[Andrew Kavchak]

Senate Hansard
Tuesday, November 25, 2008.

SENATORS' STATEMENTS

National Child Day

Hon. Ethel Cochrane: Honourable senators, yesterday this chamber was alive with the music and voices of children as more than 250 local students came together to celebrate National Child Day. I was pleased to join with Senator Munson and Senator Mercer this year in helping to organize this wonderful event.

The theme of this year's event was "Striving for Success," and let me say that success was all around us yesterday. We were treated to many motivational presenters and performers.

Among them was Becka DeHaan, a visually impaired musician from New Brunswick who simply dazzled us with her performance. Joining her were 2008 Team Canada Olympic members, Angus Mortimer and Kristin Gauthier, who spoke with passion about the long road to reaching their Olympic dreams; and our keynote speaker, veteran CBC Sports broadcaster Scott Russell, who reminded us that on the pathway to success, it is the journey, not the destination, that matters most.

Honourable senators, I was especially pleased to present this year's Awesome Kid Award to Anthony Curkeet-Green. Despite living with autism, Asperger's syndrome, attention deficit hyperactivity disorder, a speech/language disorder and having been bullied, Anthony has blossomed both personally and academically. In addition to his studies, he currently shares his time as a counsellor-in-training at a local respite centre and he is also an assistant tae kwon do instructor.

He spoke of the importance of having self-esteem and how, as he said, "If you put your mind to it, anything is possible."

Honourable senators, this event was tremendously uplifting and inspiring. We have received heartening feedback from many of those who attended. I thank all the students, schools, presenters and performers who took part. To the staff members who helped with this special event, I offer my sincere thanks.

ORDERS OF THE DAY
Business of the Senate

World Autism Awareness Day Bill

Second Reading—Debate Adjourned

Hon. Jim Munson moved second reading of Bill S-213, An Act respecting World Autism Awareness Day.—(Honourable Senator Munson)

He said: Honourable senators, I wish to acknowledge the generous comments of Senators Meighen and Senator Champagne on my new position. They were appreciated very much. If I keep this up, I could be Prime Minister one day. I am the most accidental politician you will ever meet.

Senator Segal: There is still room in the leadership. It is still open. Finally, a real choice!

Senator Cordy: The record is not good.

Senator Munson: The Senate is a good place to start.

Honourable senators, it is late in the day, but I wish to speak briefly about Bill S-213, respecting World Autism Awareness Day. In the previous parliament, when I introduced this bill, it received warm support from Senator Oliver, Senator Keon, Senator Mercer and former Senator Trenholme Counsell. They were all generous in their support and remarks. I thank Senator Oliver for once again seconding this bill.

I have since travelled across this country, talking to and working with many autism groups. Recently, I was in Montreal. When I go out, I speak about a national program. We need national leadership. We raise money, $30,000 here or $40,000 there, for various hospitals and research, but there must be a bigger plan, and this bill will go a long way in terms of focusing attention.

I was disappointed that Parliament prorogued before the bill could be referred to committee. It is my hope, honourable senators, that we can move this bill forward, given the light legislative agenda that we have right now, and focus on it in committee.

This bill will raise awareness about autism, a neurological condition that affects a growing number of families in this country. Autism now affects more children worldwide than pediatric cancer, diabetes and AIDS combined. One in 165 families is living with autism, and they need our help.

Autism isolates those who have it from the world around them. Many different therapies are available, but waiting lists are long, and many treatments are not covered by our own health care system, which is a good system. While we do not know very much about autism, we do know that the earlier treatment can begin, the more successful it tends to be.

Imagine for a minute how stressful it would be to have a child with autism and know that they will not receive treatment for several months or even years because of waiting lists in the province of Ontario. Imagine, honourable senators, the anguish that would cause. It is a tragedy when people with autism do not receive timely treatment because it means that they are denied the tools they need to succeed and contribute to society.

Waiting lists are not the only barrier to treatment, honourable senators. Cost, too, is a factor. Treatment for autism can cost up to $65,000 a year. Every province has a different approach to funding treatment. Far too many families have to remortgage their homes, get a second job or make other sacrifices to ensure their child gets the treatment he or she needs. You have probably heard about them personally in your own jurisdictions.

The costs for society also increase when treatment is lacking, as honourable senators learned during the Standing Senate Committee on Social Affairs, Science and Technology inquiry into autism that resulted in the report Pay Now or Pay Later: Autism Families in Crisis.

We learned during that study how autism also isolates those around a person with autism. One parent must often give up a satisfying and well-paying career to be a full-time caregiver and advocate for their child with autism. Financial strain, fatigue and constant worry for their child erode the mental and physical health of parents. They need our help, too.

