Ottawa area Father Protests on Parliament Hill

[Guest guest]

An Ottawa area listmate shares with us:

I have been protesting on Parliament Hill every weekday at lunchtime with a

sign that says " Kids with Autism need Healthcare Not Waiting Lists " . I have

been protesting for the past four months. My son has been on waiting lists

since he was diagnosed in December.

Anyway, a person in a motorized wheelchair approached me a while ago and

indicated that he was the publisher of a newspaper for disabled persons

" Disabled and Proud/Access Now " . He invited me to submit an article.

Attached is the article that is published in the current edition that just

came out.

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Access Now: August 2004 Vol 3 No 4

Autism....A voice from Parliament Hill

lack of Healthcare Services for Children with Autism

I used to be a proud Canadian. I loved this country and believed that we

were a caring, compassionate society. I used to believe politicians when

they said that healthcare was the number one priority, which made us so

superior to the U.S.A. because we had a " universal medicare " system and

they did not. Well, all that changed when my youngest son was diagnosed in

December 2003 at CHEO with Autism.

For the past four months I have been protesting on Parliament Hill every day

during my lunch hour with a sign that says " Kids with AUTISM need Healthcare

not Waiting Lists " . I have learned a lot about autism since December. I

have also learned a lot about the nonresponsiveness, dysfunction and

discrimination in the healthcare system. I am no longer the proud Canadian

that I once was.

Autism is a pervasive development disorder that affects approximately one in

200 kids. For a variety of reasons that no one is quite sure about, the

prevalence rates are rising and were recently quoted in an American medical

journal as 1/16! Children who are diagnosed with autism have difficulty

communicating, interacting with others, and have corresponding behavioural

problems. Many seem to live in their own worlds. There is no known cause,

and therefore no known cure.

But there is hope! Since the 1980s, medical researchers have known that

when a child is diagnosed with autism, the application of Applied

Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI

therapy can have a dramatic effect on a child's development. When a child

is diagnosed, usually at the age of three, there is a window of opportunity

to apply the therapy on an intensive basis (up to 40 hours a week) for two

to three years. When this is done, studies show that half of the children

develop to such an extent that they can enter the school system and function

at an average level with no special assistance. The rest of the children

make significant development. Without the therapy, the children would be

doomed to the tragedy of a life in another world and possible

institutionalization.

For a parent of a child with autism, getting the therapy for the child is

the most important thing in the world. I thought it would be

straightforward here. After all, we have universal healthcare, right?

Think again! The Ontario government instituted a " Preschool Autism Program "

several years ago but they do not provide it enough funds to do its job.

Currently, 500 kids are receiving the therapy and there are over 1,100 on

waiting lists. My son is one of them. We were told that it could be a year

or even more before our son would get government supplied therapy. But we

were also told that we couldn't wait! The best chances of development occur

when the therapy is given right aware to a young child. To wait and give it

later will not bring the same results. You have to do it while their brains

are still growing and before the bad behaviours become entrenched.

So my family has done what many others in similar circumstances have had to

do. We went to the private sector and hired the specialists to administer

the therapy to our son. It is not easy to find the right people. And what

is the cost? About $45,000 a year! We applied to the " Special Services at

home " Program of the Ministry of Community and Social Services for at least

some financial assistance. Guess what? We are on a waiting list there too!

And we have no idea when we will get any assistance, if at all. In the

meantime, we are facing incredible financial hardship that is unsustainable

in the long run.

The Federal government keeps talking about transfer to the provinces of

billions of dollars to reduce healthcare waiting lists. The McGuinty

government just announced a new " healthcare premium " to do the same. But

the provinces do not consider the provisions of ABA/IBI therapy to autistic

children to be healthcare. The billions of healthcare dollars flying around

don't get shared with autism programs which are dealt with under separate

budgets.

Across Canada, from Newfoundland to B.C., parents of autistic children have

had to sue governments and file complaints with the Human Rights Commissions

to get the government to realize that not providing scientifically based

healthcare services to autistic children is discrimination. That is what it

has come to in this country. The parents of the weakest and most vulnerable

members of our society, disabled children, have to sue to get healthcare!

But parents have been winning their cases across the country. On June 9,

2004, the Supreme Court of Canada (SCC) heard the famous " Auton family case "

from B.C. Even though the BC Supreme Court ordered the provincial

government to supply the therapy services, the government appealed to the

SCC and every province and federal government intervened against the

children. Shame! What are their arguments? That ABA/IBI is not proven to

work? But it does! That the courts should not tell the government how to

spend money? Where else is a victim of healthcare discrimination supposed

to go? The courts are a solution to government non-responsiveness. They

also claim it is too expensive. But not doing anything to try to help

autistic children is even more expensive! Their arguments are just plain

wrong. The governments think our choice should be institutionalization or

financial ruin. No thanks!

I hope the judges will have wisdom to see that the discrimination against

kids with autism has to stop. Until it does, I will continue my protest on

Parliament Hill. Feel free to come and join me.

Kavchak