[Andrew Kavchak]

Hi Folks,

Please see the article below about the creation of a new Mental Health Commission which says: "It will seek to ensure Canadians in every part of the country will have access to the best prevention, diagnostic and treatment practices."

Would our community find it worthwhile to ask the Commission to also apply their mandate to autism? Just a thought…

Andrew Kavchak
Ottawa
________________________________________________
PM officially launches mental health commission
Fri. Aug. 31 2007

CTV.ca News Staff

The Mental Health Commission of Canada, set up to erase social stigmas that prevent many from getting necessary treatment, was officially launched by Prime Minister Stephen Harper on Friday.

Harper announced the final selection of the board of directors and named former Liberal senator Michael Kirby as the commission's chairman.

The announcement was made during the 2007 International Initiative on Mental Health Leadership Exchange and Conference in Ottawa.

"The commission will improve quality of life for Canadians dealing with mental illness and their families," said Harper.

"It will seek to ensure Canadians in every part of the country will have access to the best prevention, diagnostic and treatment practices."

Harper also said chairs have been selected for a Canada-wide network of advisory committees, set up to concentrate on specific areas of mental health in support of the board.

"Together they will lead a national campaign to erase the stigma attached to mental illness," said Harper.

"They will also serve as a national clearing house for information on the best medical practices for dealing with it."

The commission had been previously announced and the federal government committed $55 million over five years in its last budget.

"I can tell you that there is already widespread enthusiasm for the creation of the commission," Kirby said in a press release. "I cannot count the number of offers of help and proposals for collaboration that have already flooded in."

The creation of the commission was a key recommendation of a Standing Senate Committee report on mental health, mental illness and addiction in Canada.

On Thursday, a new report from the Canadian Institute for Health Information found that mental disorders account for more than half of the hospital stays among the homeless in Canada.

In 2005-2006, the study found that mental health disorders accounted for 52 per cent of acute care hospitalizations in Canada (outside Quebec).

Additionally, 35 per cent of homeless people who visited selected emergency departments (EDs), mostly in Ontario, were treated for mental and behavioural related disorders.

[Andrew Kavchak]

Autism mentioned twice in the House…including a tabling of the autism treatment petition! This must be the 86th time, although it has been a while. Perhaps a new flurry of tablings might help keep the item on the front burner?
___________________________
House of Commons
Hansard,
Friday, May 18, 2007.

ORAL QUESTIONS

Summer Jobs Program

Mr. Michael Savage (Dartmouth—Cole Harbour, Lib.):

Mr. Speaker, yesterday the human resources minister admitted what Liberals have been saying in this House for a long time. His new summer grants program is a disaster. It is a disaster for students and for scores of not for profits across Canada. His own ministers are now saying the same thing, one in New Brunswick as we speak.

The previous program was working. This new one is not, denying autism organizations, seniors and disability groups, youth recreation, child care agencies, and thousands of others.

Will the minister adjust his criteria today and follow the Leader of the Opposition, who yesterday announced that a Liberal government would immediately restore full funding to the summer career placement program?

Hon. Monte Solberg (Minister of Human Resources and Social Development, CPC):

Mr. Speaker, I want to remind the member that the entire $77.3 million that was dedicated last year to not for profits has been dedicated to not for profits again this year. That is an important point.

I also want to remind him that every year groups must apply and demonstrate that they are providing good quality jobs for people. The point of this is to provide jobs for students.

As I said yesterday, in some cases there are sympathetic groups who appear on the face of it to meet the criteria, but have not been approved. We are looking at those groups.

___________________________

Petitions

Autism

Mr. Peter Julian (Burnaby—New Westminster, NDP):

Mr. Speaker, the second petition calls upon the government to amend the Canada Health Act and corresponding regulations to include IBI and ABA therapy as a medically necessary treatment for children with autism. The petition is signed by residents of Burnaby—New Westminster and other areas in the Lower Mainland of British Columbia.

[Andrew Kavchak]

House of Commons
Hansard
Thusday, May 17, 2007

Criminal Code

The House resumed consideration of the motion that Bill C-10, An Act to amend the Criminal Code (minimum penalties for offences involving firearms) and to make a consequential amendment to another Act, be read the third time and passed.

Mr. Paul Szabo (Mississauga South, Lib.):

Mr. Speaker, I know that the member is quite familiar with FASD, fetal alcohol spectrum disorders. She also knows that there is a prevalence of criminal activity among those who suffer from that mental disability and, indeed, mental disabilities in general.

I wonder if the member would care to comment on the fact that rehabilitation would not be applicable in terms of these particular persons who may be convicted of crimes. Exactly how do we help them if they are automatically subject to a mandatory minimum sentence to an institution, where rehabilitation is the activity that goes on during that period? Obviously there are cases where incarceration in the general prison population is not applicable. She may want to comment.

Ms. Penny Priddy:

Mr. Speaker, I would be pleased to do that. There are many pieces to this, but it goes back in part to the fact that appropriate supports need to be in place much earlier. I know that the member is very familiar with this and he knows this. Those kinds of appropriate supports for people with FASD, FASE and autism need to be in place much earlier.