This is a modest bill, to respect World Autism Awareness Day. I know it will not change their reality — their day-to-day struggle to find and pay for care — but if a nation, for one day, acknowledges their reality, they will not feel so alone.

On April 2, World Autism Awareness Day, people with autism and their families will feel the respect and admiration they deserve from their fellow citizens. Such a day will show support, but it will also send a message about autism to those who do not know about this condition. It will be an opportunity for people to learn about autism and recognize that, in their community, there are families living with autism — neighbours, friends and colleagues who deserve to have their reality acknowledged and supported.

Before we can celebrate World Autism Awareness Day, we need to pass this piece of legislation. It seems appropriate to speak to this bill today, just one day after this very chamber was filled with hundreds of school children who came here to celebrate National Child Day with us. The theme, as Senator Cochrane said earlier today, of National Child Day was striving to succeed. All children have the right to succeed and we, as adults and law makers, have the responsibility to ensure that they have the tools and opportunities that they need to succeed.

Senator Cochrane mentioned one of our special guests who stood here on this floor. I wish you were all here to hear what he said. Anthony Curkeet-Green has Asperger's. He stood in front of us, and we witnessed what he had to say, which was basically that more needs to be done. There have been recent provincial cuts in educational assistants in the classrooms and occupational therapists. This is not a place to cut. We are a caring society. Every teacher makes a difference. We should be thinking of Anthony when we think of World Autism Day.

In closing, I remind honourable senators that Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities. These international conventions commit us to take action to see that persons with disabilities enjoy a full life in conditions that ensure dignity, self-reliance and full participation in society.

Let us take one more step forward, honourable senators, and join the 192 other countries in the world that have made April 2 World Autism Awareness Day. Thank you.

On motion of Senator Keon, debate adjourned.

[Andrew Kavchak]

Hi Folks,
Well, now that Parliament is back in session, we can expect our champions in the House and the Senate to speak up. Below is a clip of from yesterday's Senate Hansard with news of Senator Munson tabling a Bill to permanently put autism on the calendar. This morning I had the good fortune of meeting Peter Stoffer, MP. I sent him the letter below. I understand that Mr. Stoffer's previous private members' bills about autism are expected to be tabled in the House soon by a newly-elected MP who had experience with autism and is apparently willing to speak up about it. We'll see…
__________________
November 21, 2008.

Mr. Peter Stoffer, MP
House of Commons
Ottawa, ON K1A 0A6

Dear Mr. Stoffer,

I wish to congratulate you on your recent election victory, and also thank the people of Sackville-Eastern Shore for having once again chosen you as their Member of Parliament.

The cornerstones of Canada’s polity, including the Canada Health Act, the Supreme Court of Canada, and Parliament, have so far failed the autism community. As a parent of a child with autism, I thank you for all your efforts to raise awareness of the lack of autism treatment coverage and corresponding discrimination that currently exists in Medicare from coast to coast. You have been our champion in the House of Commons. The Private Members’ Bills that you have tabled, as well as your speeches in the House, organization of press conferences, participation in our demonstrations, work behind the scenes, and support for our community have been priceless sources of inspiration. Your efforts have also given me, and many of my colleagues, hope for a better day tomorrow.

The autism community in Canada continues to struggle for justice and its fair share. Attached is an article from a Windsor paper last week about a family who took their child to Detroit for a diagnosis because the waiting times were unconscionable in Canada, and are now engaged in fundraising to pay for treatment in the U.S. My own seven year old son had his funding for private sector treatment cut-off this past summer by the provincial ministry of social services, on the grounds that his ‘rate of development’ was not increasing. They admitted that he was developing and benefiting from treatment, but because the rate of development was not increasing, they considered him unworthy of further funding. Do we ever kick a child out of school for life because they failed grade one? When our son was diagnosed we waited for two years for funding assistance. We are now back to funding private sector treatment on our own. Is that the Canadian way?

We all pray that one day such stories will be relegated to history and that Canadian families with children who suffer from autism will no longer be orphaned by this country that we otherwise love so much. The provinces have not acted responsibly, and the federal government must demonstrate leadership, take the initiative, and address the gap in healthcare. We wish you all the best and much success in this, and all future sessions of Parliament.

Yours truly,

Andrew Kavchak
______________________________
Debates of the Senate (Hansard)
Thursday, November 20, 2008

ROUTINE PROCEEDINGS
Business of the Senate

World Autism Awareness Day Bill

First Reading

Hon. Jim Munson presented Bill S-213, An Act respecting World Autism Awareness Day.
Bill read first time.

