[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

---

—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

---

How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Andrew Kavchak]

THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Wednesday, November 8, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 4 p.m. to consider the inquiry on the issue of funding for the treatment of autism.
Senator Art Eggleton (Chairman) in the chair.
The Chairman: The Standing Senate Committee on Social Affairs, Science and Technology continues its examination of issues involving autism, particularly with respect to the funding aspects.
We are pleased to have Mary Anne Chambers with us this afternoon. She is the Minister of Children and Youth Services for the Province of Ontario. Just by way of introduction, although some of us around the table know her quite well, the minister is the provincial MLA for the Toronto riding of Scarborough East and has been since October 2003. She served as Minister of Training, Colleges and Universities before coming into this position in 2005. She has had a long career in the private sector as well, most notably a lot of volunteer work in organizations such as the United Way, where she served on the board as the past chair of the United Way of Canada, in fact. She is the past president of the Canadian Club of Toronto, former Governor of the University of Toronto, and was vice chair of the governing council for three years. She came into the position of Minister of Children and Youth Services with support for youth services in her area, and so comes quite naturally to something that she is now involved with as minister.
Minister, I will let you take it from there for some introductory remarks, and then we will come around the table for some dialogue.
Mary Anne Chambers, Minister, Department of Children and Youth Services of Ontario: Thank you, Senator Eggleton. It is a pleasure to be here. Interestingly enough, at my first FBT minister's meeting, I actually suggested to my provincial and territorial counterparts that we get together and talk about autism on a national scale. I did that because I felt I needed help in Ontario, because this has been a little bit of a challenge for us. However, we are turning the page, and I am very happy to speak about it.
The first time I had any significant insight into autism and what it means to kids and their families was about 14 or 15 years ago when one of my sons got a job as a youth worker while he was at McMaster University. The job was to work with a 14 year old autistic boy, more as a companion than anything else. When he had his interview with Michael's mother, she said, "I look forward and pray for the day, just one day, when Michael will not hit me." My son decided that that was the behaviour he would focus on. One day, he arrived at their home, and she was in tears. He thought, "Oh, dear, what has happened?" She said, "Today, Michael said, 'You know, mom, I really do not like when you do that,'" and he did not hit her.
Autism spectrum disorders range in severity, starting from quite mild, almost indistinguishable. There are lawyers practising in this province who have ASD at the milder end. It goes to the very severe, where kids tear their homes apart and beat up their parents when they are asleep. I have photographs showing where they injure themselves very badly. There are also parents who speak about autism from the perspective of these kids simply learn differently. We concluded that no two kids with autism spectrum disorder are alike.
Until July of last year, Ontario provided intensive behavioural intervention , or IBI, therapy for kids until they reached the age of six. Very shortly after I was appointed to this ministry, in keeping with a commitment that the premier had made in 2003 during our campaign, a commitment not discontinue IBI therapy at age six, that changed. I read some of the notes from Hansard and some of the debates that you have been having on this subject. I wanted to put that on record that Ontario no longer discharges kids on the basis of age. That is the good news.
The other news is that our waiting lists for IBI therapy have grown substantially. Right now, we are providing IBI therapy to just about 900 children. Of that number, approximately 60 per cent are age six or older. We have waiting for intensive behavioural intervention therapy approximately 1,000 kids, and about 45 per cent of that number are age six or over.
This was actually a program that was designed as a preschool program, hence the age. What I have learned from what we are seeing is that parents are not satisfied with the supports that their children get in the school system. Otherwise, they would move them out of school because they really do want their kids in as normal a setting as possible. An integrated educational system is where they want their kids to be. In 2004, there were an estimated 7,000 kids with autism in the publicly funded school system in Ontario.
What we are working on is, first, greater support for kids whose families would like them to receive intensive behavioural intervention therapy, which can be anything from 14 to 24 hours a week of intensive behaviour intervention. At the same time, we are working to provide more supports beyond that that is, a continuum of services so that regardless of age or stage of development there will be services available for these kids.
We must also ensure that we have the capacity, the service providers, to support these kids. Much has been said about families moving to Alberta, but you may or may not have heard that they are not necessarily getting the service. They are getting the money for the services but they actually have a very severe shortage of service providers. We have read about Ontario families who have gone to Alberta and then said this is not what we expected.
I will come back to the financial aspect of it in a minute but in terms of building capacity in Ontario, last year we started a college graduate level program that is delivered out of nine colleges in Ontario. We are training behaviour analysts who can work as instructive therapists providing IBI for kids. We had the first cohort of 92 graduates this spring. By 2008 09, we should have 200 therapists graduating each year. We are also training childcare workers. We have a target of 1600 childcare workers to be trained so that if children are in child care facilities, the people who work with them will understand what their needs are and how to help them learn. We are also training 5,000 education teaching assistants in the school system, again because we know that these children will benefit from some one on one types of supports. We also have a school support program where we have had 180 consultants working with educators to help them understand the principles of applied behaviour analysis so they can support their students in school.
As far as the financial side is concerned, we have more than doubled spending on autism over the past couple of years. Ontario's budget for autism is $112 million per year, and that is the autism focused budget. In addition to that, we also provide speech and language therapy and other kinds of therapies for children with complex special needs, including autism, through our children's treatment centres where we have a budget similar in size to the one that is focused on autism.
Yes, it is expensive. One of the reasons why it is expensive is because of the amount of hours of therapy involved. As I mentioned, IBI would be anywhere between 25 to 40 hours per week. We average somewhere between $35,000 and $50,000 per year per child receiving IBI therapy. You have heard from parents who are aware that parents are financially strapped. Even some of the children who are on our waiting list are actually receiving services, but at their parents' expense. We hear about parents remortgaging their homes and moving into their in laws' basement. It is a very difficult situation.
We also hear about people not being able to stay in the workforce. A mother said to me other day, "Two weeks into my new job my employer said I need someone I can rely on. I cannot keep you," because she had to miss a few days to take care of her son. Her husband had had a nervous breakdown over these challenges. The day before she spoke with me she said, "I cannot handle this any more. I love our son but I cannot handle this any more." He then left.
We see cases of family break down, and we see people not being able to work, which adds to the financial hardships. This is not a condition for which there is a cure so far. We started a research chair at the University of Western Ontario towards the end of last year or early this year. The research is actually very thin on ASD, autism spectrum disorder.
I am happy to be here to provide input to the work you are doing. I am happy you are working on it. I also have some ideas as to what a national strategy could entail. Maybe I should stop now and allow you to ask me questions. Somewhere through the discussion, perhaps I can talk about some of the thoughts I have.
The Chairman: We would like to hear those. That would have been one of my questions. There are a number of members of the committee that are not here because the Senate is still sitting. Normally, we try not to have a conflicting arrangement but the Senate is still in session dealing with Bill C 2, the accountability bill. At least there are five of us here.
We will start with Senator Munson.
Senator Munson: Welcome, minister. I can hear in your voice that you are passionate about this. That is extremely important. It has reached the point where the autism situation has gone to the courts. I understand today that 35 families in Ontario are taking the Ontario government to the Supreme Court. They have appealed. They are saying that the Ontario Court of Appeal made several areas in its judgment this summer. Would you care to comment on that?
Ms. Chambers: It was 27 families, with 33 kids, who had launched the case a few years ago. It was with regard to the age cut off. When our government came into office, the court hearing continued. It was continued on the basis of jurisdiction that is, who has jurisdiction over the determination of how public resources should be allocated? The Court of Appeal determined that it is the government that has that responsibility. The Court of Appeal for Ontario ruling indicated that the government was not obliged to provide services for children beyond age six and older.
In fact that was an exercise about jurisdiction. As a matter of fact, we are providing services. As of July last year we have been providing services for kids, IBI for kids, including services for those families, age six and over.
I will continue to go along that route. That is our commitment and that is what we think is the right thing to do. The court case has been one of jurisdiction and it has not changed our delivery of support to these kids beyond the age of six.
Senator Munson: Since this case is now before a court again I will not go any further there, but you did talk at the very beginning of our discussion about your own ideas at the beginning of a national strategy and dealing with this. You said you actually suggested that there maybe should be a ministerial conference. Do you still believe that should be done and would you call for one?
Ms. Chambers: I actually spoke about it with my provincial and territorial counterparts. I did not get a lot of interest in it. Alberta said they were doing fine, thank you very much. I do not know if I was the only one but I was the one who expressed an interest and a need. I do not know if you have heard otherwise from speaking with ministers in any of the other provinces or territories but the interesting thing is that what Alberta does is quite different. Alberta does not have an IBI focused program per se, or an autism focused program. Autism presents a number of characteristics in terms of behaviours, et cetera, so they have a multidisciplinary team that assesses kids and will say, okay, we will fund X number of hours of speech therapy or Y number of hours of behaviour therapy or whatever. They do not track numbers of kids with autism.
As I mentioned before, they actually have a resource problem in terms of service providers. However, for the family that is mortgaged and re-mortgaged and re-mortgaged, the financial aspect is very severe and very significant for them.
My understanding is that there is not much in the way of federal provincial territorial coordination on autism, because at the federal level it comes under health and at the provincial level it comes under social services and never the twain shall meet.
Senator Munson: You talked about the whole idea of resources. I think Ontario has the same problem despite the new monies that have been poured into this. You talked about the problem of growing waiting lists and those young people between the ages of three and six who are waiting, when the key time of getting this intensive behavioural therapy or something along that line is not happening and you may say they will get treatment beyond the age of six now, but we are still losing the opportunity, from my perspective, in Ontario the opportunity to do something for these young people when they are diagnosed at the age of two or three.
Ms. Chambers: I will define "resources" more clearly. Alberta has money. They do not have sufficient service providers. We have been building service provider capacity. At this point in time we have no clear indication that we have a service provider shortage but we have been training service providers in an aggressive way. What we obviously need more of is money, even though we have more than doubled spending on this file.
Remember, our population is about 39 per cent of the population of Canada, so Alberta is actually dealing with a population smaller than Ontario's. They have the money. They need the service providers. I am very nervous about losing service providers from Ontario who might be interested in going to Alberta, where they would not only get jobs readily but they would be paid handsomely. I am nervous about that because I am training them and I want them to be in Ontario.
Senator Munson: Do you feel there is a crisis yourself at this time, because of the numbers that we keep hearing? The way I look at it is that if you live in New Brunswick you get some form of treatment; if you live in Ontario you get some form of treatment. It is just a hodgepodge scattered approach and sometimes it is very good and sometimes, as you say, there is not enough money. I guess there never is enough money, but there seem to be 10 different approaches to this in 10 different provinces and territories and from my perspective I fully believe in a national strategy of some sort where you can sit down with your federal counterpart here and other ministers and work something out so there are envelopes that money goes directly into an autism portfolio.
Ms. Chambers: In Ontario we have money that goes directly into the autism portfolio. We have $112 million that is only spent on autism. In addition to that we spend several more millions on services that are delivered by children's treatment centres which also benefit children with autism.
If we are talking about a national strategy, one thing we can discuss today is what that could look like because until we talk about what that could look like it would be presumptuous for me to say that all the provinces and territories should do the same thing or have the same programs.
The Ontario program, for example, is autism focused. It is IBI, which all the research suggests provides good results and the earlier the intervention the better. We are finding that most kids with autism spectrum disorder are diagnosed around a year and a half to two years old. In terms of crisis, I would not call it a crisis with the lack of a national strategy. It is a little bit of a leap in my mind to crisis because we do not have a national strategy.
I would say that certainly the numbers on our wait lists would be smaller if we were not including six year olds or older kids on the wait list, obviously, because 61 per cent of the kids who are receiving IBI right now are six years old. If we were discharging them on the basis of age, our wait list situation would look quite different. Our wait list also is comprised 45 per cent of kids who are six or older. Again, if those kids were not there our wait lists would be shorter.
My objective is not to simply have kids go away so we do not have to do the right thing for them. My objective is to do the right thing for the kids and to provide the supports that will benefit them.