I am still waiting for the autism strategy from the government and I am still waiting for a FASD strategy from the government, but surely we do not wait until those folks find themselves in a position of having picked up a gun. That is where those prevention programs are so critical.

That is why without those prevention programs this will not be a successful initiative. We must have those in place.

It does not mean that I will not support this bill, but I am very vocal in saying that we need those supports in place early on. We should never even find ourselves in the position of having someone with a severe mental disability, or with FASD or any of the other disabilities we could name, in front of a judge, with the judge having to think about sentencing for somebody who indeed may not be able to reason that out.

[Andrew Kavchak]

Autism came up in both the Senate and the House of Commons yesterday.
________________________________
Debates of the Senate (Hansard)
Wednesday, May 16, 2007

Autism Society of Nova Scotia

Cutback to Funding for Jobs at Summer Day Camp

Hon. Jim Munson: Honourable senators, I rise on a troubling issue. Today I will read excerpts from the Halifax Chronicle-Herald. As honourable senators know, autism is a passion in my life since committees here in the Senate issued a report Pay Now Or Pay Later, Autism Families In Crisis, dealing with families with children with autism.

The excerpts of the article are:

Autism group has no cash for camp.

More than 40 autistic Halifax children may be left home for the summer because of changes to a federally funded student job program.

The Autism Society of Nova Scotia found out Monday afternoon it will not receive money through Canada Summer Jobs to hire staff to run its summer day camp.

Society executive director Vicky Harvey is scrambling to try to save what she terms an 'innovative and special program.'.

For the past five years, the society has run a summer day camp in July and August.

'These are kids who are significantly affected by autism,' Ms. Harvey said.

Besides giving children aged six to 16 a chance to attend a structured program, it also gives their caregivers a summer respite. But since last year, the federal program has had a name change — it used to be called Summer Career Placement — and has been revamped.

Funding is determined by a point system. . . .

Last year the autism camp had 30 staffers. Seven of those positions were funded through Service Canada. . . .

As Ms. Harvey goes on to say:

'We just finished interviewing quite a few people.' It costs about $110,000 to run the camp.

She said that she would be very disappointed to feel that we could not run this camp again this summer.

I would like the new Government of Canada to take a deep breath, to take a look at these particular student placement programs, and take a look, for goodness' sake, at their own website, Summer Work Experience. It says:

Canada Summer Jobs, a new initiative, provides wage subsidies to help Canadian employers of not-for-profit, public sector, and smaller private sector organizations with 50 or fewer employees create career-related summer jobs for students between the ages of 15 and 30 at the start of employment.

The initiative is specifically designed to help students having trouble finding summer jobs because of where they live and/ or other barriers.

I urge you to take a look at your program and for goodness' sake take a look at what is going on in Nova Scotia, and listen.

__________________________

House of Commons

HANSARD

Wednesday, May 16, 2007

Summer Career Placements Program

Mr. Michael Savage (Dartmouth—Cole Harbour, Lib.):
Mr. Speaker, FANE is a francophone organization.

What can the minister possibly have against the YWCA, the Canadian Diabetes Association, the Canadian Cancer Society, the Elizabeth Fry Society, and arts groups, all of which are non-partisan, non-profit organizations across Canada?

Last year the Autism Society of Nova Scotia had seven positions. This year? Nothing.

Organizations like these have a question for the government: “Why is the government shutting us out?”

When will the minister restore full funding to this program? When will he do what is right for these organizations across Canada?

Hon. Monte Solberg (Minister of Human Resources and Social Development, CPC):
Mr. Speaker, I guess the question is why the previous government routinely shut out thousands of groups every year that it did not fund.

The member speaks of autism. I want to point out that the Autism Resource Centre in Moncton will receive $29,000 this year from this government. Previously it got only $9,000.

This government is stepping up to the plate, helping groups that need the help and, more important, making sure students get the work experience that they need to succeed.

[Andrew Kavchak]

Meanwhile, over at the other end of the country…
___________________________________________

Ask the candidates to help kids with autism

The Guardian(Charlottetown)

May 15, 2007.

Editor:

The parties in the upcoming P.E.I. election race should take notice of the growing number of autism cases in this province. Today, one in every 150 children is diagnosed with autism. This makes it more common a diagnosis in children than pediatric cancer, diabetes and AIDS combined.

The standards for dealing with autism spectrum disorder in this province are unacceptable. The three biggest problems faced by parents who have children with this disorder are:

1. long wait times for diagnosis;

2. the needless red tape involved with income testing families for services; and

3. the absence of a pediatric doctor on P.E.I. who specializes in autism or its related disorders.

International autism specialists universally agree that early intervention is the most important aspect to treating a child. Our child was diagnosed in the fall of 2004. He sat on a waiting list to have early intervention, and he did not get into this program until the following September – a full year. Our government, in its inaction, is fostering an environment that makes parents struggle more than is necessary and leads children down a path of life-long struggles.

The second major issue we parents of autistic children face is the province's income testing – a required step to determine level of governmental support for required services. This policy, which seems to be modeled after the American health- care model of pay-per-service, causes unjust strain on middle-class families and working poor.