The Hon. the Speaker: Honourable senators, when shall this bill be read the second time?

On motion of Senator Munson, bill placed on the Orders of the Day for second reading two days hence.
____________________________________

[Andrew Kavchak]

Hi Folks,

Well, once again we read of another case of a Canadian family in a Canadian urban centre crossing the boarder for autism diagnosis and treatment because of a complete FAILURE of the healthcare system in Canada to address the critical needs of children with autism with respect to timely diagnosis and access to effective treatment. And now this family has to engage in "fundraising" because our healthcare system won't pay for it.

Is private health insurance an answer? Well, no one in Canada gets private health insurance coverage for autism treatment when a kid is born for a variety of reasons. First, everyone expects their core healthcare needs to be covered by Medicare. Second, is it not illegal in this country to provide private medical health insurance?

What an embarrassment for a country that boasts its goddamned superiority to the Americans everyday regarding our "universal medicare" system. What a load of HOOEY!

This is another example that should be routinely raised in public and in advocacy sessions as the case of the poor New Brunswick teenager who was housed on the grounds of a prison a few years ago before being deported to the U.S. (again the U.S.) to be cared for in a special institution because we have no such institution in place in Canada.

These cases illustrate provincial irresponsibility and negligence in dealing with autism policies. Do we need national federal leadership on this? You bet! Are we going to get it any time soon? Not likely. I could go on, but you get the picture…What a disgraceful situation.
__________________________________
Autism fundraiser set

Windsor Star
Friday, November 14, 2008

A fundraiser will be held Sunday for a local boy who is being treated for autism in Michigan. Two-year-old Garrett Robinson is attending a program for preschoolers with autism at Beaumont Hospital's HOPE Center in Royal Oak. Garrett's mom, Holly Ralston, said she and her husband decided to have their son assessed by doctors across the border because they were facing a 12- to 18-month wait in the Windsor area.

Garrett was diagnosed with autism in Michigan this summer and his parents enrolled him in Beaumont's autism program.

The 12-week program costs about $9,600 and Garrett's initial assessment cost $2,600, Ralston said. "We just couldn't wait … knowing how important early intervention is," Ralston said.

A fundraising pasta dinner to help the family offset some of the costs will be held Sunday at the Knights of Columbus hall on Lauzon Road between noon and 4 p.m. Tickets can be purchased at the door at $15 per adult and $7.50 per child 12 and under. Admission for kids under five is free.

[Andrew Kavchak]

Hi Folks,

There was an interesting exchange in the Nova Scotia legislature yesterday along with an article in the Halifax paper (see both below). Congratulations to Jim Young of FEAT of NS for his effort in getting Nova Scotia out of the stone ages when it comes to autism treatment. Canada needs more Jim Youngs! There is also an interesting report that several autism associations from around the world, including the UK, have sent Obama their congratulations and expressed their gratitude for raising autism issues during his campaign. I just wonder whether any Canadian autism society or similar organization did so, or plans to do so as well?
___________________________
Nova Scotia Legislature
Hansard
Tuesday, November 4, 2008

MR. DAVID WILSON (Sackville-Cobequid): Thank you, Mr. Speaker. I bring the attention of the members to the west gallery. We have Dawn Morrison who joins us today. She's been a strong advocate for the autism movement here in Nova Scotia, so if we could give her a warm welcome. (Applause)

MR. SPEAKER: Certainly welcome to all those guests and all the other people who are visiting us in the gallery today.
We'll commence now with the daily routine.

HEALTH: AUTISM PROG. – STATUS

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, my question is for the Minister of Health this afternoon. Nova Scotia is seriously lacking in services for children with autism. The government's solution was the early intensive behavioural intervention and treatment program or the EIBI. I would like to table a press release from 2004 that states, "Details of the treatment roll-out plan are still in development, but it is expected that it will take about three years before the program will be fully operational within the nine district health authorities and the IWK." So my question today is for the Minister of Health. Can he explain why this program is still not fully functional and operational, leaving Nova Scotian children without services they need?

HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, I will be bringing in the report, as the member opposite knows. After a three-year period the department wishes to do a review of the EIBI Program and at that point make a decision on the future of the program, whether it worked or not, find out what the deficiencies are and try to put a cost to what a full program would look like. I will be tabling that report in the House – maybe later today, if not tomorrow – to bring to the House's attention the successes of the EIBI Program.