Senator Cordy: You certainly do sound passionate about the issue of autism and in my other life I was an elementally schoolteacher so I know some of the stories of which you speak, of parents coming in extremely frustrated and parents who were quite delighted when their children started school because for them it was the first period since the child had been born that they actually had some quote unquote free time, Some respite from care giving of the child. In many cases there were two children because, as you said, it is diagnosed at the age of one and a half or two and in many cases another child had been born or the mother was pregnant with a second child too who had exhibited autistic tendencies.
To follow up on Senator Munson's questions, I am wondering about a national strategy and how we develop one. Do we do it through federal provincial territorial discussions? You have already said they have not been too successful. Do we look at top down looking at it from a federal perspective and have federal legislation? What would you suggest would be the most successful way of doing it?
Ms. Chambers: When I think of what could be done nationally, I think of things that could benefit all families wherever they happen to be in this country. I have not gone as far as to say we should all do the same things for these kids, but when I think of a national strategy I think of something that originates at the federal level and would benefit all kids and families.
Would this be a good time for me to touch on some of them?
Senator Cordy: It would be a good time.
Ms. Chambers: One thing parents tell me, and you will find this, is that many people do not know what autism is. Many people think the children just misbehave; they are out of control; they have tantrums. School bus drivers say they cannot take these kids because when they use a different route the kids get upset because anything destablizing or unfamiliar can cause a child with autism to have an episode, a severe reaction.
One mother told me that she tried to explain at length to some people at an event she was at that the reason why her child would not get up off the floor and kept doing things that other children were not doing was because he was autistic, and she felt as if she was making excuses. One thing that could be done across this country is to launch a public awareness campaign, to help people understand autism.
Some parents say, "My kids have special talents. They learn differently. External triggers cause reactions." In fact, some of these behaviours can be tempered by available treatments.
There is correlation also between ADHD attention deficit hyperactivity disorder – and autism and other conditions that tend to be seen as mental illnesses. There could be greater public awareness of what autism looks like and how people could work with kids with autism not work with intensively but socialize with or live with them. "Tolerate" sounds terrible; we want understanding of what is happening there. It would go a long way to helping parents cope, and helping kids to avoid the triggers to which they react so badly.
I mentioned that many parents with children with autism have had to leave or have not been able to enter the workforce. We have support at the taxation level for caregivers, for babysitting, for people who look after their senior relatives, for example. There is no such consideration for families with children with autism. Even with the 900 children who are receiving intensive behavioural intervention in Ontario, their families still have financial challenges for expenses that are associated with the condition that their child has or children have. Incidentally, I have met many families with more than one child with autism. One is challenging enough, but two or three?
Direct grants or tax deductions to help reduce the financial burden could happen at the national level. There could be tax deductions for services. One father was very emotional when he spoke with me the other day. His child was diagnosed three or four months ago. He said, "I cannot continue. I just do not have this kind of money. I have other kids and other responsibilities. Is there not even tax relief for my expenses?"
There is tax relief for medical expenses over a certain amount, medical expenses that are not covered by OHIP or other kinds of health insurance plans. It has just not hit that radar, if you like.
Senator Munson showed me an article from today's Ottawa Citizen newspaper, in which research suggests possible causes of autism. As I said, we created a research chair the last year at the University of Western Ontario, simply because there is so little research being done on autism.
I do not know if there is an increasing number of kids with autism. I do know that diagnoses that would not have occurred ten or 15 years ago are now occurring. Parents have told me there was a time when physicians would not diagnose their children because it was like a death sentence; they just could not tell them. They just could not bring themselves to tell parents that this was happening to their child.
We also have a severe shortage, in the thousands, of child psychologists. I have heard very little about that issue. In fact, I only heard about it when I came into this ministry, in the context of my youth justice portfolio. It is more often than not psychologists who are involved as case managers, doing the diagnoses and the ongoing assessments of these children because, as I have indicated, there are a variety of services that can benefit these children and their families.
Those are some of the ideas I have. Money is always something that provinces and territories would love to have more of from the federal government. I assume that is a given on everyone's wish list. When we talk about a national strategy, I equate that with national recognition, appreciation and support for the challenges that families with autistic children face.
It is important to know that autism, so far, is not curable. What happens with these kinds of behavioural interventions where medication is brought to bear is a tempering of the behaviours, a tempering of the symptoms, but autism does not go away. As some of you have recognized from the notes I have read, as these children get older and as their parents get older, we are looking at the fact that the parents will not be able to take care of their children any more. There are different stages of residential opportunities or options for people with a range of disabilities. We have assisted living, supportive housing, semi independent living, and finally, fully dependent living.
In Ontario we have adults who became adults in children's facilities. Residential supports are not sufficient, and these come at great cost. The more that we can do with our children to enable them to get to the point where their potential actually includes some ability to take care of themselves, the better it will be for the country as a whole and certainly a huge relief to their parents.
The Chairman: I will piggyback on this and ask you a supplementary with respect to this development of a national autistic strategy. In terms of delivery of health care services and social services, those are provincial jurisdictions, but we have developed strategies here before.
We have a national diabetes strategy; there are numerous other ones – for example, cancer – that have been developed. However, we have never gone to the extent, for example, of one proposed private member's bill in the House of Commons that suggests that we say that IBI should be indicated as a health requirement in terms of the Canada Health Act. That kind of thing has never happened before.
How far should the federal government get into this? Tax deductions and those things you have mentioned, yes, certainly, and public awareness campaigns could be federally led or it could be by organizations such as the Autistic Society.
Since we need to work this out as a Senate committee, in terms of the federal government involvement in all of this and particularly the funding aspect of it, what would you see as the appropriate federal role in that development?
Ms. Chambers: Just about all of what I have mentioned in terms of role involves fiscal contributions, because that is very significant. As it is right now, all of money that we are spending is going to services for the kids or to training for workers in the field.
In terms of who should actually deliver, it is not necessarily the same as who should fund. For Autism Society Ontario, we have funded the development and maintenance of a new website called Abacus List. We have two options – a direct service option where we do not give parents any money; we provide them with services, which they receive through our service providers, and we pay the service providers. We also have a direct funding option, where we give the parents the money to buy the services from service providers that they choose.
One thing that parents were telling us was that they could not determine whether or not the service provider was appropriately qualified to help their kids. We created, with Autism Society Ontario, a list of questions that they could ask to determine the qualifications of the prospective service provider.
We also are funding a registry, and this has been very popular. This was implemented in July of this year and they have had thousands of hits against this website. This registry includes service provider names, locations where they provide their services, the kinds of services they provide and their qualifications, so that parents have something to go on when seeking service providers.
The other thing that we are working on, and parents have said would be very useful to them, is certification of the service providers. In Ontario, we are working with an organization called the Association of Behavior Analysis. They have taken this idea to their membership and we expect to hear from them in January, where we could have at least a standard certification. That is an example of something that could be standard across the country.
We could also go a step further, which would be to establish a regulatory body for behaviour analysts or therapists.
From a standards perspective, these kids have unique characteristics, so to say that every child needs the same thing would not apply to kids with ASD, autism spectrum disorder. However, in terms of helping to ensure that the service providers meet certain standards, that is fair.
I have worked with regulatory colleges before and that tends to reside at the provincial and territorial level; I am not sure that that has to be nationally directed. On the subject of health coverage, the Canada Health Act speaks to medically necessary, right? The jury is out on whether or not autism would fall into that medical category, except for kids who are actually being treated with the kinds of psychotropic medications, for example, that kids with attention deficit are receiving or other mental health type conditions. There is some of that but for the most part, this is therapy.
You have a similar challenge with psychologists and psychiatrists being covered differently. The whole concept of medically necessary is not particularly welcoming to situations or conditions that do not have a medical base in the treatment.
The Chairman: Members of the committee, normally we would go to six o'clock. We do not have to be out of here at six, so we can go later than that, depending whether the minister can do that.
Ms. Chambers: That is fine with me.
The Chairman: I wanted to draw to members' attention the fact that there are other committees going on, including one I am supposed to attend down the hall after six o'clock, so we do have that kind of problem.
With that in mind, if we can keep the questions short and tight, we can get done within a reasonable period of time.
Senator Cordy: Thank you for talking about the national strategy. Certainly, the items that you gave us are things that could be done at a national level and under federal leadership. That was very helpful for me.
I was going to ask you about research, but in your comments you said research is sadly lacking in this field, so I will move on to my next question. What about advocates for parents? I, too, met with a family where the father had a nervous breakdown because it was difficult dealing with two autistic children. There was no respite care for the parents because the grandparents were unable to handle the two children, so the parents were struggling financially; they had many stresses. In addition to that, and you made mention of it earlier, there are so many silos within our governmental systems. You are dealing with the school system, the health system and community services, and sometimes parents who are absolutely stressed out find it difficult to wend their way through this governmental maze. Have you looked at any type of advocacy for parents who are going through the stresses of working with their autistic children?
Ms. Chambers: In the spring of this year, we announced an additional $13.1 million in funding for a number of things, which included parent support networks through Autism Society Ontario, consultation type opportunities with service providers. Our services also include parent training.
Incidentally, the new college has a course that we started in September of last year. I know it has also been taken by parents because parents find that when they understand how to cope with their kids, it makes a huge difference. All parents should have some kind of training in that. I knew that is what was going through your head, senator.
We fund summer camps. I visited a summer camp in the Ottawa area this year that was working with kids with autism from 3 to 19 years of age. It was fantastic. I thought about the fact that these parents did not have to worry about those kids this summer. I also thought about the fact that this was a break for those kids. I asked the people who run the program what sort of reaction they were getting from parents, and they said the parents love two things. The kids come home exhausted, ready to go to bed, and, as they are going to bed, they say, "We just cannot wait until tomorrow morning to go back to camp." It works.
We are funding a variety of programs and services, but there is no question that there are parents who are finding it very difficult. There have been cases of parents with complex special needs who have actually gone to the children's aid societies and said, "We cannot take care of our kids any more."
Senator Nancy Ruth: I have three questions, minister. You frequently used the phrase "six years or older" but not given a context for what that means. Is that a behavioural change or an age change?
I heard from Mary Eberts last week that, in the Toronto school board, school assistants can be promoted. This is a union issue. They could have been on the janitorial staff or something else, and if they there is a job opening, they can go to school assistant. In some cases, they may go into a class with special needs students. The union contract gives the person the option not to take the special training that is available to them, and therefore you can get unskilled people dealing with kids that need skills. What do you know about it, and how do you fix it?
You were talking about standardized training nationally, not necessarily provincially, and then you went on to all these associations being provincially regulated. Is there a place to stop this and recommend a national training standard that could be bought into by all provinces?
Ms. Chambers: Thank you. On the six or older issue, the significance of that is that in Ontario, until last year, kids age six or older were discharged from IBI services or did not receive IBI services. That was for two reasons. It was defined as a preschool program, so six was Grade 1, and the other is that IBI is well documented as being most effective in the earlier years, as is the case with so many things that kids encounter, or even adults. The earlier you get to it the better. Certainly intensive behavioural analysis was seen to be more effective when the kids are younger.
Having said that, we have also seen it as having positive effects with older kids. With the cut off at age 6, parents had advocated very strongly for the removal of that cut off, and that is what went to the courts. That is what has created a lot of noise in Ontario. Dalton McGuinty made a commitment before being elected that he would provide services beyond age 6 for kids. It has gotten a lot of confusing visibility because of the court case, et cetera. That is why we talk about six or older.