We believe the system should offer the same services to these children whether parents are rich or poor, giving all children who suffer from autism spectrum disorder the same access to early intervention programs.

Thirdly, this province has no doctor who has up-to-date training in the field of autism. With diagnoses this high, this must change. Autism is a worldwide epidemic, and the health-care system of P.E.I. is doing nothing substantial, seemingly intimidated by the immediate cost of treatments and programs.

Autism is happening at an alarming rate. We challenge the parties to enact significant policy reform to help these youths. When the parties' candidates are knocking at your door, ask them about and challenge them to finally help the families of autism.

Jeff and Helena Reeves,
Charlottetown,
parents of a five-year-old autistic child,
members of the Autism Society of P.E.I.

[Andrew Kavchak]

Senator Art Eggleton and autism treatment advocate Dr. Sam Yassine were interviewed for an autism report that is available online at:
http://www.voiceprintcanada.com/component/option,com_mtree/task,listcats/cat_id,75/Itemid,68/

___________________________________
Debates of the Senate (Hansard)
Thursday, May 10, 2007

Study on Funding for Treatment of Autism

Report of Social Affairs, Science and Technology Committee and Request for Government Response Adopted

On the Order:

Resuming debate on the motion of the Honourable Senator Eggleton, P.C., seconded by the Honourable Senator Watt:

That the twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Pay Now or Pay Later, Autism Families in Crisis, tabled in the Senate on March 29, 2007, be adopted; and

That, pursuant to rule 131(2), the Senate request a complete and detailed response from the government, with the Ministers of National Revenue, of Intergovernmental Affairs, of Health and of Finance being identified as Ministers responsible for responding to the report. —(Honourable Senator Cowan)

Hon. Jim Munson: Honourable senators, I recognize that it is late in the day but I do want to speak to this motion and move it forward. I rise to speak about a subject that honourable senators know I care passionately about. The subject, of course, is autism. I endorse the remarks made by the Honourable Senator Eggleton, who provided details about the Twelfth Report of the Standing Senate Committee on Social Affairs, Science and Technology entitled, Pay Now Or Pay Later: Autism Families In Crisis. He shared some examples of the heart-wrenching testimony we heard during the committee's work, especially the testimony of parents who, day in and day out, deal with the demanding and difficult task of providing care, finding care and buying care for their children with autism. He also shared the very positive experience of hearing from adults with autism, who were able to tell us how autism has affected their lives and about the treatments they did or did not receive.

I am proud of this report and the attention it has drawn to this pressing issue that affects one in 160 families in this country. We learned a lot from individuals and families affected by autism but the inquiry also allowed us to learn something about ourselves and about our system of government, and that is what I will focus my remarks on today.

Autism is a complex condition that affects people differently and in varying degrees. It is a baffling condition that challenges us because it overlaps so many areas of responsibility and jurisdictions. We tend to think of autism as a health issue because it is considered a neurological disorder, yet the treatment for autism involves a whole range of professionals beyond the field of medicine. Teams of educators, therapists, social workers and counsellors must all come together to help individuals and families with autism.

Unfortunately, this is where we, in Canada, stumble and fail far too many people. Let us remember that our health care system was brought into being some two generations ago and was designed to fund care provided in doctors' offices and hospitals. At that time, autism was seldom seen, and when it was diagnosed, it was considered to be a psychiatric disorder.

Honourable senators, now we know that autism is not an illness that can just be treated in hospital or in doctors' offices. It cannot be cured with a prescription or a vaccination. No surgical treatment that we are aware of will help people with autism connect with the world. While there may not be complete consensus among professionals and families with autism about the best treatment options, one thing is clear: A multidisciplinary approach that includes the medical and educational systems and social services is what works best.

Unfortunately, getting those sectors to work together and funding those sectors to work together is not something that Canada does best. Autism demands a new approach; it needs a new box of policy tools to help individuals and families affected by autism. Right now, in Canada, we spend too much time explaining why we cannot help people; we offer the tired arguments of provincial and federal jurisdiction as an excuse.

From my perspective, the time has come to spend less time offering excuses and more time finding solutions. This means abandoning the jurisdictional shell game. Of course, funding for health and education is a provincial concern. That is a fact, but so what, honourable senators? That does not reduce the number of people with autism. That fact does not help families who are going broke paying for expensive treatment for their children.

One of the recommendations of the committee's report is that a federal-provincial-territorial meeting be held to develop a national strategy for autism. We also recommended that people with autism and their families be at the table.

It is essential that this meeting take place and it is vital for any national strategy to tackle the tough issues relate to treatment. As honourable senators know, treatment for autism in Canada depends on where one lives. In Alberta, there is funding to help families and many families are pulling up stakes from other parts of the country — the Maritimes and Ontario — and moving to Alberta to have access to treatment. It is another much sadder kind of Calgary Stampede.

However, a problem arises when they get there because Alberta, a victim of its own generosity, perhaps, does not have enough therapists to provide the necessary care. In Ontario, there are therapists but children languish on waiting lists because of lack of funding.

