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Jason Oldford Testifies Before the Canadian Senate Committee Studying Autism Funding In Canada

Posted Sep 12 2008 11:32am

Jason Oldford is a person with autism who served on the Board of Directors of the Autism Society of New Brunswick for several years where he played a key role. On December 6, 2006 Jason Oldford testified before the Standing Senate Committee on Social Affairs, Science and Technology which was meeting to consider the inquiry on the issue of funding for the treatment of autism in Canada. Jason's testimony was recorded in Hansard:

" Jason Oldford, as an individual: I am honoured to address this committee. I was diagnosed with autism in 1974 when not much was known about it. I will tell you a bit about myself. I will not take long. I have quite a few things to say about funding for treatment.

I still have a few weaknesses with my autism. Eye contact is one of them. My social skills are not perfect. They are not up there with a typical person either.

On the plus side, my language developed normally. I was able to read by the age of three. I know trivial matters that other people would not dream of knowing. I tend to interpret things literally sometimes.

I have two university degrees and I attended public school with all the other children. I was not put in a special education class.

The reason I accepted the invitation to appear before this committee was to tell you what I would like to see. I would like to see severely autistic people become more like me, or more like others like me, to become more high-functioning. It can happen. I believe it.

There are about 100,000 people affected by some form of autism across Canada. When their parents received the diagnosis, immediately the research started looking for a treatment. They came across this ABA, applied behavioural analysis. It is the only evidence-based treatment that is available. The only drawback is that it is expensive. They cannot afford it. For that reason, they go to the respective provincial governments and try to get them to do it. It has not worked out the way they planned.

Autism is a life-long disorder. There is no cure. There are several treatments. Only one is evidence-based. There is no cure.

The key is early intervention, early diagnosis, and early detection. If treatment is started immediately upon diagnosis, or soon thereafter, within three or four years a child could enter school and perhaps not need ABA. He could go on, get a high school diploma, get university degrees, and be able to contribute to society.

I was pleased yesterday when I heard that the House of Commons had passed motion M-172, for a national autism strategy. I turned 36 yesterday. That news would rank up there with one of the best birthday presents I could receive.

The provinces worry about resources and having to live within their means. I understand the provinces have to live within their means. That is where the federal government comes in and helps out. If the federal and provincial governments put their heads together and work this thing out, a solution can be reached in the autism treatment situation we have in this country, in every province and territory.

There is a concern about having autism treatment funded under medicare. I am in favour of that. Ultimately, it is up to the provinces and territories. Each one has its respective medicare plan. Should any provinces decide not to fund this treatment under medicare, not only do I think they are making a mistake, I think they should find some place in their respective budgets to fund that treatment.

You also come to the issue of education. We need therapists certified in ABA. We need people in our schools trained to deliver ABA to autistic students. We need enough so that there are no waiting lists.

I have heard stories about people who have tried to get into speech and occupational therapy; some have told me were on a waiting list for months or years. Others are still on waiting lists. That is a problem that needs to be addressed and solved.

ABA is an expensive treatment. You have probably heard the figure $60,000 per year per child. It is derived from 52 weeks a year at 40 hours a week at $30 an hour.

Parents put themselves on the verge of bankruptcy when they have to pay for that treatment out of pocket. I certainly understand the situation they are in. I am amazed they can cover the treatment they need for their child and still pay the bills. How they do it, I do not know. Somehow, they get it done.

Early intervention, detection and diagnosis, can lead the way to a child's achieving his or her full potential, to become productive in society. If Ottawa and the provinces work together, we could have a solution.

As was mentioned, ABA is not perfect. According to studies, only 47 per cent of those tested were indistinguishable, but 47 per cent is a lot better than zero.

If provinces and the territories and the federal government all work together on this, it will lead to solutions. None of the world's problems was ever solved by arguing; none of the world's problems was ever solved by doing nothing; none of the world's problems was ever solved by worrying.

If Ottawa can get together with the provinces and territories and come away with a solution — and I am confident that they can; I am confident that they can accomplish this — just think of how many children will not be in group homes or institutions. Think of how many children will be able to contribute to society if they get this treatment. With the provinces and Ottawa working together, I know that can happen.

..