Senator Nancy Ruth: How much is older? How long does this go on?
Ms. Chambers: Through the school years.
Senator Nancy Ruth: To 18, or older if they did not get through high school, maybe?
Ms. Chambers: In the school system, yes. The way IBI is delivered is really quite intensive. A therapist works with that child, for the most part, one on one. They may have some small group sessions as well as the child is benefiting and improving, but it is really very intensive.
The version of IBI that is provided in the school setting I would like to compare to reading recovery. Reading recovery involves a teacher taking a child out of a classroom and providing a little extra help, more attention, more tips on how to read and comprehend what is being read. That child returns to the classroom and is able to put that learning to work with the other kids in class. ABA would be the same type of situation, because applied behavioural analysis is placing emphasis on appropriate behaviours and also reinforcing learning styles and helping kids.
I heard a physician interviewed, an American woman. She is autistic. She said that until she got to university, she thought everyone thought in pictures. That is how she learns. People thought she was strange because she would visualize. She would picture things and draw pictures. Again, it is different learning styles.
As to the unions and the schools and what is mandatory or not, you have hit a sensitive point there. There are a number of issues. One is that some parents have said they should be able to take their children's therapist into the classrooms with them, to school with them. That has not been received well by unions. However, we have found a significant range of response from school to school, less so at the school board level. It seems to be at the level of the principal as to how receptive that school will be and how supportive that school will be to the needs of an autistic child. That is definitely an area of challenge.
I mentioned our school support program where we have these consultants who are training educators. Nobody can be forced to take that training. It is not mandatory. We have heard of cases where educators have not taken advantage of the opportunity.
On the matter of regulation of the service providers, I had a situation in working with internationally trained professionals in my previous portfolio with the dental surgeons. Each province has their own college for dental surgeons, and I was working with each regulatory body to find out what their practice was for accrediting people with international credentials to practise in Ontario. The dental surgeons came and said, "We have typically put internationally trained dental surgeons through two years of university, at $40,000 per year, automatically, but we have discovered they did not always need all of that retraining or training." A light bulb went on, and they said, "Why do we not assess them first before we insist that they go through these two years?" I thought how wonderful, because 80 per cent of them were not needing the training. Think about the two years they were not able to work because they were in school full time, not being able to support their family adequately and spending all of this money to pay for their training. I said that sounded wonderful to me and was very progressive. They said, "The only problem is that we cannot make this decision on our own because we are one of several colleges that make up the Royal College of Surgeons, the national body. As it turned out, everything worked out well. All the provinces adopted this new approach, which had to be approved at the national level. Not all the regulatory bodies work that way. Certainly, to set up a new one we could start from scratch. We could do it at the national level. It is certainly something that could be pursued.
Given the cost of this kind of therapy, you really want to ensure that children are indeed benefiting because they are in fact getting the right kind of support. It makes sense to have some standards in that regard.
Senator Fairbairn: Many of the things that you were responding to in response to Senator Nancy Ruth were things that were going through my mind. However, when I walked through the door you were in full tilt going on about the province of Alberta, which is where I am from. You noted it had money, which it does.
Ms. Chambers: I am jealous.
Senator Fairbairn: One of the good things about this committee is that it does look into these things. Over the last year, I have been reading through newspapers in my province. I have noted again and again that in reporting about the kinds of events and meetings that are going on they often involve some kind of medical difficulty within a community. You have been talking about the lack of child psychologists and service providers. To your knowledge, why would that not be taken on by the province of Alberta? It is a province which takes pride, and so it should, in places like Edmonton and Calgary in terms of the innovative work that their hospital and medical communities do. I gather from you that autism is pretty low on the list.
Ms. Chambers: No, that is not right. What I have said about Alberta and how Alberta supports families and children with autism is that there is a multidisciplinary team that assesses the condition and needs of the child. It determines what they will do to fund that child in terms of services.
It is not an autism program. It is a program for kids with special needs. They do not track the number of autistic kids. They do not track the time it takes to assess them. They do not track anything like that specific to autism. I am not sure what they do in terms of the total number of kids who receive services; but they do not have numbers specific to autism.
However, families have no difficulty getting money. I talked about the two options in Ontario. The direct service option involves the province paying service providers to deliver the services. The direct funding option involves the province handing parents money for the services that they will purchase.
From what I have read, Alberta's challenge is insufficient service providers. Families are receiving money and then having difficulty spending that money.
When I spoke at the federal provincial territorial ministers meeting, everyone was crying out for help. I wanted to know what the others were doing and how they were doing it. Alberta's minister actually said, "We really do not have a problem." Many families would say the same thing. However, some families will also say they are unable to find the service providers. They do receive the money.
Senator Fairbairn: But there is no one to help.
Ms. Chambers: I would not say “no one”. They do not have as many service providers as there is demand.
Senator Fairbairn: The more I am listening this afternoon the more I think there ought to be some kind of national attention on this issue.
Ms. Chambers: My concern is that as I am building capacity I do not want to lose them. I define capacity as service providers, trained child care workers, education assistants, educators and behaviour analysts who can actually provide therapy. The risk I have is that I need more money to pay for these services. Many of my families are paying for the services themselves, but it is really hard on them.
Senator Champagne: Anyone who hears you talking about autism would be really concerned. I knew very little about it until we talked about it in the last two or three meetings that we have had. I knew of it because I had seen things on television. I think you could sell anyone on the necessity of doing something.
You were talking about doing something that is medically necessary. Before you said it, I had just written down: Why is it not considered a sickness? Is it because there is no cure? Is it because they do not grow out of the problem? If they cannot get cured, is it not a sickness?
If there is an accident, if there is a problem with bones when a child is born, there will be operations and rehabilitation for physical problems. Working with a psychologist is really rehabilitation for the mind.
How can we convince our governments at the federal or provincial level that whatever is needed for those children should somehow come under the Canada Health Act? If you need a nurse at home because you are sick, it can be paid for, either by an insurance company or the government. For the parent who needs the help, who needs a psychologist for that child, there is no money to be had. I cannot understand this. We have to reach someone at our level and at the provincial level to get together so that these parents can get help. That to me is very important. I am very happy to see that in my province of Quebec there is a little bit of help for the families. It is nothing; it is $1,500 a year. At least it may allow someone to take a week or two of holiday or something like that, but it is not enough. We need to look after the parents and the children. I am talking where you should be talking.
I cannot help telling you how much you have convinced me of the need to do something. I am delighted, Senator Munson, that you raised this subject for us to study. Hopefully, with what you are telling us, we will be able to convince people that we do need a strategy, that we cannot leave those kids alone, and that we cannot leave those parents without the help they need and they deserve.
Ms. Chambers: Thank you, senator. I have made a point of listening to parents and hearing from as many parents as possible. I have also heard from parents. There is also a movement that does not believe in IBI. That is fine, too. There are a range of services that will benefit these children. As I said, there are many kids that are receiving support through children's treatment centres that is not IBI but that is what their parents have determined to be best for them.
Senator Champagne: More research is needed, I would imagine.
Ms. Chambers: Very much so.
Senator Champagne: We need to put money into research as well.
Ms. Chambers: I think so.
Senator Champagne: One thing I have seen on television recently is three different programs from three different countries: One from the United States, one from France and one from Canada. They were suggesting totally different types of treatment. You say where do you go? If I had a grandchild that would be diagnosed as autistic, where do we go and what do we do?
Ms. Chambers: The easy answer to that is the families I have met will do anything that they can to help their children deal with the presenting characteristics.
I want to go back to the Canada Health Act. One thing I have experienced, having only been in government for a little over three years, is how much of a snowball effect some change in legislation can have. Remember when we were talking about the psychologists versus psychiatrists? It is my understanding that psychologists are not covered by the Canada health Act. That is correct, right? That is because they are not medical practitioners.
For the most part, the people who work with kids with ASD are not medical practitioners. You know where I am going with this. If you open the Canada Health Act to define ASD as something that is equivalent to "medically necessary care," then you must look at what other kinds of practitioners should be covered under the Canada Health Act. If that autistic child receives Ritalin, which quite often kids with ADHD are prescribed, then that is covered because it is medication. However, the therapy, the respite care and the summer camps are not deemed medically necessary. The question is: How do you still provide supports? I tried the Canada Health Act thing. I bounced that off my deputy. As every good deputy will do, she helped me to understand the implications of my big crimes. Is that a fair assessment?
I then say, "How can we still achieve at least a significant amount of what I think we need to be able to achieve for these kids?"
Ms. Chambers: Even in the autism world, families who do not believe in IBI are seen as a problem for families who believe in IBI.
There was a conference recently called the Joy of Autism. They were saying that these kids are not these monsters that they are made out to be by some people. They just learn differently. They have different talents. They are artistic; some of them are very high IQs, et cetera.
Senator Champagne: They see Rain Man all over.
Ms. Chambers: Yes. That works for those families and the families who want IBI. They have heard how other kids have benefited from IBI say, "If you go that route, I will not get the support I need. Are you with me?" Our approach has been to look at a range of supports and services so that parents can choose what would work best for their kids.
The Chairman: I wish to close this off with several questions about the financial challenges. There are emotional and financial challenges that families face with autistic children. You said several things that I wanted to get clarification on.
First, you talked about waiting lists. How long do people wait on these lists? Second, you mentioned that with those who are getting IBI therapy, they could be spending $35,000 or $50,000 a year. Is that $35,000 or $50,000 that the province is covering or is that their expenses? If it is, how much is the province covering at this point?
Ms. Chambers: I will answer your second question first. The average cost of the IBI program, that is the 25 to 40 hours per week of intensive therapy, is between $35,000 and $50,000 per year. For those kids who are not on the waiting list – that is, for those who are actually receiving the intensive behavioural intervention, as far as we are concerned, our government pays for that.
If they need respite or other kinds of services, that is an additional expense. Some of the kids who are on the wait lists are receiving therapy that the parents are paying for themselves. Those parents are desperately trying to get the support to their kids. They do not want to simply watch them go day after day without supports so they pay for those supports themselves. It is a huge hardship for those parents.
The Chairman: How long?
Ms. Chambers: The wait times right now are approximately two years. We are dealing here with a need for additional financial resources so we can provide more kids with funded services. As I have indicated, if we simply wanted to say, "We have X amount of money and that can only serve Y amount of kids, so those who are above whatever age, you should really be in school, you should not be in this program," then our wait lists could be shorter. However, the question is: Would we be doing the best thing for the kids?
The Premier of Ontario says that we would like to do the right thing for the kids.
The Chairman: Good. Well, I know we could keep going longer. I am in your hands, but some of us do have another committee to attend. With that, let me thank Minister Chambers for coming here today. I think she has impressed us all with her first hand knowledge of this subject matter. All the information that she has given us is most valuable.
You are the first provincial minister to come here. We hope some others will do the same.
Ms. Chambers: Maybe you received the reaction I got when I raised it at FPT. There was not a lot of enthusiasm.
The Chairman: Thank you so much for being here. We might want to contact you in future about this. We are just starting into this. We will have an expert's round table and we will have various organizations coming in. By the end of the year, we hope to have some recommendations that might lead to a national strategy.
Ms. Chambers: I want to thank you for doing this. I want to thank you for getting the ball rolling on this, Senator Munson. I want to thank you for inviting me here. These parents rally; they protest. They say things that are not necessarily positive about government, but have I never seen them as enemies because if I had their challenges I would be doing the same thing.
The Chairman: Yes.
Ms. Chambers: When they rally outside my office, I make sure I am there to speak with them. I get beaten up, but I listen to them.
The Chairman: I think we have a rally on the Hill next week.
Ms. Chambers: I think they are interested in national attention to this challenge. I know that they know that I am working on their behalf because I do listen to them and I think they have very valid challenges. Thank you for doing this. Thank you for having me.
The Chairman: Our meeting is adjourned till 10:45 tomorrow morning.
The committee adjourned.