Honourable senators, my point with these examples is that the barriers that prevent us from helping individuals and families with autism are not insurmountable. In fact, they are administrative and bureaucratic in nature. It is about who pays and who does what. That is not difficult to figure out. It requires commitment, an open mind and a willingness to do things differently. We have the tools to address the problems but we have to use them in a different way.

This is the challenge we face. It is my hope that the government response to the committee's report will reflect a willingness to take a new approach and to do things differently. I mean this seriously. By calling itself "Canada's new government," this government must meet the challenge of doing things differently to help the one in 160 families affected by autism.

This is our greatest challenge. The other recommendations in our report are easier to address. Autism is difficult to diagnose and, for now, impossible to prevent since we do not know its cause. Our report was very clear. Research to understand the causes of autism must continue.

We must also ensure that the research already done on autism and its treatments is available to those who need it, particularly the parents of autistic children who are often overwhelmed by the volume and sometimes contradictory nature of the information available.

Research is essential, as is access to information. Everyone supports this initiative.

In closing, allow me to repeat: The priority that all honourable senators hear from the parents is to make treatment accessible to more children as soon as possible. As one father said to me, "My son does not need research; he needs treatment."

We have to find a way to move beyond the federal and provincial jurisdictional wrangling. We need to acknowledge at a national level that autism is a national issue that requires concerted action. If we can work with the provinces to reduce waiting times for knee and hip replacements and cataract surgery, then we can do the same for autism treatment.

It is time to acknowledge that the obstacles impeding our progress and preventing us from helping people with autism can be overcome with good ideas and a firm commitment to teamwork.

The Hon. the Speaker: Honourable senators, is it your pleasure to adopt the motion?

Hon. Senators: Agreed.

Motion agreed to.
______________________________________

[Andrew Kavchak]

Debates of the Senate (Hansard)
1st Session, 39th Parliament,
Volume 143, Issue 91
Tuesday, May 1, 2007

Study on Funding for Treatment of Autism
Motion to Adopt Report of Social Affairs, Science and Technology Committee and Request for Government Response—Debate Adjourned

Hon. Art Eggleton, pursuant to notice of April 26, 2007, moved:

That the twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Pay Now or Pay Later, Autism Families in Crisis, tabled in the Senate on March 29, 2007, be adopted; and

That, pursuant to rule 131(2), the Senate request a complete and detailed response from the government, with the Ministers of National Revenue, of Intergovernmental Affairs, of Health and of Finance being identified as Ministers responsible for responding to the report.

He said: Honourable senators, I rise today to speak about the twelfth report from the Standing Senate Committee on Social Affairs, Science and Technology, entitled "Pay Now or Pay Later, Autism Families in Crisis."

I wish to start by thanking the members of the committee who demonstrated great compassion and care toward Canadians with difficulties. This is the first study report that the committee has released since I became its chair, succeeding Senator Kirby, and I was impressed with the contributions of all members. This is once again a unanimous report, which puts forth sensible and attainable solutions to a serious problem.

As well, I wish to highlight the contribution of Senator Munson. On May 11, he began an inquiry, which turned into the order of reference that launched the study. Families across Canada owe him a debt of gratitude as he brought an important issue to the floor of the Senate.

Like most senators, I know the issues of autism from what I have seen in the media. Many stories have appeared regarding court cases, perhaps some of them highlighting protests by parents or announcements by governments — which do not seem to satisfy anyone. However, I did not really understand the depth of the issue.

Those stories do not fully portray the frustration and fear that parents of autistic children have. After hearing from researchers, interest groups, parents and autistic individuals, I can say that I better understand. Hearing the stories pulled at my heartstrings, but they showed the reality of the situation and proved that it needs our immediate attention.

We heard from parents and what they see in their children in crisis, with very little help forthcoming. The reaction of each of us when something threatens our children is to protect them.

Laurel Gibbons, a mother with a nine-year-old autistic son, testified that instead of using her son's health care card to access treatment, she relied on two other cards: her library card to research autism, and her Visa card to pay for treatment.

She added:

We were going to have to pay for any interventions, including ABA, as well as the recommended speech and occupational therapy that ran into thousands of dollars.

After re-financing our mortgage three times in the last four years, the money has run out. The speech therapy has stopped, as did the occupational therapy for his sensory issues. . . . We are still doing what we can piecemeal. I worry every day that I may have to relinquish my custody of him and hand him over to social services because he becomes unmanageable.

Honourable senators, after hearing that, how can we not act? How can governments not support these parents and how can we not expect parents to be frustrated or angry?

Treatment, honourable senators, can cost $60,000 a year, the committee was told time and time again. There is varied support from the provincial and territorial governments. Certainly, it is not equitable across the country. The majority of that $60,000 is coming from the pockets of parents.

The committee was pleased to hear from a number of adult witnesses who have autism. Their testimony was inspirational and touching, and it showed what the results of detection and treatment can mean. Their testimony leads to some of the recommendations contained in the report.

Mr. Kristian Hooker, from Selkirk, Manitoba, spoke to the issues that persons with autistic spectrum disorder face. He said:

A big problem with people facing ASD in society is that others often have a stereotype of how a person with ASD is supposed to look or behave. Many people with ASD could eliminate that stereotype but rarely get that opportunity, especially with a large group of people.