Mr. Oldford: Yes, I was recommending federal leadership with the federal government and the provinces agreeing on something to fund evidence-based treatments. The bill that was passed yesterday talked about evidence-based standards. That is good. It talks about developing innovative funding methods, and that is good too. I read an explanation that said that that means that the provinces, territories and federal government discuss how to fund evidence-based treatment.

The only evidence-based treatment that currently exists is ABA, but there may be more to come. Judging by what I have read, I think that sooner rather than later ABA will have company in the evidence-based treatments category. If any other evidence-based treatments were to come up I would support those, too, especially if they cost less than ABA does.

The governments must agree on how to fund a treatment that is proven to be scientifically validated and evidence-based.

...

Mr. Oldford: I agree with every word that Ms. Harrisson. I do not have any statistics on the number of adults that are autistic, that are in group homes or that are in institutions. I would say that a small number of autistic adults are in group homes or in institutions. I could be wrong, but I do not think there are that many.

When you read about autism, you read about autistic children. Autism is diagnosed during childhood. Some of the higher functioning types of autism can be diagnosed in adolescence or even adulthood.

Adults still need treatment. In the last session one of the things they discussed was age restrictions. I do not think there is any need to have them; they are discriminatory. Once a child turns five or six years old and still needs treatment, they should not be cut off. They should still get the treatment. If someone is diagnosed as an adult and needs treatment, they should get the treatment.

Getting back to housing, as I mentioned earlier, whoever works with autistic people in group homes and institutions has to have the proper training and has to know how to deal with autism. If they do not, it is not a good situation. There is also a need for proper housing for people with autism, not just in my home province of New Brunswick, but in every province across Canada.

...

The Chairman: Do most people with ASD live at home with parents or do many live on their own?

Mr. Oldford: I would say a good number of them live with their parents. I lived with my parents until this past July when my brother and I bought a house. I would think that most autistic people do live at home.

That brings us to another issue: employment. When they become adults, most people with autism are either unemployed or underemployed, which is the reason they live with their parents or in group homes. They do not make enough money to be self-sufficient. It is a bad situation. That should be discussed, too, when they discuss the treatment issue.

..

Senator Munson: There seem to be more and more diagnoses of autism; one in 166 is the new figure. With these diagnoses, we either pay now or later, and pay big later. We will have the statistics on homes like this if this keeps up this way. Do you agree?

Mr. Oldford: I would have to agree with that. I have heard people fighting for treatment telling the governments that, as you said, Senator Munson, the governments can pay now or pay later. We understand this treatment is expensive, but if you pay for it now, look at the return you will get on your investment. The people with autism will get out in the real world and get jobs, and that will stimulate the economy. Or you can pay later, which means they will go into group homes and it will cost the taxpayers a lot of money in the long run to keep them there.

..

Mr. Oldford: We do need more autism awareness. As Mr. Hooker has mentioned, many people look at us as low-functioning people because they view autism that way. They see it on television and read about it in the papers. They think, "Boy, I am glad I do not have a child like that." Even in the most severe cases, autism is not the end of the world.

One way to promote awareness is through columns in newspapers and television appearances, as Mr. Hooker said. I would add that perhaps more people with autism spectrum disorder could be invited to speak at conferences. One of the measures that the government announced last week in its autism strategy was that there would be a national autism symposium next year. At that national symposium I would like nothing better than to see people with autism being invited to speak.

...

Mr. Oldford: Education is required for teachers and employers. However, as for team work, people with autism prefer to work alone. Sometimes when you put people with autism into a team setting they can become a bit temperamental and a bit hot under the collar. It could be because the other team members do not agree with the suggestions, or for other reasons. On the school front, there have been stories about even the most high-functioning students becoming aggressive. It is not their nature but it happens when they are frustrated at not being able to communicate their feelings appropriately. In many cases, teachers will send those students to the principal's office, put them on detention, suspend them from school or send them home for the day, which is an inconvenience these days for parents because in most families, both parents work outside the home.

Employer and teacher education is needed when it comes to autism and how to deal with it. They need to know how to deal with situations that arise that could be caused by the autism.

...

Mr. Oldford: Sometimes I do find myself in a situation of the type you mentioned. More often than not, it is advising parents of autistic children. Basically, all I give them is words of encouragement. I am in no position to tell them how to raise their children.

There is quite a large autistic population, even in a small province like New Brunswick. The only advice I give them is just do not give up the fight.

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