[Andrew Kavchak]

THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, November 2, 2006
The Standing Senate Committee on Social Affairs, Science and Technology met this day at 10:45 a.m. to inquire on the issue of funding for the treatment of autism.
Senator Art Eggleton (Chairman) in the chair.
The Chairman: I call to order this meeting of the Standing Senate Committee on Social Affairs, Science and Technology. For those who watch this committee on television, I am not Michael Kirby. Senator Kirby has decided to take early retirement, and I have now become the chair of the committee. I am Senator Art Eggleton, from Toronto, Ontario.
I am pleased, though, that I still have the same vice chair as Senator Kirby had, Senator Keon, who will be here shortly. He, together with Senator Kirby and the members of this committee, has done some outstanding work in the past, most recently on the mental health report, Out of the Shadows at Last, a report which I, as chair, want to continue to advance and see it work its way through the system of being adopted by the government.
Today, I also want to note the presence of Senator Jim Munson. Senator Munson put before the Senate a reference motion with respect to the matter that we will deal with today, and that is an inquiry into the issue of funding for the treatment of autism.
We will be dealing with autism over a number of meetings over the next few weeks, with the hope that we can complete our hearings in the fall. I will be putting a motion before the Senate today, giving us a little bit more time to get the final report out.
We had been asked to deal with the final report by the end of November. That is a little tight, to say the least, but the motion will be to give us until the end of May, which will give us a lot of latitude after the hearings to have deliberations and come to conclusions and recommendations.
Of course, we will be dealing with some other issues, but that is still being worked on in terms of our work program, and there will be more about that later.
Let me now begin on this morning's program, which has three witnesses, who will appear and start the information flow on autism. As this is the first session on the subject and some are more knowledgeable than others about it, a sort of an Autism 101 or a primer might be helpful in the course of the testimony.
First, from Health Canada, we have Gigi Mandy; from the Canadian Institutes of Health Research, we have Dr. Rémi Quirion; and from the Ministry of Social Development Canada, Caroline Weber.
Caroline Weber, Director General, Office for Disability Issues, Social Development Canada: It is the new and improved Human Resources and Social Development Canada.
The Chairman: The new and improved. Thank you very much. We will start with Gigi Mandy from Health Canada.
Gigi Mandy, Acting Director General of Intergovernmental Affairs Directorate, Health Canada: Good morning. I am pleased to be with you today to discuss the federal role with respect to autism, particularly in the coverage of treatments for Autism Spectrum Disorders, or ASD.
First, I would like to note that the federal government is aware of the challenges faced by those with autism and their families and of the difficulties regarding support and provision of accessible programs and services. ASD is certainly a very important issue.
Although provincial and territorial governments have the primary responsibility for matters related to the administration and delivery of health care services, the federal government is also involved in ASD, for example, by funding research, providing access to on line information, through tax benefits and measures, amongst other things.
On the research side, the Canadian Institutes of Health Research is the government's lead agency responsible for funding university based health research. My colleague from the Institute of Neurosciences, Mental Health and Addiction is here this morning to provide information on how that institute is helping to support Autism Spectrum Disorder research.
I should also like to mention that the Public Health Agency of Canada is also involved in ASD research through the funding it provides to the Centres of Excellence for Children's Well Being, particularly the centres for early childhood development and special needs. The public health agency also funds the Canadian Health Network, which is a national, bilingual, Internet based health information service that works in collaboration with expert associations and organizations to provide consumer focused, on line resources on various issues such as autism. If you have any questions on these activities, I would be pleased to ensure that you get more information on them.
My colleague Caroline Weber from Human Resources and Social Development Canada will address in her presentation some of the tax measures for people with disabilities that would also be available to families of children with autism.
As you know, the federal government provides funding to the provinces and territories in support of their health care systems through the Canada Health Transfer. This transfer is, of course, subject to the requirements of the Canadian Health Act. The act establishes the criterion and conditions related to insured health services and extended health care services that the provinces and territories must meet to receive their full share of the transfer under the Canada Health Transfer.
The aim of the act is to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis without direct charges at the point of service.
Senator Nancy Ruth: Do we have the document you are reading from? If so, what page are you on? I see a number of us trying to find it. I had the beginning of it on the document that looks like this.
Ms. Mandy: Yes. I have just decided to skip the portions on the tax measures because Ms. Weber will address those.
Senator Nancy Ruth: You are on which page now?
Ms. Mandy: That is a very good question, because I am working from a different version. I can find it for you. I am sorry, but that version does not match mine.
The Chairman: We sometimes get documents, but witnesses are not obliged to follow the documentation. It does not always work that way. Carry on, please
Ms. Mandy: I am sorry about that.
As I was saying, the aim of the Canada Health Act is to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis and without direct point of service charges.
Under the comprehensiveness criterion of the act, provincial and territorial health plans must ensure coverage of all insured health services, which are defined under the act as medically necessary, physician services, hospital services and surgical dental services requiring a hospital for their proper performance. The act does not list specific conditions for which treatment must be covered by provinces and territories, nor does it outline in any great detail what services are considered to be medically necessary. Rather, the act defines in very general terms a minimum range of service or a basket of service that must be insured on a national basis in Canada. Again, services to be insured must meet several criteria. They have to be medically necessary, provided by a physician or in a hospital, and, in addition, in the case of surgical dental services, must require the hospital for their proper performance.
As you know, services such as intensive behavioural therapy services for Autism Spectrum Disorders are not covered by the Canada Health Act. However, there would be nothing under the scope of the Canada Health Act that would prevent provinces and territories from providing or funding these services if they wished to do so.
At the provincial and territorial level, children and/or adults with Autism Spectrum Disorders have a range to a wide variety of services and benefits. With respect to the intensive behavioural therapies, such as ABA or applied behavioural analysis, or IBI, intensive behavioural intervention, provinces and territories may provide funding through different approaches. Some have publicly funded programs. Others offer direct support to parents to help them defray the costs of purchasing these services. Others provide support to non profit organizations, which then, in turn, provide these services to parents and individuals with ASD. Again, because these services are not subject to the provisions of the Canada Health Act, provinces and territories can provide these services on their own terms and conditions.
Beyond these services and depending on where they live, children with ASD and their families may also have access to a variety of other supports. They can include supports through the educational system, such as supports to school boards for special programs for children with disabilities, which would also capture children with ASD. Many provinces have autism consultants to work with the schools and teachers to create a positive educational environment. Many high schools have special ASD units that address the special needs of these students while helping to integrate them into the general school population. There is also access to occupational and speech therapies. They provide individual learning plans for children with special needs. They provide guidance and counselling as well.
Under the social services rubric, services can include respite care for the parents and guardians of these children, recreational programs, summer day camps, and crisis intervention supports to help families cope with the stress and crises that may arise in dealing with children with these problems.
Provinces and territories may also provide public assistance to adults with autism in a variety of areas, including post secondary educational supports, vocational training, job placement services, workplace supports, social and life skills training, affordable housing registries, home support services, et cetera.
I was asked to address the recent court cases related to autism. Recently, parents have resorted to the courts to try to obtain provincial funding for treatment for treatment for Autism Spectrum Disorders. Families of these children successfully sued for public funding of behavioral therapy services in Alberta in 1996. The Alberta Court of Queen's Bench ordered the province to fund 90 percent of the costs of a behavioural therapy programs in this decision. In a Supreme Court of Canada case in 2004, known as the Auton decision, British Columbia was successful in appealing the lower court's orders that they had to fund IBI services.
B.C. had appealed rulings that had essentially said that their failure to fund intensive behavioural therapy for autistic children under the their provincial health care plan, had violated section 15, equality rights, of the Charter and that such a violation could not be considered a reasonable limit under section 1.
The B.C. Court of Appeal decision raised significant legal and policy issues for governments, including the question of government's ability to make decisions about what services to fund publicly within their health and social programs, as well as the question of judicial encroachment on an area that had been traditionally within the purview of legislatures. Because of these issues, seven provincial Attorneys General, as well as the federal government, intervened before the Supreme Court in support of British Columbia.
On November 19, 2004, the Supreme Court allowed B.C.'s appeal and overturned the lower court decisions. In the unanimous decision, Chief Justice McLachlin held that choosing not to fund these services, which it noted were neither hospital nor physician services, was not discriminatory. She noted that neither the Canada Health Act nor the B.C. provincial health legislation promised to fund all medically required treatments and that the province's health insurance plan was "by its very terms, a partial health plan."
However, it was important in another aspect in that it was during the Auton legislation that the British Columbia government implemented their package of financial support of up to $20,000 per year per autistic child up to age 6 and then $6,000 per year for children age 6 to 18.
Earlier this year, the Ontario Court of Appeal decision in the Wynberg case came down. At issue in this case was whether, having committed funding to these services through a special program for young children under the Ministry of Children and Youth Services, the Ontario government was violating the rights of children by imposing a cut off age of 6. The court found that the age cut off did not in fact violate the rights of children with Autism Spectrum Disorder and that it was a product of a difficulty policy choice.
Again, the court upheld the right of the provincial legislature to make policy and funding decisions.
Again, since the court decision, Ontario has implemented a wide range of new supports for children with autism and their families that include investing an additional $8.6 million to provide IBI to more than 120 additional children with autism, regardless of their age; investing money in more training for teachers' assistants to work with students in the system; additional support services for children and youth with autism and their families, including parent support networks, training, resource materials and access to consultation with Autism Spectrum Disorder consultants; and also additional funds to help youth with Autism Spectrum Disorder make a successful transition to their teenage years through additional behavioural supports, crisis intervention and life skills counselling.
Ontario has reduced significantly the number of children waiting for assessment for this disorder.
I would note that since the Auton decision there have been numerous calls for the federal government to amend the Canada Health Act to have services to treat persons suffering from Autism Spectrum Disorders deemed medically necessary under provincial and territorial health insurance plans.
Referring to specific services in the Canada Health Act would be incompatible with its overall structure and intent. The Canada Health Act references insured services and medical necessity, but as I mentioned before, it does not define specific services for which treatments must be provided.
All provinces and territories have mechanisms in place to examine the insured status of health services. They consult with members of the medical profession to determine what services are medically necessary and should be covered under their plans. These consultations have proven in the past to be an effective way of ensuring that Canadians do receive appropriate care.
I hope this broad overview of the federal role in the area of Autism Spectrum Disorders and the provincial coverage has been helpful and I would like to thank the committee for their invitation to appear here today.
The Chairman: Thank you very much, Ms. Mandy. I should also note that here with Ms. Mandy is Serge Lafond, Acting Director of the Canada Health Act Division and will be available to answer questions as well on behalf of Health Canada.
I would now like to turn to Dr. Rémi Quirion, from the Canadian Institutes of Health Research.
Rémi Quirion, Scientific Director, Institute of Neurosciences, Mental Health and Addiction, Canadian Institutes of Health Research:
I know many of you from your work with Senator Kirby and Senator Keon on mental health file. I was very impressed by the committee and I really hope that some of the recommendations in the report will be put in place sooner rather than later.
That being said, as you know, the Institute of Neurosciences, Mental Health and Addiction funds support for autism related research in Canada. We do not do that in a vacuum. It is done in partnership with other institutes: The Institute of Child and Youth Health, the Institute of Genetics, the Institute of Health Services Research; the Institute of Population Health. We do it also in partnership with other federal organizations: Health Canada, the public health agency of Canada. We also do it in partnership with provinces, with funding bodies in provinces, like in Quebec with the Fonds de la recherche en santé du Québec and also with voluntary organizations in Canada and in the United States.
I think one of the key challenges in the field of autism and Autism Spectrum Disorder is that there are a lot of unknowns. We know very little about the disease process and what we know is not well understood. I would argue that research is critical to uncover the mystery of Autism Spectrum Disorder and to develop truly evidence based standards for diagnosis and treatment.
Today I will give a few examples of research funded by CIHR and partners and share some thoughts and ideas as to the role of the federal government in that regard.
What about CIHR funding of autism related research in Canada? In 2005 and 2006, CIHR was funding approximately $3.5 million in research focusing on autism in Canada. Since 2000 and the creation of CIHR, we have added to the research funding about $15 million. It is funding that goes to various university and teaching hospitals across the country.
I would just like to give a few examples. One is a group at McGill University, in partnership with University of Montreal, the group of Eric Fombonne , the chair of child psychiatry. He and his team received a grant from CIHR to train the next generation of scientists. As I said, we have little evidence on the cause of the disease, but we also lack the proper expertise in the field.
These types of training programs are not the usual ones. When I did my Ph.D. in neuroscience at the University of Sherbrooke, I focused on one topic only.
Now, in the training program that Dr. Fombonne and his colleagues have, there will be students that work on the genetics of autism, others that work on IBI, and others that work on the social aspect. One unique feature is that they talk to each other. Each student has to spend two weeks every year with a family with an autistic kid. It brings home the message. They not only work in autism, they see real cases. I think this is extremely powerful and hopefully the next generation of experts in the field will have a more global understanding of disease and disease processes and treatments than the one we have now.
This initiative is to the tune of about $2.9 million and it is in partnership with the Fonds de la recherche en santé du Québec and the U.S. based voluntary organization Autism Now.
Dr. Fombonne is starting a research program on autism in Aboriginal people.
Why will that be? We have no idea. We need to do more research on that and Dr. Fombonne is one of the world leaders in the field of autism research.
Another team at Queen's University, Dr. Jeanette Holden, has a team grant from CIHR; one is a training grant, a bit like Dr. Fombonne has, and also a military disciplinary team that includes families, patients and scientists from across the country, from B.C. to the Maritimes, and also from the U.S.A. They are trying to understand the cause, genetic background and the impact of society on the incidence of the disorder.
There is another team at Queen's University, Dr. Hélène Ouellette Kuntz, that created a national epidemiological database for the study of autism in Canada. It is called NEDSAC and is monitoring the occurrence of Autism Spectrum Disorder among children under the age of 15 that live in various regions and cities across the country. Included are cities and regions in B.C., Alberta, Manitoba, southwestern Ontario, Prince Edward Island, Newfoundland and Labrador.
They have a diagnostic clinic; and government departments and community agencies are participating in NEDSAC. Its goal is to determine if Autism Spectrum Disorder is really increasing. Is the incidence increasing over the past decade? Some data suggests yes, but we need more research to know whether it is indeed the case.
There is another program co led by Dr. Steve Schecter , at the Sick Children's Hospital, University of Toronto and Dr. Peter Szatmari at McMaster University. These are two of the world leaders in the field of autism and Autism Spectrum Disorder. They work on that and they also work on evaluating the effectiveness of IBI in the treatment of various forms of Autism Spectrum Disorder – again, one of the world's leading teams in the field.
There is another group based in Edmonton at the University of Alberta, in partnership with Brian Cole from the University of Lethbridge. They study interaction between genetic markers and environment – environment defined in the sense of social environment that could lead eventually to the development of Autism Spectrum Disorder.
Dr. Susan Bryson at Dalhousie University in Halifax holds the John and Jack Craig chair in autism research at Dalhousie. She is focusing on treatment, developing novel approaches to treatment of autism and Autism Spectrum Disorder; and this is again one of the world leaders in this field. Then have you the team of Laurent Motrin at the University of Montreal and Laurent is especially focusing on highly functional autistic adults, especially Asperger type. He involves these kinds of patients in his research project and one of them is doing a Ph.D. with Laurent at the moment.
There is a lot of excellence in research in the country and some of the world leaders. These are only a few examples of projects that are helping us to understand the cause of the disease and hopefully come up with better treatment.
It is a start. We need to do more. It is part of the challenge for families, caregivers, health and social service professionals and government that much is unknown regarding Autism Spectrum Disorder. Too often still, there is a school of thought that is not truly based on evidence. Then there is a lot of pressure at various levels to focus on one aspect of treatment that have not been fully demonstrated to be truly effective. So research is key and we must be evidence based so that we can put in place proper policy.
Federal role in autism research: Of course, research is a key federal role and the Canadian Institutes of Health Research is keen on being involved in supporting or adding more support in the field of autism research for Canada.
We cannot do it alone. It needs to be done in partnership with provinces and with voluntary organizations. One of the ways we do business is to get together to organize workshops with voluntary organizations to try to highlight the key concerns of families, caregivers, health care professionals and scientists in a given field. We did that with the Autism Society of Canada five years ago, and we came up with various priorities. Maybe it is time to do it again. If it is the wish of the community we are certainly willing to do so.
In closing, thank you again for all the work you do, and hopefully that will, at the end of the day, help people suffering from autism in Canada.
The Chairman: Thank you very much, Dr. Quirion. Finally, we have Carolyn Weber from Human Resources and Social Development Canada.
Caroline Weber, Director General, Office for Disability Issues, Social Development Canada: Thank you for this opportunity to present to this committee. It always is an honour.
(French follows, Ms. Weber continuing – J'aimerais vous faire part)