That is why one of our recommendations is for the inclusion of autistic individuals in both national public awareness campaign and the proposed symposium announced by the Minister of Health last year. It is essential that this group be represented at any table that discusses what to do to help people with autism.

Mr. Jason Oldford is 36 years old and was diagnosed in 1974. He supported the views expressed by Ms. Laurel Gibbons in her testimony when he said:

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. . . . Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in.

The testimony of people like Jason Oldford and Laurel Gibbons is the reason that the committee recommended that the federal government convene a federal-provincial-territorial ministerial conference to examine innovative funding arrangements for the purpose of financing autism therapy and that the federal government establish an appropriate level of funding — its appropriate share — in all of this. Parents are facing extraordinary costs to help their children, and what they need and ask for is help. They are asking their federal, provincial and territorial governments to help to alleviate this stress. The proposed meeting is not just needed, it must happen and must happen now.

Honourable senators, beyond these two significant recommendations of inclusion and a federal-provincial-territorial meeting, the committee further recommends: the creation of a public awareness campaign to enhance knowledge and understanding of ASD and the difficulties, the challenges and some of the great qualities and abilities that many ASD people exhibit; the creation of an autism knowledge and exchange centre and an internet-based web portal for reliable data for those seeking information on autism. The committee heard from many witnesses that there is too much confusing information.

The committee also recommends the creation of an autism research network and the provision of money for research through the Canadian Institutes of Health Research, because there remains much to learn about ASD disorders. The committee recommends that the federal government work with the provinces and territories to address the human resources issues, including training standards. The Province of Alberta provides funding, but they do not have the human resources; Ontario does not provide as much funding but has lots of human resources. There are problems right across the country of that sort, including training standards, which are so varied. As well, we ask that the Department of Finance study the implications of income splitting and other tax measures to help the families.

Pulling it altogether, the committee recommends that the federal government, in collaboration with the provinces and territories, establish a comprehensive national autism strategy, which is needed now.

The committee also noted that in Budget 2007 the government has taken steps toward helping parents — and I congratulate those who sit on the government side in this place on announcing the creation of a registered disability savings plan. However, this plan will help only some people tomorrow, not today, and today is the issue. Parents are going broke now and there is no money for tomorrow.

In the words of Jason Oldford — and I quote:

. . . if you pay for it now, look at the return you get on your investment. The people with autism will get out into the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

Pay now, or pay later. Honourable senators, that is why we need to act today.

In conclusion, I thought I would use the words of my esteemed colleague and deputy chair of the Social Affairs Committee, Senator Keon: At committee, when asking one of his questions of witnesses, he said.

Our job is to come up with a plan that is good enough that government cannot say no to it.

Senator Keon said that, in his experience, plans are turned down if they are not good enough but that if they are good enough, they are never turned down.

The report of the committee contains good recommendations that will help families across the country to deal with this growing problem. I know we could have gone further, and many people wanted us to, but we had to make recommendations that could be and should be implemented — ones that are reasonable. These recommendations help to move us in the right direction on this issue, to show parents and autistic adults that they are not alone and that they have not been abandoned.

Honourable senators, I look forward to hearing from the government in respect of this motion on the twelfth report of the Social Affairs Committee and, more important, I look forward to the implementation of this report.

Hon. Gerry St. Germain: Would the honourable senator take a question?

Senator Eggleton: Yes.

Senator St. Germain: Autism has emerged in my life. As well, I have been approached by people in British Columbia on the issue. Does the honourable senator know, through his studies with the able assistance of Senator Keon, why has this illness has been neglected in the process of treatment? Why has autism not been recognized by provincial health authorities?

Is there an increase in the number of births of children with autism? Are there any scientific projects under way to determine whether diagnoses of this illness are on the increase?

I speak with sincerity, honourable senators, because I have a niece who has two autistic children. I have seen a beautiful young woman virtually deteriorate before the family's eyes.

The information given to me by some who are active in British Columbia on this issue has clearly stated that there appears to be an increase in the number of births of autistic children. Could the honourable senator clarify that point? Did the committee's study reveal why the issue has not been addressed by provincial health authorities and Health Canada?

Senator Eggleton: I thank the honourable senator for the excellent questions. It is not clear whether there has been an increase in the number of births of children with autism. However, it is clear that there is an increase in awareness of autism, with earlier diagnosis and earlier treatment for some, but not for everyone because not everyone can afford it or access it readily. Certainly, there is an increase in awareness but an increase in the numbers is not clear from the studies to date.

With respect to health, one of the difficulties with autism spectrum disorder is that it covers more than one field. It is not only a question of health. They go to doctors and clinics, but many things would come under the social service umbrella or even the education umbrella. Also, many costs relate to the fact that many of these young people require one parent to stay at home. It is extremely difficult for both parents to work.

The Hon. the Speaker: Honourable senators, it being six o'clock, I am obliged to leave the chair unless there is consent not to see the clock.

Hon. Gerald J. Comeau (Deputy Leader of the Government): I propose that we give the senator a few moments to conclude.

Hon. Senators: Agreed.