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI Program is helping 27 children per year in Nova Scotia. According to the Autism Society of Nova Scotia, there are approximately 1,790 children here in our province with autism and pervasive developmental disorders. That's a large number of children here in our province. So I would like to ask the minister, can he explain why after four years and over $12 million, you are only helping 27 of these 1,790 children here in Nova Scotia?

MR. D'ENTREMONT: Mr. Speaker, over the last number of years it has been a learning process, not only for the department but for the individuals who offer the service, as well as the families that are receiving that service. We will have a report that will talk about the importance of the program, the effectiveness of the program and recommendations on the future of the program. Right now, there are 117 children who have gone through the program when it does complete in the Spring and we would like to see more children go through that program, as it has been very effective.

MR. DAVID WILSON (Sackville-Cobequid): Mr. Speaker, the EIBI program has done a lot of good for the 27 children each year who are able to access it, but what about the 1,763 other children that they are refusing to help today in this province? I would like to ask the minister, when are you going to help these 1,763 children by expanding the program across this province?

MR. D'ENTREMONT: Mr. Speaker, the member opposite knows full well that, of course, there are costs related to this program as well as human resources related to this program. Finding the individuals that can offer the program in the different districts, not only here at the IWK but in the other nine districts across this province, is very difficult. It would cost a fair sum to implement that program across this province and it's one that needs to be considered during a full budget process, it is one that the department will continue to work with and work on in order to make sure that we help as many children as is feasible, and can be done with the resources that are available to Nova Scotians.

MR. SPEAKER: The honourable member for Kings West.

HEALTH: AUTISM FUNDING – COMMITMENT

MR. LEO GLAVINE: Mr. Speaker, my question is for the Minister of Health. Last July the minister claimed that autism funding had grown in leaps and bounds; one month later, the minister said that more funding was needed. The fact of the matter is that no funding is available to help families of autistic children, unless the child's name is drawn out of a hat for funding. My question to the minister is, will the minister clarify his commitment to funding and help all children with autism?

HON. CHRISTOPHER D'ENTREMONT: Mr. Speaker, as my answers to the previous question revolved around, we in the Department of Health, as well as we as a government, would like to help all the children who have autism. We speak to families just as much as the member opposite about the challenges that they have with the children and trying to find services for those children.

Again, this is a new program. I know over the last three years we have spent well over $12 million to help the 117 children that have been through the program. It would cost us, again, a fair sum in order to expand that to the full gamut of the province – again, we are receiving it in all parts of the province as well as here in metro. We would have to find resources – not only monetary, but the individuals who have to work so hard, one-on-one, with the families in order for this program to succeed.

MR. GLAVINE: Mr. Speaker, the father of an autistic child, Jim Young, recently wrote in The ChronicleHerald: Our family received no financial support for treatment – never have. Yet in the last four budgets, the government underspent in mental health programs by a total of more than $1.5 million. My question to the minister is, why isn't the government committing this money to help families like Jim Young and their children coping with autism?

MR. D'ENTREMONT: Mr. Speaker, as the member opposite fully knows, as we put a budget forward, as we try to start up new programs, from time to time some of these programs become underspent because of just not being able to find the people available to offer the services and such. Every year we try to find a way to infuse money into new programs and the EIBI program is not the only new program that people are asking for, whether it be an expansion to the diabetes program, whether it be a Pharmacare Program, whether it be another thing, so there are competing priorities here. This report that I will be tabling either today or tomorrow will show the successes, the recommendations on how to bring this program forward, and to see more children receive this service.

MR. GLAVINE: Mr. Speaker, in Monday's ChronicleHerald, the editorial board stated the difference in outcomes for autistic children, unless parents pay for the expensive treatments privately, can be tragic.

Mr. Speaker, in August the Deputy Minister had it right, calling on government to commit more funding to mental health services. She doesn't want a repeat of Nova Scotians spending 30 to 40 years in provincial care. My question to the minister, with his own deputy pushing for more funding for better mental health services, what is the minister going to do to address the gaps in autism program funding?

MR. D'ENTREMONT: Thank you very much, Mr. Speaker. I hope the member opposite is not saying that the other programs under mental health are not important. The deputy minister did have it right, because we do need to spend more money on mental health but, with the other competing priorities – and the member has these people who visit his office as well, whether it be advocates for diabetes, whether it be advocates for cancer care, whether it be advocates for whatever it is, they're all asking for millions and millions of dollars to support programs for the patients who they represent.
Mr. Speaker, again we will have a report that I believe is a good report, that shows the success of the EIBI Program and one that will have recommendations on how to enrich this program well into the future.
________________________________________
RESOLUTION NO. 4623
MR. LEO GLAVINE: Mr. Speaker, I hereby give notice that on a future day I shall move the adoption of the following resolution:

Whereas Kym Hume has been an educator for 31 years, presently serving as the Annapolis Valley Regional School Board's Autism Consultant; and

Whereas since 1993 Ms. Hume has studied all aspects of autism spectrum disorders and has educated parents, teachers, students and schools across the province, bringing the STAR program to Nova Scotia; and

Whereas Ms. Hume is the driving force behind the opening of the Autism Centre at Kingston School, which hosts all the autism programs for the Annapolis Valley;

Therefore be it resolved that members of this House congratulate Kym Hume for receiving the 2008 Sobeys Green Jacket Award from the Provincial Autism Centre, in recognition of everything she has done to promote autism awareness and education.

Mr. Speaker, I request waiver of notice.

MR. SPEAKER: There has been a request for waiver.
Is it agreed?
It is agreed.

Would all those in favour of the motion please say Aye. Contrary minded, Nay.

The motion is carried.
__________________________________
RESOLUTION NO. 4654
By: Mr. Leo Glavine (Kings West)
I hereby give notice that on a future day I shall move the adoption of the following resolution:

Whereas the Provincial Autism Centre was founded in 2002; and

Whereas this non-profit, community-based organization works towards a world in which those who have autism spectrum disorders are able to live their lives fully; and

Whereas the Provincial Autism Centre provides support and services to those who are affected by autism spectrum disorders, through education and programs;

Therefore be it resolved that members of this House recognize the significant contribution the Provincial Autism Centre has made and wish them continued success.
____________________________________
From the Chronicle Herald (ChronicleHerald.ca)

Province urged to expand autism treatment program

By DAVID JACKSON Provincial Reporter
Wed. Nov 5, 2008.

Parents of autistic children and opposition critics are renewing their demands for the province to expand an autism treatment program in light of a report saying how well it works.
Dawn Morrison, whose seven-year-old son Max received a year of treatment through the early intensive behavioural intervention program, said Tuesday that it had a huge impact on him, helping him to speak and be understood and giving him the ability to make friends.
"How can they make their way in the world without that?" Ms. Morrison said at Province House.

She said it’s frustrating to think other children who would benefit from the treatment aren’t getting it because the province doesn’t fund it for everyone.

She implored the government to cover the treatment for all eligible children, as New Brunswick does.

Health Minister Chris d’Entremont said two challenges in expanding the program are finding the extra $3 million a year to do it, plus the people to deliver the specialized one-on-one treatment.

He said the province had been waiting for a report on its treatment program.

The program, which started in 2005 and costs $4 million a year, has been a big help for the children who participated, said a report released last week.

Isabel Smith, a researcher based at the IWK Health Centre in Halifax, evaluated 27 children who completed a year of treatment and found all of them had significantly improved communication skills, better problem-solving skills and reduced behavioural problems.

Mr. d’Entremont said the department will use the report in its budget planning for next year.
There have been 117 children in the program so far, but the Health Department estimates there could be about 250 children at any given time who could benefit from it. Children are picked at random for treatment.

New Democrat health critic Dave Wilson and Liberal MLA Leo Glavine grilled Mr. d’Entremont in question period about expanding the program.
Mr. Glavine raised the case of a parent whose child was not picked for treatment and who pointed out the government under-spent its mental health budget by more than $1.5 million in the last four years.

"Why isn’t the government committing this money to help families like Jim Young and their children coping with autism?" Mr. Glavine said.
Mr. d’Entremont responded that there’s lots of competition for money.

Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.
( djackson@herald.ca)
________________________________

[Andrew Kavchak]

From: http://thechronicleherald.ca/Editorial/1088192.html

The Chronicle Herald (Halifax)
EDITORIAL

Treating autism
Tories need to step up
Mon. Nov 3 – 4:46 AM

THE provincial government deserves much praise for putting $4 million per year into a two-year-old program that a new study shows greatly benefits preschoolers with autism.

Now Premier Rodney MacDonald’s Tories have a duty to do more.

It’s no exaggeration to say that children diagnosed with autism who receive early intensive behavioural intervention often can have their entire lives changed as a result. Instead of individuals whose ability to function remains significantly impaired, thus needing state-funded support over a lifetime, people with autism who get this treatment can often contribute greatly to society.

Given the vast difference such treatment can make, it is simply unconscionable a significant percentage of preschoolers diagnosed with autism won’t get the help they need, because their names didn’t come up in a lottery system. There are not enough spots in the program, offered at the IWK Health Centre, for all young children with autism in the province, so the lucky ones get in while the unlucky ones do not.