02-11-06/DQ (après anglais)(Mme Weber)
J'aimerais vous faire part de quelques statistiques à propos des personnes handicapées et des remarques au sujet du rôle du gouvernement fédéral.
(Mrs. Weber : I am going to flip you through…) (après anglais)

(Following French, Ms. Weber continuing after – gouvernement fédéral)
I will flip you through some statistics fairly quickly. We run, with the census, something called the Participation and Activities Limitation Survey, so we have data from 2001 on people with disabilities. I always find this information helpful and useful.
In 2001, 12.4 per cent of the population in Canada identified themselves as living with a limitation that could be called a disability; it is about 3.6 million Canadians at that time. They were comprised of 1.9 million working age adults and about 181,000 children.
When we look at what kinds of disabilities people report, we see mostly mobility and pain, followed by things like hearing, visual, psychological, learning, memory, speech, developmental. If I break these down in some statistics for you, for Canadians 15 years and older, 72 per cent of the people with disabilities reported that they had mobility related disabilities. Hearing accounted for 30 per cent, visual impairment for 17 per cent, and developmental disabilities, which would include autism and Autism Spectrum Disorder, which accounts for about 4 per cent of adult Canadians with disabilities.
I also want to note, though, that the reported rate for developmental disabilities among young people is much greater. We see 30 per cent of school age children with disabilities, in the age range of five to 14, self identified by their families as having a developmental disability.
I have not brought a definition of autism for you. It is clear that autism is a disabling condition that interferes with communication and social interaction, but the degree of disability may change over time and varies, depending on many factors such as the pervasiveness of the condition, the stage of development, and the effectiveness of treatment, interventions or perhaps the environment.
Regarding the role of the Government of Canada in supporting people with disabilities, in 2004 05, the Government of Canada invested an estimated $7.6 billion in income support, tax measures and programs for people with disabilities. I use that number because it is hard for me to break down the 2005 06 numbers. We always wait a year so that we can figure out what all of our programs are and add up the numbers. I can give you the most precise numbers for 2004 05.
In 2004 05, it was a 38 per cent increase over previous funding levels over approximately the last eight years.
The federal role with respect to disability generally has largely been the provision of income support through mechanisms such as the Canada Pension Plan, disability component, and the veteran's disability pension program. Those two alone account for about 71 per cent of our spending in the federal government on disability issues.
Tax measures represent the next largest federal investment in income support for people with disabilities. We have measures there such as the disability tax credit, the medical expense tax credit and the Child Disability Benefit.
In Budget 2006, the Government of Canada introduced new measures to help families deal with the costs of caring for family members with disabilities, including those with autism. Specifically, the annual Child Disability Benefit maximum was increased to $2,300, up from $2,044, effective as of July 2006.
The Child Disability Benefit eligibility was extended to medium and high income families who are responsible for caring for a child eligible for the disability tax credit, also effective July 2006. The maximum refundable medical expense supplement was increased to $1000 from $767. In terms of providing disability related supports and services to persons with disabilities, the Government of Canada's primary role is providing block funding to the provinces and territories through the Canadian Social Transfer and the Canadian Health Transfer. In 2005 06, these transfers amounted to more than $15.5 billion.
It is important to note for the purposes of your study that the Government of Canada has no national strategy to address the treatment of autism. Jurisdictionally, provinces and territories are responsible for the delivery of supports and services for people with disabilities, including those with autism.
Within Human Resources and Social Development Canada, while we have no programs specifically targeted to the needs of individuals with autism, we do have programs that help to advance knowledge in general and sometimes knowledge about autism and that also support families and individuals living with these conditions.
Through the Social Development Partnerships Program, the disability component, which is an $11 million per year grants and contributions program, we provide funding to national, non profit disability organizations that are focusing on cross disability issues and that are actively engaged in representing the needs and concerns of Canadians with disabilities. This program along the with the organizations it supports, aims to generate increased opportunities for people with disabilities to participate in their communities.
Through this funding in part we support the Autism Society of Canada, which is an organization that works on a national basis to address issues and concerns common to the provincial and territorial autism societies that provide direct support to individuals and families affected by autism spectrum disorders. Since 1999, the Autism Society of Canada has received grant funding from us for $65,000 per year on an annual basis to help the organizations in the areas of governance, policy and program development, community outreach, organizational administration and management. They also received in 2003 an additional grant of $20,000 to help fund some publication and dissemination of a white paper outlining a strategic plan for the development and implementation of an autism agenda.
Another recipient of funding through the Social Development Partnerships Program is the Miriam Foundation, which received $157,000 between 2002 04 to create a learning centre for autism and developmental disability. This project resulted in the creation of a training centre to ensure best practices and service delivery and to increase social inclusion, integration and participation of people with autism and developmental disabilities. Currently, the Miriam Foundation is receiving $37,570 to enhance communication and information sharing amongst organizations, institutions and groups across the country.
I will move on to another project because it is interesting in light of Dr. Quirion's intersecting remarks on some uncertainty about effective treatment. Through the larger project of Social Development Partnerships, with $11 million in funding, without the disability components, there was money provided to the Canadian Association of the Deaf to provide sign language as an aid to help children with communication disabilities to better integrate in society. The project examined how sign language could be a potential communication tool for both deaf and non deaf children including children with autism. As a result of this research, they concluded that there was great potential and they produced some dissemination materials to promote this as a possible way of improving communication and providing communication skills to autistic children who have difficulties communicating. I thought that was a neat project, actually, that took a particular aspect of one group of people with disabilities and identified it as perhaps a solution taking sign language as a communication skill for another group whose disability impairs their communication ability. I thought that was a very innovative project.
We have a variety of other programs, such as the Opportunities Fund for People with Disabilities, which is designed to assist people with disabilities to prepare for, find and maintain employment. The program does not specifically target people with autism or autistic spectrum disorder but, certainly, individuals with ASD have access to it. The Opportunities Fund eligibility is defined by self identification so it requires no medical certificate. People can go to a service centre and just say that they have a disability and need assistance.
In addition, we also provide federal funding to the provinces to support programs and services eligible to people with disabilities through the Labour Market Agreements for Persons with Disabilities. Given that these programs and services are provincially determined, specific services differ across the country but, generally speaking, are accessible to people with disabilities.
I would like to thank the committee for the invitation to appear today. I am pleased to answer any of your questions.
The Chairman: I thank all of the witnesses for their presentations. I would ask senators to enter into dialogue with you and ask their questions. We will begin with the senator who proposed this matter before the Senate, Senator Munson, followed by Senators Cochrane, Callbeck, Nancy Ruth and Keon.
Senator Munson: Welcome to the committee. From my perspective, we are in a crisis with families who have autistic children. We have statistics from Statistics Canada that show one in 450 Canadians and other statistics the Autism Society of Canada and others that show one in 190 young people are autistic. It is still a mystery. As you talk and we listen to statements here about medical research, which is all very good, we will wake up tomorrow morning and find out there is another autistic child in this country.
From my perspective, there should be no borders when it comes to autism in dealing with this condition. There is not a level playing field in this country. There are different treatments for different people in different provinces. For example, we have a Canadian Diabetes Strategy, a Canadian Strategy for Cancer Control, a Federal Initiative on HIV/AIDS, a Canada Drug Strategy, a Canada Prenatal Nutrition Program, and a Community Action Program for Children. This brings me to the need of a national strategy. How that plays itself out, I do not know.
I would like to ask the witnesses if they agree that there should be a national strategy led by the federal government and bringing the provinces and territories together to sit down and hammer out a strategy, whether it is an envelope of money from Health Canada that has to be specifically directed towards dealing with autism. I would invite the witnesses in any order to respond.
Ms. Mandy: Certainly, the federal government recognizes that it is an important issue. However, we need to recognize that it is only one of many important issues. If you talk about developmental disorders, autism is only one of those. Where do you draw the boundaries and how do you decide how wide you would make a national strategy? Autism and children with autism are certainly a very well organized group. Parents are very vocal and they have had a lot of success in lobbying in court cases. However, is this the case of the squeaky wheel getting the grease? There are other developmental disorders that are not within the autism spectrum that also pose the same types of difficulties for the children and for their families. How do you define where you would draw the boundaries?
Dr. Quirion: I agree that there is a crisis and that governments and families together must try to find a solution.
The numbers are very significant: One in 400 and one in 200. Those figures are very high, and it is true we do not have a national strategy.
If I put my mental health hat on for a few minutes, we still do not have a national strategy. The statistic there is one in five. That is dramatic.
Yes, we must do something, but what is the best way to accomplish this? Is it a national strategy? Is there some other way we could tackle issues? I am not sure. What I am sure of is that other fields such as mental retardation and mental health altogether are in crisis mode.
Ms. Weber: At the Office for Disability Issues, we tend to try to look at these things from a generalized perspective. Therefore, we would not actually recommend a specific strategy on a specific disorder or condition. We would tend to recommend a more generalized strategy for a class of issues. Again, developmental disorders are still a rather small proportion of what we are seeing. There may be large increases.
I would note that some of the definitions of the things we are talking about are very recent. I do not know because I am not a researcher or a scientist, but I know that the definition for Asperger's, for example, according to the DSM was only available in 1995.
I do not know whether the increase that is being cited is due to a rising incidence or an improved ability to diagnose and detect. Sometimes I think that many of these people we are identifying are people who used to be just different, and now we are figuring out more specifically how to categorize and classify.