Senator Eggleton: This is why we think we need a national autism strategy. We need to pull together the governments at different levels to work out how we can cross the lines of health care, education and social support services, and what to do about the loss of income for parents. All these things create enormous financial and emotional pressures for these people.

This is why we have suggested that we need a strategy. We need the symposium that Minister Clement recommended, which would include people in the autism field. We also need the federal and provincial governments to come together to work on this national strategy.

On motion of Senator Cowan, for Senator Munson, debate adjourned.

[Andrew Kavchak]

Debates of the Senate (Hansard)
Thursday, April 26, 2007

Study on Funding for Treatment of Autism

Notice of Motion for Adoption of Report of Human Rights Committee and Request for Government Response

Hon. Art Eggleton: Honourable senators, I give notice that at the next sitting of the Senate I shall move:

That the twelfth report of the Standing Senate Committee on Social Affairs, Science and Technology, entitled Pay Now or Pay Later, Autism Families in Crisis, tabled in the Senate on March 29, 2007, be adopted, and:

That, pursuant to rule 131(2) the Senate request a complete and detailed response from the government, with the ministers of National Revenue, Intergovernmental Affairs, Health and Finance being identified as ministers responsible for responding to the report.

[Andrew Kavchak]

Congratulations to Bev, Jean and Sab!
______________________________________
We've taught Allison to speak, to tie her shoes; This is the fifth instalment of a special series on autism. Today: the high cost of therapy, and a mother's determination
The Vancouver Sun

Apr 26, 2007
Page: A8
By: Pete McMartin
Bev Sharpe has a big anniversary coming up next month: It was 10 years ago in May 1997, that her daughter, Allison, was diagnosed with severe autism. Allison was two. Back then, the services available to parents of children with autism were more limited than they are now, and government subsidies for therapy were non-existent.
Nonetheless, after a couple of months of research, Bev decided Allison needed an expensive and intensive therapy known as Lovaas ABA. It called for up to 40 hours a week of in-home intervention with a team of therapists.
It was also horrifically expensive. Lovaas, at present, can cost anywhere between $40,000 and $60,000 a year.
Despite the cost, Bev believed Lovaas was the only therapy that could give Allison a chance at a life in the real world, and Bev was adamant she have it. It was the only treatment backed up by data that proved its effectiveness.
Since there were few Lovaas practitioners in B.C. at the time, Bev placed ads all around the Lower Mainland, hired a team of 10 applicants and paid to have them trained by a consultant Bev brought in. The three-day training session cost $5,000.
Allison started her Lovaas therapy three months after her diagnosis, on July 21, 1997.
Ten days later, on Aug. 1, Bev and her husband split.
The couple's divorce was finalized two years later.
They divided their assets, and Bev bought her husband out of his share of the house. It was a modest but comfy place on Marine Drive in West Vancouver, and it was perched on a rock ledge that afforded a knockout view of English Bay. It was there that she, Allison, and her son, Jackson, who was a healthy, normal child three years older than Allison, would face an uncertain future together.
Certainly, the recent past had been difficult enough. Allison's autism was profound. She was completely non-verbal. As a toddler, she never crawled, or exhibited any curiosity about things around her. She made no eye contact or acknowledged the presence of other people. Allison engaged in self-stimulatory behaviour, too, like flapping her hands or snapping her fingers. She resisted toilet training, and engaged in feces-smearing. She refused to sleep through the night.
Those first few years of therapy for Allison were a financial shock. The provincial government only began to fund autism therapy with any significance in 2002, but in 1997 and 1998, there was no funding, and in the first two years of Allison's treatment, Bev spent on average $25,000 each year, not counting the expense of a full-time nanny. Even at that, it wasn't enough to fund all the therapy Bev felt Allison needed.
"I couldn't afford to do the 40-hour-a-week [Lovaas] program," Bev said. "I was strapped."
She had child support of $1,000 a month from her ex, but it wasn't enough. So she worked all the overtime she could get at her job as a meat inspector. ("I believe I'm the only vegetarian meat inspector in B.C.," Bev said.) She cashed out her vacation time. She remortgaged the house, twice. She went deep into a line of credit.
It still wasn't enough.
She could have sold the house, but her team of doctors at Childrens' Hospital said Allison's domestic situation should not be changed.
She decided to take in boarders.
To do that, the house needed renovating, and Bev set about doing much of it herself. She bought or borrowed tools from her neighbours. She would come home after work and strip paint or put up Gyproc. The renovation took her two years.
She eventually took in three boarders. To do that, Bev had to give up her bedroom.
She now sleeps on a small foamy on her living room floor.
Allison's therapy, though, proceeded. In addition to going to school, Allison did (and still does) in-home therapy of 30 hours a week with a therapy team who come into the home every day. For four days of the week, she has three-hour sessions; for the other three days, she has six-hour sessions.
Lovaas therapy is rigorous, and relentless. It breaks down simple tasks into even simpler components which, to a normal child, is the stuff of their natural development — things like identifying colours and everyday objects, interacting with others, vocalization, simple math. But the subject, ideally, improves slowly and steadily by repetition and positive reinforcement.
This, Allison did.
"It's been 10 years of therapy," Bev said, "and we've taught Allison how to speak, how to tie her own shoes. She can use the toilet by herself, eat appropriately at a table with her family, dress herself, do laundry — the daily living skills."
It's also given her a chance at a future.
"The child's not in an institution," Bev said. "She has a life here.
"And the goal, ultimately, is to give her enough skills so she can one day operate in the real world."
She can, for example, take Allison out in public now, for a short time. Her record — Bev timed it — is 17 minutes at a local Starbucks. Recently, they went on their first vacation together, to Disneyland. It took five months to prepare Allison for the trip, of showing her pictures of the plane, of explaining step by step what they would do once they got on it. The trip went without a hitch.
For Bev, Allison's progress validated her decision to go with Lovaas. She became a committed advocate of it. She joined FEAT of B.C. — Families for Early Autism Treatment — and hers was one of 23 families which took the provincial government to court in the late 1990s. FEAT wanted autism recognized as a medical condition that deserved fully-funded treatment, and that treatment, FEAT maintained, should be one backed by science — in other words, Lovaas.
Lovaas was devised by Ivar Lovaas, a psychologist out of UCLA who revolutionized treatment in the late 1960s when he used the techniques of B. F. Skinner's applied behavioural analysis research on children with autism. In a study published in 1987, Lovaas found that almost half of his 19 test subjects showed improvement to the point they were indistinguishable from neurotypical children, while the majority of the other half showed some progress.
FEAT's litigation, which went all the way to the Supreme Court of Canada, will be dealt with elsewhere in this series, but in short, it essentially embarrassed the government into beginning its present system of parent-directed discretionary funding for therapy in 2002. While FEAT won a subsidy of $20,000 annually for children under six, and $6,000 annually for children between six and 18, those monies are nowhere near enough to fund Lovaas in its entirety.
But since Lovaas's paper in 1987, a kaleidoscope of therapies have been developed, some of which use applied behavioural analysis techniques.
There are now many parents in B.C. who have adopted these therapies, and who feel Lovaas is not right for their children. They dislike the idea that FEAT insists the government should fund only Lovaas, and they especially dislike the implication — encouraged by FEAT, some say — that they are doing wrong by their children by not using Lovaas.
It has led to a split in the autism community of incredible rancour. Depending how one cares to look at it, it has caught the government in the middle of a crossfire, or allowed it to play one side of parents off against the other.
For Bev, however, the proof is looking her in the face. Literally. Allison makes eye contact now. Allison has a life. Bev spent $26,000 last year on her treatment and felt every penny was well spent.
After all, she said, it was 10 long years ago that, after only after six weeks of intensive Lovaas therapy, her daughter said her first word.
It was "Mama."
pmcmartin@png.canwest.com or 604-605-2905
Colour Photo: Glenn Baglo, Vancouver Sun / Allison
Marshall's autism was profound. As a toddler, she was completely
non-verbal. She didn't crawl or exhibit any curiosity about things
around her, and she would not make eye contact or acknowledge the
presence of other people. After 10 years of Lovaas therapy, she can
go out in public, including taking a recent trip to Disneyland.
;
Colour Photo: Glenn Baglo, Vancouver Sun / A 'high-five' for a
successfully completed task.
;
Colour Photo: Glenn Baglo, Vancouver Sun / Therapist Darlene
McIntosh works with Allison to help her count money.
_________________________________________________
Mothers lead the fight against bureaucracy, courts; Dynamic duo Freeman, Lewis force government to fund treatment
The Vancouver Sun