The difference in outcome, unless parents can pay for the expensive treatments privately, can be tragic.

Officials at the Department of Health say there are no plans to expand the program. That direction, indeed, has to come from government. Last summer, Health Minister Chris d’Entremont said that more funding for autism was needed, rising to perhaps $6 million to $8 million per year. It’s now time to make that commitment.

The results of the study released last week not only show the program significantly helps preschoolers with autism. The survey also revealed that the Nova Scotia-designed approach – which uses roughly half the hours per week compared to what the literature recommends – may point to a more resource-effective way to help those with autism. Critics are right to be skeptical until further follow-up studies are done, and the research is scientifically peer-reviewed. But there’s no question that if the results are borne out, there will be huge implications for autism treatment everywhere, since a lack of resources, such as finding trained staff, is a universal issue.

In finding more funding for this transformative program, government must also not rob other patients. Given the size of the total provincial budget, and glaring examples of waste in the past, surely $4 million more can be found to end a system that now randomly denies publicly funded, life-changing treatment to too many preschoolers with autism. No one should be satisfied with such a roulette-wheel approach, not when the stakes are so immense.

Many parents left out, of course, now turn to the private sector, using up their savings – if they have any – to do what any parent would.

The preschoolers’ treatment program is not the only answer, of course, to help the growing numbers with autism within our midst. Many school-age kids and young adults with autism also need services. Diagnosis still takes far too long. But the far-reaching potential of the IWK program should be clear to all. Government should do the right thing and expand its reach immediately.

[Andrew Kavchak]

But, but, but…There's always an excuse. It works, but….
________________
From Halifax Chronicle Herald

Autism therapy works, but . . .
Province won"t expand program

By JOHN GILLIS Health Reporter

Thu. Oct 30, 2008.

A treatment program for Nova Scotia children with autism works well for those who can get it, an independent evaluation says.

But the provincial Health Department has no plans to expand the service to accommodate all those children who might benefit.

Isabel Smith, a researcher based at the IWK Health Centre, evaluated 27 children who completed a year of treatment as part of the early intensive behavioural intervention program.

She found all of them had significantly improved communication skills. They also had better problem-solving skills and reduced behavioural problems.

Autism affects normal brain development, leaving most people who have the disorder with communication problems, difficulty with social interactions and a tendency to repeat specific patterns of behaviour, according to the Autism Canada Foundation.

The Nova Scotia program, delivered around the province, involves a treatment team that may include autism support workers, speech language pathologists, psychologists, occupational therapists and social workers. The service is tailored to individual children.

Standard evaluations showed children gained more than a year’s worth of language during a year of treatment.

Tracey Avery, the mother of two children with autism, said the program would help her boys reach their full potential.

"This program has started my boys in a direction that has shaped the way that they learn in a school setting," she said in a news release. "I will never forget how Kyle began to speak after five long years of silence and how Brandon’s challenging behaviour improved with continued support."

Ms. Smith found the program had positive effects for whole families and 95 per cent of parents surveyed said they would recommend it to other parents of autistic children.

But as it stands, children are only accepted into the program on a randomized basis as spots open, said Patricia Murray, the Health Department’s director of children’s services.

The Health Department does not have current provincial numbers. But, as of March, 117 children had participated in the program since it began in 2005.

Ms. Murray said when the program was being developed it was estimated that at any given time there would be 230 to 250 children in the province who could benefit from the service.

"We’re really pleased with the outcome," Ms. Murray said, "but, at this point in time, there isn’t a plan to expand it."

The program costs $4 million a year.

( jgillis@herald.ca)

[Andrew Kavchak]

Hi Folks,

Since the Ontario government announced the start of an ABA/IBI program for kids with autism in the Social Services department in 1999 (which did not actually begin until 2000), there has always been concern about the inconsistent "discharge" criteria across the province. To be more precise, there were no discharge guidelines that could help parents understand why their kids were getting kicked out of the program and why it appeared that the service providers were doing things differently across the province. Well, a few years ago the government decided to create a "panel" to develop the benchmarks. Well, now it seems that what has been developed and made public is causing more grief. It appears that if your kids does make enough progress within a year, they are discharged. You wait for the diagnosis, you wait on a waiting list to get treatment, then after the most precious period was lost, you spend a long time developing a working relationship with therapists, and then a government assessor says that things are not picking up enough, fast enough, and you're gone. The Toronto Star has an editorial on the topic…

EDITORIAL
TheStar.com

Autism battles continue

Oct 19, 2008

Relations between parents of autistic children and Queen's Park remain uneasy after years of battles over waiting lists and eligibility for government-funded therapy known as intensive behavioural intervention (IBI).