I know that graduates of MIT who intermarry tend to have a much higher incidence of children with autism than what appears to occur in the rest of the population.
I also know there are large differences between jurisdictions on many issues. If you are an individual who needs a wheelchair and you want to go from a particular province I forget all the exact rules because I do not use a wheelchair, but our stakeholders do try to inform me.
I think there is an example of a professor who wanted to go from Manitoba to Alberta for a sabbatical leave. The province of Manitoba claimed that they owned her wheelchair, and when she wanted to go away for one year only to Alberta, she had to give them back her wheelchair.
Wheelchairs are very individualized pieces of equipment. Some provinces will buy you the wheelchair you want, some provinces will never buy you the wheelchair you want and other provinces will tell you that only if you are on social assistance will they buy you a wheelchair and you can choose from one of three models when there are 200.
There are huge variations in everything we do with respect to people with disabilities across the country. Autism is a fine example of those variations.
Senator Munson: There is a great deal of confusion out there. You mention Alberta. We were just in Alberta with the Standing Senate Committee on Human Rights.
In the autistic community, there are people leaving their homes in different parts of the country thinking if they go to Alberta they will get better treatment. We discovered in Alberta that you have to go through a lot of bells, whistles and hoops to receive that treatment.
I come back to the same issue about the need for a national strategy, and I hope as a committee we can come to a consensus.
In the United States, the Senate unanimously passed recently a combatting autism bill establishing $920 million towards autism treatment, education and research. How do we compare as a nation?
The Chairman: Which witness wants to tackle that question?
Senator Munson: I notice you added up a lot of figures in terms of research, which I think is commendable. It is wonderful to see that, but when we add up what we are paying as a federal government to the provinces, do we compare?
Dr. Quirion: I do not have the figures, but usually with disorders related to the brain there are many different ones we are well below the average in the United States. That includes autism, but it also includes schizophrenia and depression.
They have had a national strategy for many years on mental health in the United States, and we do not. The investment they are making now in autism research and supporting services for autistic children are great. Maybe we could learn from that.
Senator Munson: I totally agree. Other than direct funding, you talked about tax breaks and current tax relief measures under the Income Tax Act. You talked about the medical expense tax credit and disability tax credit.
Can you explain whether or not families with autistic children can claim these tax relief measures? Can that be used towards ABA/IBI therapy?
Ms. Weber: I always try to defer to finance with respect to these types of inquiries. I could undertake to provide to you a whole list of tax credits for people with disabilities, and I could provide you the eligibility definitions, if that will be more helpful.
My understanding is that the answer would simply be yes. Just to be sure and to give you the exact information, I would be happy to ensure we provide that information to you.
Senator Pépin: You mentioned earlier that the tax rebate went from $700 to $1,000. How much do you think a tax rebate should be worth? $1,000 is nothing when you know the cost of treatment.
Ms. Weber: You are absolutely right. I was trying to give you precise numbers to deal with in terms of just three tax credits that had changed. Again, there are more.
There is a disability tax credit and there is the Child Disability Benefit, which is almost $200 per month up to $2,300. There is a long list, so I think it would be better for your purposes if I provided the whole list. There are eight different tax measures that I have, and I can get you the eligibility requirements for them. I only mentioned three in my speaking points.
Senator Pépin: I am thinking that if someone has children suffering from dyslexia and deficit attention disorder, they do not provide any sort of tax rebate for those disorders, and the consultations and treatments cannot even be paid for by the government. We have that in Quebec.
(French follows) Senator Pepin… C'est ainsi au Québec. Je ne…

Gs/02-11-06 (après anglais)(Sén. Pépin)
C'est ainsi au Québec. Je ne veux pas faire de comparaison entre les deux maladies, mais les parents disent devoir payer des consultations mais ne peuvent pas les déduire de l'impôt.
Madame Weber: Je sais qu’il y a une différence entre le système d'impôt du Québec et celui du gouvernement fédéral, mais je ne la connais pas.
Le sénateur Pépin : D'accord.
(Sen. Callbeck : You mentioned all these tax credits …) (anglais suit)

(Following French) Ms. Weber
Senator Callbeck: You mentioned all these tax credits. I would like to get your opinion as to how effective you feel they are in dealing with the financial situation of families that have a child with autism.
Ms. Weber: I have not done that analysis in terms of the costs. Certainly, autism in that extreme I would suspect is very costly. These tax credits probably do not go as far as the costs incurred.
The other thing to remember, of course, is that these benefits usually accrue to someone with an income. People who are in low income situations or on social assistance are facing a very different reality.
With that said, if you are talking about autistic spectrum disorders, there is a wide range there. I think we would need to do a fair bit of analysis to figure out what people are spending or what costs they are incurring in terms of dealing with this.
Senator Cochrane: This is a supplementary to Senator Munson's question. There have been calls for the federal government to amend the Canada Health Act, to have services to treat persons suffering from Autism Spectrum Disorders deemed medically necessary.
When you come to tax breaks and the term "medically necessary," where do they fit in? How can a family apply that term, "medically necessary," to tax breaks? Will there be umpteen questions asked by the parents? Mr. Lafond, you are from Health Canada.
Mr. Lafond: Yes.
Senator Cochrane: The term "medically necessary" really bothers me. We must help the families.
Mr. Lafond: I agree with you. "Medical necessity," either in the federal legislation or even in provincial legislation, is a term that is not always easy to define. You will not find good definitions of this term. We do not have one in the federal legislation. We generally defer to the provinces. The idea is that "medical necessity" should be defined not necessarily by a government or by a funder but through a process where not only the government is involved but the medical profession as well. This is the approach that should be taken. It is not a simple term to define. I agree with you that when it comes to specific services such as the treatment for autism, it may be even more difficult because sometimes you deal with situations that do not seem to be clearly medical. There might be some social issues involved.
Senator Cochrane: How will these parents get the tax breaks?
Ms. Weber: Again, I am not from the Department of Finance so I cannot adequately answer your questions, but for some of these things, for example, medical expenses, you just need to show the prescription or the receipt for the materials or supplies that you got, which usually required a prescription from a doctor.
I can supply you with the eligibility. You are using “medical necessity” in the context of the Canada Health Act, which is different from the way it is used in the context of the Income Tax Act.
Senator Cochrane: Could you supply us with those figures?
Ms. Weber: I can supply you a chart of the tax benefits and the definitions of eligibility that exist under the Income Tax Act.
Senator Cochrane: There is currently no national program in Canada, as Senator Munson has specified, for financing any treatment for autism, in particular, applied behavioural analysis, or ABA, and intensive behavioural intervention, which is IBI, although most provinces and territories provide some funding for such therapy. I personally know of a family in B.C. with two little boys who have autism who say their lives have changed as a result of the ABA.
While the province provides some funding $20,000 the family covers the rest of this expensive therapy.
Could you give us a sense of the annual cost associated with such therapies? Have you no idea?
Ms. Mandy: We have some idea that the figures may range, but again, it is very dependent on the needs of the child and the severity of the condition. They can range over $50,000 a year quite easily if the child is receiving, say, 40 hours a week of one on one intensive behavioural therapy of the type that you described. Other than that, no, I cannot give you an idea.
The Chairman: The figure $60,000 has been advanced as a possible average.
Senator Cochrane: Could you tell us how provincial and territorial programs compare and differ?
Ms. Mandy: I cannot tell you in any great detail. We have compiled some information in that regard. I do not have all the details at my fingertips, but I would be happy to provide what we have and what we know about those programs.
Senator Cochrane: Can you provide information for each province?
Ms. Mandy: We have done research and we have compiled a document that lists what we know each province does provide.
Senator Cochrane: I think that would be helpful.
Ms. Mandy: We would be happy to provide that.
Senator Cochrane: Models are very important. Does one province stand out as a model in the delivery of treatment and in the support services of autism? Do you have a model that we can tap into and say, yes, this works; this is an example?
Ms. Mandy: Provinces take different approaches to it. Some people might hold up the Province of Alberta as a model. As I said, they were affected by a court decision back in 1996 that said they had to fund these services. Because of that, they may be considered to be further along that road in the development of programs. Whether they are the best programs or the most effective programs, I do not know.
Senator Cochrane: In my province, there has been a program for the past number of years whereby an individual comes in one on one to help the child and do special things with that child, but I do not know the results of that program. It would be interesting to have that information.
Do you have any idea how many children have access to therapy in each of the provinces?
You do not.
How many children cannot get access? That is another concern that I have. Is there a move afoot to help the parents?
No one can answer that one.
The Chairman: The additional information the senator asked for is well warranted. Please provide whatever you can to try to answer Senator Cochrane's questions, which are all legitimate.
Senator Callbeck: I was wondering about the waiting lists. Someone spoke here about them and just how large they are and how one province differs from the others in this regard.
Is there a shortage of the autism specialists that provide the treatment? What about the training that a person has to take to become an autism specialist? How long is it? Can you provide any information on that?
Mr. Quirion: Again, it is not easy to answer that. There are no national guidelines, so it depends on each province. Often, to become a specialist, there is added training after a certain type of training. You work with a doctor and his team to learn the various treatments that the team focuses on. Again, there is the problem that not every expert agrees that all these treatments work effectively with an individual child. Depending on the child, some approaches may work better than others. There is still a lot of need for evidence based data that, unfortunately, we do not have. We need to train more people, at least in Quebec.
Senator Callbeck: The training could be different in every province?
Mr. Quirion: Yes.
Senator Callbeck: There is no standard?
Mr. Quirion: In the province of Quebec, it is not the same as if you are based in the McGill Montreal network compared to the Quebec City network.
Senator Callbeck: How long does it take?
Mr. Quirion: In Montreal, it will be about a year, but I do not know in other provinces.
Senator Callbeck: Is there a real shortage in Canada of these people?
Mr. Quirion: I would think so. There is a shortage in Quebec and I would think in other provinces as well.
(French follows Sen. Champagne: Depuis que je sais…)