Apr 26, 2007.
Page: A9
By: Pete McMartin
Despite what some people think of them — and there are those who would prefer not to — two of the most tenacious and heroic women in B.C. are Sabrina Freeman and Jean Lewis.
For what they did, they deserve, at the very least, the thanks of every family in the province who has a child with autism. The Order of Canada wouldn't hurt, either.
Both are mothers of children with autism.
In 1996, Freeman founded Families for Early Autism Treatment of B.C. — Canada's first autism treatment advocacy group. Lewis joined soon after.
"We exist for one reason," Lewis said, "that science-based treatment for autism be included in universal health care."
Freeman is a Stanford-trained sociologist and lives in Langley. Lewis lives in West Vancouver. Her husband, Michael, is president of the Autism Society of B.C.
More than anyone in this province, Freeman and Lewis are responsible for forcing the provincial government to fund — to the limited extent they do now — autism treatment.
As Lewis put it:
"If it wasn't for FEAT, nobody would be getting any treatment money today. If it wasn't for what our organization did, no child in B.C. — and further to that, no child probably in this country — would be accessing treatment money."
What FEAT-B.C. did was fight.
In 1998, it took the provincial government to court to have autism recognized as a medical condition that deserved full health care funding.
At the time, there was virtually no government funding of autism treatment. Families all over B.C. and Canada were having to bear the catastrophic expense of paying for their children's therapies.
The therapy that FEAT championed — Lovaas ABA, an intensive early intervention program that requires 40 hours a week of one-on-one therapy, and which FEAT insists is the only effective autism therapy backed by scientific study — cost upwards of $60,000 a year.
So in 1998, Freeman and Lewis organized a group of 30 families who took the then NDP government to B.C. Supreme Court to force the government to fund Lovaas therapy in its entirety.
FEAT won.
There was a change of government: The Liberal government of the day appealed, and the case went to the B.C. Court of Appeal in 2002.
FEAT won again.
In 2003, FEAT won a third time against the government in B.C. Supreme Court in a case similar to the first.
The Liberal government, however, which had still not followed the lower courts' orders, took the case to the Supreme Court of Canada.
In November 2004, in what was considered one of the most significant social-policy cases to reach the Supreme Court, the court devastated parents of children with autism across the country when it ruled for the province, and refused to elevate health care funding to a constitutional right.
This pleased the 10 provincial governments and the federal government, all of which intervened to warn judges that governments would have to fund unlimited budgets if health care were to become all things to all people.
Thus, the court ruling meant that parents of children who were autistic were still on their own, and the province could choose to fund or not fund autism therapy at whatever level it wished.
Still, FEAT had won a victory of sorts — the moral one.
Its six-year-long battle with the provincial government essentially embarrassed Victoria into creating a province-wide network of diagnosis and services.
It also ponied up money for therapies — $20,000 a year for children under six, and $6,000 a year for children between six and 19.
And — a critical point, this — it made those monies discretionary: it was left up to each family to choose whichever therapy they felt was best for their child.
This angered Lewis on two counts.
One, the money was nowhere near enough to fund Lovaas, or, for that matter, most other therapies.
Two, the discretionary nature of the funding, and the provincial government's refusal to endorse Lovaas as best practice, placed all other therapies on the same footing with Lovaas.
To Lewis and Freeman, it was unthinkable. Asked if she thought families who did not adopt Lovaas should be denied funding, Lewis said:
"I think so. If they are not doing best practices, ya.
"You now, if you have cancer . . . and the doctor gives you a treatment protocol to follow, you may not like it . . . and you can choose not to do it, and you can choose to take shark's fin cartilage or papaya seeds or any number of things. But the government's not going to pay for shark's fin. They're going to pay for what's best, what they know, what science says."
And Lovaas, FEAT maintains, is the therapy that has the most studies and controlled data proving its efficacy.
"There's about 32 therapies for autism," Freeman said, "95 per cent of which have no data behind them."
In describing other therapies, Freeman used the term "quackery" more than once.
"There's lots of people who do all kinds of stuff, and government actually here pays for all kinds of garbage because they're not accountable. Government doesn't care if something works. They just give money to people to go away."
Of course, many families of children with autism don't feel the same as Lewis and Freeman, and have adopted other therapies for their children.
To no one's benefit, except perhaps the government's, the result has been a rancorous split in the autism community among service providers, therapists and academics, and the families of children with autism themselves.
More on this and therapies tomorrow.
pmcmartin@png.canwest.com or 604-605-2905
– – –
See http://www.VancouverSun.com for more from the six-part series
SATURDAY: The story of a severe case, and life at home with an autistic child.
MONDAY: Two mothers, their tears, and the sacrifices they must make living with autism.
TUESDAY: How the health care system discriminates against those on low income.
WEDNESDAY: Immigrants and the special challenges they face in dealing with autism.
TODAY: The high cost of therapy, and a mother's determination.
FRIDAY: Two autistic teens and their families face an uncertain future.
Colour Photo: Glenn Baglo, Vancouver Sun / Jean Lewis, of
Families For Early Autism Treatment, says government money is
nowhere near enough to fund therapy.

