first ministers asked the ministers of health to develop a national pharmaceutical strategy.

The resulting task force began its work and released a progress report in June 2006. One month later, provincial and territorial health ministers called upon the federal government to commit to an ongoing partnership with them to finalize the strategy. That was 20 months ago, and it seems that there has been no movement since.

Can the Leader of the Government give any indication of the federal government's progress on this file?

Hon. Marjory LeBreton (Leader of the Government and Secretary of State (Seniors)): I thank the honourable senator for the question. As she will know, having been a premier of a province, the issue of the cost of pharmaceuticals is a complex one in Canada, given that these matters are administered by the various jurisdictions, the provinces and territories. Of course, we are well aware of many examples from province to province where people living literally 100 miles from the province next door have availability to certain drugs paid for by the provincial health care system, and, 150 miles away in another province, they are not paid for by the provincial health care system.

With regard to the specific recommendations made to the Minister of Health, I will take that question as notice.

Senator Callbeck: I realize that health is a provincial matter, but, as I said, in September 2004, the first ministers asked the health ministers to come up with a strategy. It has been 20 months since the provincial and territorial ministers of health called on the federal government to commit to an ongoing partnership.

In December 2006, the provincial and territorial ministers of health reiterated their need for leadership, and in a news release stated:

Ministers urged the federal Minister to be an active partner with provinces and territories in moving forward with the National Pharmaceuticals Strategy, including the development and implementation of catastrophic drug coverage, to ensure that no Canadian suffers undue financial hardship in accessing needed drug therapies.

Why has this appeal from the provinces and the territorial ministers gone unanswered for so long? Is the federal government committed to a national pharmaceutical strategy?

Senator LeBreton: The Minister of Health has worked closely with the provincial and territorial ministers of health on a great many fronts. With regard to the national drug strategy for catastrophic drugs and the different availability of pharmaceuticals in the various provinces, the honourable senator claims that they have demanded that. I will be interested to see if, in fact, all of the provinces have demanded it or whether there is some difficulty in the various provinces as to what their role would be.

Suffice it to say, this is a serious question, honourable senators, and I will be happy to find out the results of that meeting and the requests from the provinces and territories.
_____________________

[Andrew Kavchak]

Hi Folks,

I just wanted to say that I finally got my hands on a copy of Dr. Sabrina Freeman's latest book on the evaluation of autism treatments. I spent this evening going through the book. It is a substantial text which will take a few days to thoroughly absorb, but my scanning it this evening was one of those rare cases when a new book is so good that the time to read a page was shortened by the excitement and my impatient desire to get to the next one!

The text is a beautiful masterpiece that deserves to be a classic in the field and a "must read" for every parent, particularly those who have children that were just diagnosed. In fact, for any parent of a newly diagnosed child, the text should probably be recommended as the first book to obtain and read.

As was said in a previous message, thank you Sabrina for this wonderful contribution to humanity! Bravo! It deserves a lot of good reviews and I sincerely hope that the demand for the text will outstrip the supply so that it goes into many reprints!

Andrew Kavchak
Ottawa

[Andrew Kavchak]

Meanwhile, at the other end of the country…

Families dealing with autism are in crisis: senator Munson leading charge to get more help from government to improve services for families

WAYNE THIBODEAU

The Guardian

Michelle Pineau had her suspicions but she was hoping it was something else.

Her two-year-old son’s speech was not developing normally. But educators and health care workers simply blamed his late development on being a boy.

Matthieu, now eight, was later diagnosed as autistic.

“A lot of parents experience being told ‘wait and see’, ‘he’s a boy, boys develop more slowly than girls’,” Pineau said.

“I really had to push to advance things, to get a diagnosis. That was frustrating.”

Autism is a complex developmental disorder that typically affects a person’s ability to communicate, form relationships and respond appropriately to the environment. It results from a neurological disorder that impedes normal brain development in the areas of social interaction, behaviour and communication skills.

There is no definitive cause or cure for this lifelong disorder, which affects four times as many boys as girls and usually manifests itself during the first three years of life.

According to the U.S. Centers for Disease Control, the incidence of autism is now one in every 150 births. Autism is now more common than Down syndrome, childhood cancer and juvenile diabetes.

An Ottawa senator said families dealing with autism are in crisis.

Jim Munson has led the charge nationally for improvements in services for children with autism.

Munson was part of a Senate committee that, last March, produced a report called, “Pay Now or Pay Later, Autism Families in Crisis.”

“There are families on the Island who are suffering silently,” said Munson, who is originally from New Brunswick and spent 30 years as a reporter for CTV. He was on the Island this week.

His son, Timothy James Alexander, motivates Munson. Timothy was born with Down syndrome. He died shortly before his first birthday.

“There was a time when Down syndrome or intellectually challenged children were put aside. Look what’s happened in that community.”

Parents on Prince Edward Island continue to struggle to find the services they so desperately need.

But Pineau is more hopeful now than ever before that those services may be forthcoming.

Two days after Premier Robert Ghiz took office, Pineau received a telephone call from him. He wanted a meeting with Pineau and others who have been affected by autism.

Pineau said she’s hopeful the Liberal premier will implement a provincial strategy to deal with autism. She said the province can’t wait for the federal government to act.

“I’m very optimistic that there is a new era of collaboration in the province,” she said.

“Maybe we become a leader in the region, or even nationally, in the delivery of autism services. We can certainly encourage other provinces by taking the lead ourselves.”

Munson said he’d like to see the federal government take the lead so there is not a patchwork of programs and services.

He wants to see a national autism strategy.

Alberta is now the leader across Canada, providing up to $60,000 annually to a child with autism up to the age of 18.

In P.E.I., provincial help comes to a halt at the age of six. There is also a lot less money to provide services to children with autism.

“It’s expensive but buying tanks is expensive too,” said Munson.

“What we have now is a patchwork, scattergun approach to dealing with autism in individual provinces.”

Matthieu Pineau is now a vibrant young boy. He’s a Grade 3 student at Ecole Saint-Augustin in Rustico.

Luckily, Pineau’s son has not needed medications to treat his autism and he’s enjoying school life.

“He’s doing well since he started school,” his mom says.

“He’s coming along. He’s making marked progress.”

wthibodeau@theguardian.pe.ca

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