JL/02-11-06 (après anglais)
Le sénateur Champagne : Depuis que je sais que nous allons étudier ce problème, j'ai porté plus attention à ce qu'on peut lire ou voir à la télévision à ce sujet. Au cours des dernières semaines, j'ai vu quatre reportages différents, soit deux aux États Unis, un au Canada et un sur la chaîne TV5, où on parlait des différents moyens d'aider les jeunes qui souffrent d'autisme. Dans les quatre reportages, on prenait une optique différente.
Quelles que soient les sommes faramineuses que l’on investisse, le domaine de la recherche est sans doute celui qui mériterait le plus cet argent dans le but de trouver un remède. En s'y prenant chacun à sa façon sans arriver à des résultats probants ne mène nulle part. Alors que faire, à votre avis?
M. Quirion : Je suis d'accord que nous sommes devant un défi. Comme le sénateur Munson le mentionnait, plusieurs familles d’enfants autistiques souffrent. Malheureusement, il est encore très •••, en terme de recherche, pour dire qu’une approche est plus efficace qu’une autre avec certains types d'enfants autistiques. Il manque encore beaucoup d’information.
(Mr. Quirion: There is no gold standard, whether we like it or not…) (anglais suit)

(Following French Mr. Lafond continues).
There is no gold standard, like it or not. We need to find out more about what works with one type of child compared with another. In the States, there are various powerful voluntary organizations, such as Autism Now, Speak Autism, and so on, which are often started by a family member. They believe in one way to treat children. Maybe it works for their children, but not necessarily for others. That is a big challenge in the field. We do not have the gold standard. It is unfortunate, but that is the reality.
Senator Keon: Following along that line of thinking, Mr. Quirion, in my other life I had a lot of experience with getting drugs and procedures listed for payment. It really boiled down to the need to have solid evidence that it was effective. The thing that troubles me about autism and maybe Mr. Lafond can lead on the answer, but I would like you all to join in, and you in particular, Dr. Quirion is that it is not at a stage of maturity and definition, and so forth, from a scientific point of view, where there is evidence that I know of, from an epidemiological point of view, from a clinical trial point of view, to say what really is effective in various circumstances.
This comes back to the Canada Health Act, which applies. You have to come down to the provinces and say: Yes, this is an essential service; and yes, Ontario, you must list this and you must pay for it.
The bottom line is: Where are we with this right now? Mr. Lafond, perhaps you could lead off. Dr. Quirion, you have scientific knowledge available through your institute, so perhaps you could help us, too, and the others could please join in.
Mr. Lafond: The point that you made is certainly an important one. Before listing, a decision can be made that coverage will be provided, especially under the parameters of a national program or provincial program that is universal. You need solid evidence and a good understanding of the condition and what will happen and whether you can provide coverage for these services, whether the resources are available, the human resources are there, whether the treatment plans can be implemented. That is one of the challenges the provinces are facing. As far as we are concerned, we are not at the federal level generally negotiating these services with the provinces. It has never been the intent or the approach of the Canada Health Act since 1984 to identify specific services and then go to the provinces and say: We feel now that these services should be covered. This decision needs to be made at the provincial level, again in conjunction with the stakeholders, the professionals, the medical doctors, and other health professionals.
In this case, more research needs to be done to develop this evidence. The federal government is quite involved in trying to support this. Whether we are at the point where provinces could be in a position to make that decision, I am not sure we are there yet. I think they are providing services on their own terms and conditions. This is something we see quite often in different provinces. Eventually, this could lead to a more across the board approach.
Ms. Mandy: Of the provinces that are providing services, they are equally split between ones providing them under the auspices of the Ministry of Health and other provincial ministries, such as social services or family and children's services. It very much speaks to the nature of neither the services that are provided that, as I said, are neither physician nor hospital services. There are a lot of social skills training and is a lot of educational supports and whatnot. Classifying these as particular types of services is also difficult. Provinces have made different choices as to how and under the ministries they will provide the services.
Mr. Quirion: To add a bit more to what I have said, as you mentioned, evidence is still lacking. We want to help and you want to help. Of course, it is traumatic on families who have an autistic child. Research, unfortunately, often takes time. We need to do the research and to provide the evidence.
Over the next few months, we could have some kind of workshop like that. I am sure you will meet with many of these experts, but they could include voluntary organizations in Canada, well established experts from McGill, from the University of Montreal and from McMaster. We could bring these people together and brainstorm and discuss in detail the evidence that this behavioural approach works, under which conditions, and what type of child and where it might do some harm. There are some adults who suffer from autism that believe that some of the treatments can do harm. Maybe it is rare, but it needs to be taken into consideration. Having that kind of feedback from better experts than I that is, true experts who work with these children all the time could be helpful to your deliberations.
(French follows TAKE 1200 Sen. Pépin, Dr. Quirion, je comprends…)

AD / 02-11-06 (après anglais)
Le sénateur Pépin : Je pense qu'on manque d'évidences pour prouver l'efficacité de certains traitements et pour déterminer lequel convient le mieux aux enfants, selon leur âge — et même chose pour les adultes. Cependant, si on a la preuve de l'efficacité de certains traitements, est ce qu'on peut comparer cela par rapport aux coûts, à savoir combien d'argent les gouvernements devraient octroyer et est-ce qu'on serait capable de balancer les deux?
M. Quirion : Si on avait les évidences, comme par exemple le traitement A fonctionne très bien dans telles conditions et on obtient de bons résultats, il serait peut être plus facile de convaincre les provinces. On pourrait évaluer que cela va coûter 60 000 dollars par an, par enfant, et en bout de ligne, on améliore énormément la qualité de vie de l'enfant et de sa famille. De plus, on sauve des coûts associés aux services de santé qui surviendraient plus tard dans la vie. On pourrait avoir plus de données probantes. Présentement, je pense qu'on ne les a pas.
Le sénateur Pépin : Est ce à cause d'un manque de perspective, d’un manque de fonds ou de personnel?
M. Quirion : C’est un peu comme en santé mentale ou pour d'autres maladies neurologiques comme les maladies du cerveau. On commence un tout petit peu à comprendre comment fonctionne notre cerveau. C'est une boîte fabuleuse, mais on est encore ••• dans notre connaissance de l'autisme et des maladies associées à l'autisme. On voudrait aller beaucoup plus vite. L'incidence semble augmenter d'après certaines données épidémiologiques. Il faut faire quelque chose, mais on manque de données.
Le sénateur Pépin : Cela veut dire qu'il faut donner davantage d'argent, que ce soit de la part du gouvernement fédéral ou des gouvernements provinciaux. Vous avez mentionné dans votre présentation qu'il y avait un bagage génétique. Actuellement, vous en êtes encore au début de la recherche. Tantôt, il y a une de vos collègues qui a mentionné qu'il y avait deux personnes qui venaient de la même université, qui se sont mariées et qui ont eu des enfants autistes. Est ce qu'on en sait suffisamment pour dire que les cas sont concentrés plus dans une certaine région, ou certaines villes, ou il faut encore faire de la recherche?
M. Quirion : Il faut faire attention, c'est encore •••. Il y a plusieurs différences, il y a un spectre, mais certaines évidences semblent suggérer que l'incidence est un peu plus importante chez deux personnes ayant un QI très élevé. Pourquoi? On ne le sait pas.
Le sénateur Pépin : Il faut alors continuer à vous donner les moyens de poursuivre vos recherches.
(Sen. Munson : Dr. Quirion, I would like to take you…) (anglais suit)