[Andrew Kavchak]

Debates of the Senate (Hansard)
Thursday, April 19, 2007

Senators' Statements

Funding for Treatment of Autism

Hon. Jim Munson: Honourable senators, as you know, last month the Standing Senate Committee on Social Affairs, Science and Technology released its final report — Pay Now or Pay Later — on my inquiry on the funding for the treatment of autism.

While I am proud of that report and pleased that the Senate has brought the issue of autism to the attention of the government and to the people of this country, this is just the beginning. The next step is for the government to take the recommendations, put some policies in place and ensure that the Canadian families who are coping with this crisis are not alone.

A report is nothing if it is not backed by action. Autism affects 50,000 children and 150,000 adults in Canada, and those numbers are growing. This report draws our attention to a pressing and urgent issue — but it does not deliver treatment. It does not provide a break for families who are faced with the full-time care of a high-needs child. It does not pay the bills that are neglected because of the high cost of private autism therapy. It cannot mend the marriages that break up due to the stress autism causes in a family. The incidence of autism is a crisis that requires a national strategy.

We talk about waiting lists for surgery, cataract surgery and knee and hip replacements — and of course, we need to shorten these waiting lists. However, we have another waiting list. Children with autism across Canada are on waiting lists to get treatment. Some will never get treatment because they will not be eligible after a certain age. Some will be eligible for treatment but no therapists will be available. Others still will regress into silence and isolation after their treatment, judged no longer necessary, is withdrawn.

We recognize as a nation the need to tackle health issues together. Cancer, strokes, heart attacks, obesity, all of these health issues affect Canadians across the country and we all consider them worthy of national action and attention. My hope is that the Senate report will take us one step closer to putting autism on the list of urgent health issues that require our immediate attention.

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