So it is not surprising that some of those parents are wary of a recent report by an expert panel that recommends a series of benchmarks to be used to monitor an autistic child's progress while receiving the costly one-on-one therapy.

Some are concerned the benchmarks could be used to ration the program by prematurely discharging children. They also worry there aren't enough supports available for children who are deemed not to need IBI any longer.

Kevin Spafford, a spokesperson for Children and Youth Services Minister Deb Matthews, says the goal of the benchmarks is to ensure clinical decisions "are based on the best scientific evidence of which children will benefit, how long they will benefit for, and when they have reached their maximum benefit from the program." He says parents have asked for a more transparent and consistent IBI system, and points out that the expert panel included two parents.

Spafford also says the government funds many follow-up support services, such as speech and language programs, and is continually building on them.

But that may not be enough to reassure some parents, who remember bitterly the fight they had to wage against a government age cap, which used to cut off IBI once a child turned 6.

The government is reviewing the panel's recommendations. However it proceeds, it will have to do more to allay parents' fears.

[Andrew Kavchak]

From: http://www.gravenhurstbanner.com/muskokanews/article/119257

Family split apart to care for autistic son

by Karen Longwell

Oct 15, 2008

Three-year-old Alec Nicholson runs in circles and yells in a high-pitched tone. At first glance, he looks like most three-year-olds but, in April of this year, Alec was diagnosed with a severe form of autism.

His family – or the “A-team,” as they call themselves – mother Andrea Nicholson, father Aaron Nicholson and brother Ayden, five, were split apart soon after Alec’s diagnosis.

Frustrated with their struggles, Andrea helped organize a meeting of the Medicare for Autism Now Society on Oct. 9 at the Royal Canadian Legion Branch 161 in Bracebridge. Medicare for Autism Now is a national campaign focused on initiating change to government policy to make autism treatment available for all Canadians.
The urgent need to get Alec early treatment sent Andrea outside of Bracebridge in search of a place without a long waiting list.

“If we leave it (the treatment) too long, it will be a lot less affective,” said Aaron. “He can become a productive member of society.”

The only scientifically proven treatment for autism is difficult to access in Bracebridge and in many places in Canada. If he stayed here, Alec would be placed on a waiting list for two or three years. That would be too long for Alec.

“There’s a window of opportunity for children with autism,” said Andrea, “before behaviours get locked in.”

The treatment is called Intensive Behavior Intervention or IBI. To be effective, IBI must be started for children with autism as early as possible, Andrea explained.

Before Alec turned two years old, the family knew something was different. He should have been talking but he wasn’t – he didn’t even say mom or dad, said Andrea. He also has repetitive behaviours like running back and forth and yelling.

In hindsight, there were signs that Alec was different. When Andrea was nursing, she noticed he didn’t make eye contact the way his brother had. “I didn’t want to compare my two boys,” she said. However, there were differences.
It took several months to get a diagnosis. “You can imagine the shock, the fear, the guilt and the many other emotions that just came sweeping over us at that time,” said Andrea. Since the diagnosis, there has been one appointment after another and long waiting lists for everything, she said.

Andrea took the opportunity to get treatment as quickly as possible, which means living with her husband’s family during the week. Aaron has a construction business in Bracebridge and needs to stay in this area to support the family financially.

Andrea doesn’t want to name the exact location where she gets treatment because the organization asked her not to. In this community, she is able to attend three autism parent support groups and get pre-IBI for her son. Alec started speech and occupational therapy right away, said Andrea.
The separation from friends and family is difficult. “We drive home to daddy on holidays – like Thanksgiving and any other chance we can get,” Andrea said. “We miss our friends and our daddy very much.” For now, though, the family has no other choice.

“I want to see change and I want to see change fast because it is wrong that we have to be split from our family and all of our support – our friends,” said Andrea. “I want to bring all family back together and be in my home.”

Medicare for Autism Now Society’s founding director, Jean Lewis, who is from Vancouver, has been an activist for autism for more than a decade. She started soon after she learned her son has a severe form of autism.

Lewis became involved with activism because she found, at that time, the treatment was not covered under the Canadian medical system. Things have improved; Andrea’s treatment for Alec is covered, but she should be able to access treatment closer to home.

“There is no reason why Andrea or anyone in this country should be separated from their families so their child can have their core health treatment attended to – not in this country,” said Lewis. “Andrea’s story is compelling but I could tell you hundreds of stories.”