NP November 2, 2006
(Following French, Sen. Pepin, poursuivre vos recherches.)
Senator Munson: I have a short supplementary. Dr. Qurion, I would like to take you up on your offer. The workshop concept about which you spoke is a very good idea. Would you organize it and bring all these people to Ottawa to brainstorm? It is that urgent.
Mr. Quirion: With your help and support, we could organize it. Certainly, it will involve voluntary organizations. The way we do business, it is usually not just us; it must include the base as well. I am sure they will be willing to be associated with us. I talked about this with a member of Autism Society Canada a month ago.
The Chairman: It might be something useful for us to do. I am sure that we will be hearing from some of the people Dr. Quirion mentioned anyway. It might be useful to do it in that framework.
Senator Fairbairn: I am glad you are here today and that we are on television. People do watch. This is an issue that so many Canadians do not know much about or find it difficult to understand.
The questioning today comes down to two major areas: Should the federal government make a decision about expanding treatment to all of the children in this country who need it? If so, do you have any idea how much money that would cost?
The area involves medical professionals. This is an incredibly difficult issue, not just for us, but for people in the medical profession as well. If we, as a country, all of us together, decided to institute a widespread national program for this, would we have the specialists, the therapists? Would we have enough personnel to make this possible?
How long would it take for therapists with a specialty to deal with this condition? How long would it take to get a person through whatever medical school might be required?
You are nodding your head vigorously.
Mr. Quirion: Senator Callbeck mentioned several things. There is much variability among provinces, medical schools and health care professionals in terms of exposure and training to recognize and to treat or supervise treatment of people suffering from autism. I do not think there is any national guideline in that regard. They are exposed to it, but there is probably still too little training in this area in medical schools. We need to think about that as well and ask an expert such as Eric Fombonne and others what it would take to ensure that you have a baseline, at least of clinical knowledge, across the country for the health care professional. What would it take and what would be the role of the federal government in that regard? That is something that needs to be discussed.
Maybe my colleagues have other answers.
Senator Fairbairn: Again, how long would it take to train a committed individual who wanted to treat autism? How long would it take to train them? Would you have to have a doctorate? Would you have to have some kind of medical certificate and then build on top of it?
Mr. Quirion: Usually it involves a health care professional. It does not need necessarily to be a medical doctor. There will be a medical doctor on the team, but there could be other specialties. As to how long it takes, I give the example of a team in Montreal. It takes usually about a year, but they go in depth. I am sure it will not take that long for every professional. It depends how focused you want to be. If you include various research components into the training program, then of course it will take more time.
Senator Fairbairn: It will also take more money.
The Chairman: Ms. Mandy, from your response to one of the first questions of Senator Munson I got the impression that a national autism strategy was perhaps not warranted in and of itself without a broader category. Yet we do have national strategies for diabetes, cancer control, HIV/AIDS, Prenatal Nutrition Program, et cetera.
I want to get a clear understanding of why this would not fall into a category that warrants a national strategy. To amplify that a little further, particularly when we have people dealing with tremendous emotional and financial challenges in this, this cost of $60,000 which is not being reimbursed by the provinces in sufficient amounts, and the very kind of things you talked about today in terms of research and the lack of certain information. Is this not the kind of thing that really would fit into national strategy development?
Mr. Mandy: I was not meaning to suggest it would not. I was trying to suggest that it is always very difficult as to where you draw the lines and how would you go. When we were looking at some things within Health Canada, various people were saying why are you focusing on autism? What about pervasive developmental disorder? It does not fall within that spectrum, but often parents use similar types of treatments. The intensive behavioural intervention, they are facing the same types of funding challenges as parents of autism are, so why would you just look at autism? Why not at least broaden it to developmental disorders?
Then if you look at developmental disorders then you get people asking what about all children with special needs? What if we have a child who has a need for dietary supplements or special equipment, et cetera? There are many competing demands out there and can you really focus just on one group? That is all I was trying to suggest. These are always choices that have to be made. I am not suggesting autism is not important, but that there are other families with similar needs, challenges, funding problems that would also want similar treatment. Maybe we need to be able to look at that as well.
The Chairman: In terms of the cost of this, because this is a big issue, we have been considering a catastrophic drug treatment program. It is not the same category, but there are catastrophic costs involved here for a lot of people. Would that not warrant that kind of federal intervention, similar to the drug program that is being proposed?
Ms. Weber: If you want to compare this to diabetes and cancer, you are talking about a very different scope. You are talking about a very different proportion of the population. Diabetes and cancer are affecting lots of people and are our number two and three killers. Autism is not that, so it is on a very different scale.
The other issue here is, as has been evident in Dr. Quirion's remarks and I tried to allude to it as well, we do not know a lot. In terms of the time it takes to accumulate knowledge and understanding, we have only recently even begun to identify autistic spectrum disorders as a real category of disorders. All of the interventions around treatment have suggested that we do not know how to treat this, which then interferes with what can be required or prescribed or even trained up to, because we do not all agree; there is not a known solution to this. It is partly due to the huge variations in this spectrum disorder. It is probably due in part to the need to customize and tailor the responses.
The thing that stops us from embracing this wholeheartedly is partly the scope. If you wanted to generalize a bit more, there are larger groups that you might be able to deal with as a class of issues. I know that is not always popular and not always successful because it is hard to attract specific attention for it.
Also there really is not much known about what is really effective or even whether we have an epidemic, again because of the definitional issues and our increasing ability to identify and even diagnose that there is a particular situation.
The numbers are all over the map. You would like to know a lot more about this issue, and about all of the different kinds of things that people are trying to do to address this series of problems, but I do not think we know the answer.
The Chairman: Given what you do and do not know, what do you think would be the one or two issues this committee could tackle that would help shed more light on this whole matter and to lead towards something useful and productive? I would like you all to respond to that.
Ms. Weber: As I sit back and listen to the discussion, I think that the call for research is really the most pressing. That is not always a popular response because it seems like it is more of a delay. Again, it has taken a long time to even get to the point where we are identifying these spectrums. We do not know what the treatments are. We have people who are strong advocates of particular treatments but there is huge variation out there. There is no treatment plan or guideline that says thou shalt do this when your child is diagnosed with autistic spectrum disorder or Asperger's or anything within that category.
Dr. Quirion: I will be biased. I agree there is need for more research and providing the evidence. At the end of the day, I think that since it is such a broad spectrum of disorder that it may be a little bit like hypertension. In 10 or 20 years’ time we will look back and say, yes, this form of autism we treat with drug A, as we do with hypertension if it is related to kidney or the heart or blood vessels. We know very little, so we need more research.
Another aspect that could be useful and provided to you fairly easily is having some kind of better data on what each of the provinces in Canada are doing on that front. That will probably be fairly easy to obtain and useful for us to know.
Senator Munson: We did not know about different forms of diabetes, we did not know about different forms of cancer, but it did not stop the country from exploring new ways and means of treating these particular diseases and having a national will to come to some kind of solution and getting things done.
The Chairman: Let me thank the four of you for coming today and for your contribution. This is the beginning for us, and we look forward to getting more data on some of the questions that were asked. We are interested in learning what the provinces are doing, and anything else you can provide us would be most helpful.
We will adjourn the public session, but I do need some time with committee members in camera to deal with future business items. With that I will adjourn the public portion.
The committee continued in camera.

[Isaac]

>"Let's postpone this difficult decision to the next generation.
>That's the natural inclination of political leaders."

Dave, thank you for the thoughtful quote from Jimmy Carter.

I too, have a quote to share with the group. This is one that speaks volumes about the travesty we're struggling to comprehend. Penned two years ago, it's the most profound social commentary resultant of the Auton case.

"I conclude that the failure [to fund treatment for children with autism] is a statement that their mental disability is less worthy of assistance than the transitory medical problems of others. It is to say that the community was less interested in their plight than the plight of other children needing care and adults needing mental health therapy. This is a socially constructed handicap …" [Madam Justice Saunders, October 9, 2002, Court of Appeal for British Columbia]

Saunders' unassailable truth needs to be repeated as often as possible. It must be disseminated as far and as wide as possible, to anyone who will listen. The "socially constructed handicap" now affirmed and endorsed by the highest court in the land, is PRECISELY what Justice Saunders calls a "community … less interested in" the treatment needs of children afflicted with autism, meaning that our children are somehow deemed "less worthy" by ALL officialdom, including the high court.

On the most specious of grounds, the Supreme Court of Canada chose to betray our children … and the Charter of Rights and Freedoms itself. Postponement of difficult decisions on the part of politicians is one thing. That those powerful politicians and health policy technocrats can actually influence a purportedly independent high court, to the determent of a nation's cherished constitution and "Bill of Rights" … well, that's something ENTIRELY different.

Isaac (Miki's Dad)

[Super Dad]

Regarding the statement from Jimmy Carter:

I don't believe our politicians are thinking that far ahead. They're thinking:

"Let's postpone this difficult decision to the next premier / prime minister."

Tony

[David Chan]

Hi everyone,

Hope everyone had a fun during the holidays.

I came across this quotation about government decision making,
I thought I would share it with everyone.

"Let's postpone this difficult decision to the next generation".
That's the natural inclination of political leaders.

-Jimmy Carter (President of the United States)

Just some food for thought

Dave
Mr. P's Dad

[Deleted User]

The meeting with Mark Warawa is also covered in the Langley Advance on page 6.
Natasha
Zoe's mom

[Isaac]

Nancy's amazing autism treatment petition
event with a B.C. MP is in the story below.
Thank you so much Nancy!

h
ttp://featbc.org/Times_12_24_04.pdf

[Louise Watson]

dont worry Ursula Dianne and I are on it, we are on a wait list to see him, and educate him on the science behind ABA. Merry Christmas everyone all the best in 2005, Louise Watson

[Isaac]

I'd like to share a few thoughts on Hon. Ujjal Dosanjh, since we have yet more of his blather in Hansard.

Hon. Ujjal Dosanjh: "Mr. Chair, this [autism treatment] is obviously again a very difficult issue. In health care we deal with difficult issues from time to time. I was in fact part of the government in British Columbia when the case that recently came before the Supreme Court was decided. The case in British Columbia. I believe I was the attorney general."

As B.C. Attorney General, and then B.C. Premier, Dosanjh was responsible for the so-called "difficult" decision to appeal the Auton case. Dosanjh's provincial government chose to fight rather than help children with autism, in a bizarre delusion that such sacrificial offerings to the Socialist gods of Medicare would forestall a fiscal calamity for the Medicare system — utterly fictional rubbish.

Hon. Ujjal Dosanjh: "I spoke to a constituent of mine several weeks ago during one of my constituency days. He has a 12 year old or 13 year old autistic child. The man was in tears."

Never forget: Dosanjh is the reason the Auton case went to the Supreme Court of Canada. He appealed the case and chose to block necessary health care for children with autism. Dosanjh can't feign compassion now for a father in tears over his autistic child when it is Dosanjh himself who is that child's enemy, the one who denied that child hope, the one who does not believe in that child's right to be in Medicare.

It is beyond cruel to now be forced to grovel before THIS Health Minister — this duplicitous politician — to beg for anything even approaching a meaningful national autism strategy. Preserve your self-respect. This is the wrong address to seek progress on autism treatment. Bypass Dosanjh and unceasingly expose him for being the harmful hypocrite he is where autism health care is concerned.

Hon. Ujjal Dosanjh: "There was not much I could do as a federal politician. These are provincial jurisdictions and the provinces and territories make difficult decisions and difficult choices."

And the hypocrisy spigot opens wide — classic Dosanjhism.

When Dosanjh was a provincial politician in full charge of this provincial jurisdiction, there was plenty he could do, but he chose to do NOTHING for the autism treatment problem, except of course, fight as hard as possible to make sure the Auton case never succeeds in achieving justice for children with autism.

Hon. Ujjal Dosanjh: "But I am prepared to take a leadership role at least in terms of coordinating our response across the country and discussing what we collectively as leaders in different levels of government can do."

He already HAD a leadership role and showed with actions what he's prepared to do with his leadership: ensure the defeat of Auton. And he needn't bother "coordinating … [a government] response across the country." That's already been done. Governments were VERY well coordinated against children with autism last June in Ottawa: there was a sea of black-robed provincial attorney general lawyers from across the country at the SCC hearing, fighting us as intervenors — including Ujjal Dosanjh's federal government. Dosanjh didn't mention that part in Hansard, that his government helped kill any chance kids with autism have at inclusion in Medicare to overcome this horrible disorder.

Please, Minister Dosanjh, spare us more hypocrisy. It's just too painful for even a callused veteran of the autism wars to bear.

Isaac (Miki's Dad)
FEAT BC

[Ursula Lee]

Re: MP James Lunney

I am very concerned that the issue of autism is being lumped in with chiropractic and stool test for pancreatic enzymes and natural products. I would rather autism not be brought up at all than to have it spoken of in the same breath as these other issues which are controversial, alternative or paramedical. Autism treatment is none of these and I think it could harm autism advocacy if people begin to think of it in the same category as "alternative" or "complementary" health care. I hate to discourage any exposure we can get for autism, but I think in this case it could backfire.

[Author]

Replies