Lewis said the Canadian government should act quickly because cases of autism are increasing. “This is a national crisis of epidemic proportions,” she said. “The centre for disease control is saying that autism is one in 150 and one in every 94 boys in North America.”
In order to make a change, the society is going to ridings where the federal election race was close and asking constituents to vote for candidates who support increased access to scientifically proven autism treatment. Lewis said the riding of Parry Sound-Muskoka is home to Canada’s health minister, which is another reason to come here and speak.

Locally, New Democratic Party candidate Jo-Anne Boulding and Liberal Jamie McGarvey said yes to supporting autism, according to Lewis.

The Medicare for Autism Now Society was incorporated in August 2008. It is a national coalition of non-partisan, parents, advocates, professionals and growing numbers of other fair-minded Canadians seeking Medicare coverage for effective, science-based autism treatment, otherwise known as IBI or in some areas ABA (applied behavior analysis).

[Andrew Kavchak]

To all those who organized and contributed to the Medicare for Autism Now Society's and FEATBC's efforts during this recent election campaign, I just wanted to say:

THANK YOU!!!

Regardles of the election outcome, the effort was significant and inspiring. The day will come when justice is done. Keep the faith!

[Andrew Kavchak]

Hi Folks,

For those of you who watched the political parties leaders' debates this past week (as part of this federal election campaign), there were some quite interesting moments. One in particular caught my attention.

On the healthcare issue, in the French debates, Mr. Dion pointed out that a recent Editorial in the Canadian Medical Association Journal (CMAJ) was critical of the Harper government health policies. Mr. Harper replied by suggesting that the authors of the editorial did not represent the CMA and that they were just a bunch of Liberals.

Well, the editorial in question is published at page 739 of the CMAJ edition of October 7, 2008, volume 179(8). It was also published at http://www.cmaj.ca on September 16, 2008. The Editorial is titled "Listeriosis is the least of it" and it has seven names of authors underneath it, with plenty of capital letters after their names, including the "Editor-in-Chief".

In a nutshell, the Editorial points out that in August Canada experienced the worst epidemic of Listeriosis in the world with over 16 deaths at the time of writing. What went wrong? As with the Walkerton water impurities and the SARS epidemic, there were "systemic failures across multiple levels". The ultimate cause: risky government decisions.

Last November the Canadian government (that's Harper, right?) instituted a "strategic review" of the Canadian Food Inspection Agency (CFIA). Among the outcomes was the transfer of inspection duties for ready-to-eat meats from the government inspectors to the meat industry. Cabinet approved it. In practice, inpectors subsequently rarely entered meat plants to test for bacteria, which was left mostly to the companies.

Canada's government also left national standards for Listeria lower than in many other countries. The U.S. government (that's Bush, right?) apparently does not tolerate any listeria at all. Confronted with this reality, Canada's government did not raise the standards (by lowering the tolerated amount of up to 100 Listeria bacteria per gram of ready-to-eat foods), but instead lobbied to have America's standards lowered!!!

"Government policy errors helped bring about this epidemic." Yet, the government has taken no remedial steps beyond issuing a food recall. Instead, officials prase the success of our infectious disease surveillance system – as if 16 deaths were cause to celebrate.

"The listeriosis epidemic is a timely reminder that the Harper government has reversed much of the progress that previous governments made on governing for public health. After the 2003 SARS epidemic, the government created the Public Health Agency of Canada with a Minister at the Cabinet table. But in 2006 Harper eliminated the PHAC Minister and the PHAC seat at the Cabinet table.

"His government also left the chief medical officer of health within the ranks of the civil service, working under the minister of health. In so doing,it left our country without a national independent voice to speak out on public health issues, including providing visible leadership during this crisis."

"And listeriosis may be the least of it." The Editorial goes on to address the question of inspection at animal feed mills, avian influenza preparedness, mad cow disease,…and the fact that tens of thousands could die in an influenca pandemic. "Listeriosis pales in comparison. Overall, it would seem that, as a country, Canada is far less prepared now for epidemics than in the past."

Oh sure, Harper called for an "independent investigation" the day before calling the election. If you want to know the set-up that was and what wrong with the "deeply disappointing" structure of the investigation, just read the Editorial. Not one investigor at arm's legnth from the govenrment has been or will be chosen. No powers to subpoena witnesses or documents, etc. Don't expect anything from this investigation which the Editorial claims "will be inferior to every epidemic inquiry in recent Canadian history" (e.g. tainted blood scandal, Walkerton, SARS). The Editorial concludes by indicating that the authors are "very troubled" and call on politicians to "explain their positions".

After reading such an editorial one can come to the conclusion that some politicians really don't care much about public health issues. And others are simply dangerous. Really dangerous.

[Author]

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