Senate Committee on Autism

Funding for the Treatment of Autism referred to the Standing Senate Committee on Social Affairs, Science and Technology for Study and Report

Dear Friends,

Please see below what took place in the Senate Thursday afternoon (at 6pm).

After all this hard work, by so many, it appears that we finally got funding for autism treatment on the agenda! It is on the radar screen.

What happens now is not within our control obviously, but we can have an impact on the final report and its recommendations to the government if we all speak up. We need to speak up now more than ever. This committee must hear what each of us wants them to know.

Please take some time to think of a submission that you would send to them. It can be just a short letter or a longer text. Please jot down some notes now with a view to writing a more elaborate document for the committee's benefit.

Please tell your friends in the community from coast to coast about this opportunity and encourage them to make their voice heard. A few lobbyists alone can't do it. We need all of you to please contribute to the delivery of very important messages.

Please also send a message of thanks to Senator Munson. He is a great ally for our cause.

Email: munsoj@sen.parl.gc.ca
Tel: (613) 947-2504
Fax: (613) 947-2506

Thank you!

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Debates of the Senate (Hansard)
1st Session, 39th Parliament,
Volume 143, Issue 27
Thursday, June 22, 2006
The Honourable Noël A. Kinsella, Speaker

Orders of the Day

Funding for Treatment of Autism

Inquiry-Referred to Social Affairs, Science and Technology Committee

On the Order:

Resuming debate on the inquiry of the Honourable Senator Munson calling the attention of the Senate to the issue of funding for the treatment of autism.
- (Honourable Senator Johnson)

Hon. Wilfred P. Moore: Honourable senators, my colleague Senator Munson could not be here today. He is at his son's graduation.

Referred to Committee

Hon. Wilfred P. Moore: In the absence of Senator Munson, I move:

That the Inquiry on the issue of funding for the treatment of autism be referred to the Standing Senate Committee on Social Affairs, Science and Technology for study and report; and

That the committee submit its final report no later than November 30, 2006.

The Hon. the Speaker: Is it your pleasure, honourable senators, to adopt the motion?

Hon. Senators: Agreed.

Motion agreed to.

Things are really picking up on Parliament Hill, with significant developments on the autism front in both the House of Commons and the Senate!

Take ACTION!

Call to Contact MPs to Support Bill C-304 - National Strategy for the Treatment of Autism Act

Find your MP's contact info at this link:
www.parl.gc.ca/information/about/people/house/mpscur.asp?Language=E

Please consider sending a message to thank MP Andy Scott (Liberal MP, Fredericton, N for his motion in the House May 15th, 2006. (Mr. Scott attended the Autism Rally held April 24th in Ottawa)

Parliamentary Address:

House of Commons
Ottawa, Ontario K1A 0A6
Telephone: (613) 992-1067
Fax: (613) 996-9955
Email: Scott.A@parl.gc.ca

Bill C-304

First Session,
Thirty-ninth Parliament,
55 Elizabeth II, 2006
HOUSE OF COMMONS OF CANADA

BILL C-304

An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act

first reading, May 17, 2006
Mr. Murphy (Charlottetown)

SUMMARY

This enactment requires the Minister of Health to convene a conference of all provincial and territorial ministers of health for the purpose of working together to develop a national strategy for the treatment of autism. It also requires the Minister to table a report in both Houses of Parliament specifying a plan of action to implement this strategy.

The enactment also amends the Canada Health Act to ensure that the cost of Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for autistic persons is covered by the health care insurance plan of every province or territory.

BILL C-304

An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act

Her Majesty, by and with the advice and consent of the Senate and House of Commons of Canada, enacts as follows:

SHORT TITLE

1. This Act may be cited as the National Strategy for the Treatment of Autism Act.

NATIONAL CONFERENCE

2. The Minister of Health shall, before December 31, 2006, convene a conference of all provincial and territorial ministers responsible for health for the purpose of working together to develop a national strategy for the treatment of autism. The Minister shall, before December 31, 2007, table a report in both Houses of Parliament specifying a plan of action developed in collaboration with the provincial and territorial ministers for the purpose of implementing that strategy.

AMENDMENTS TO THE CANADA HEALTH ACT

3. Section 2 of the Canada Health Act is renumbered as subsection 2(1) and is amended by adding the following:
(2) For the purposes of this Act, services that are medically necessary or required under this Act include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) for persons suffering from Autism Spectrum Disorder.

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Shawn Murphy's email: Murphy.S@parl.gc.ca
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HANSARD * HOUSE OF COMMONS
Wednesday, May 17, 2006

Routine Proceedings

National Strategy for the Treatment of Autism Act

Hon. Shawn Murphy (Charlottetown, Lib.) moved for leave to introduce Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act.

He said: Mr. Speaker, I rise to introduce a bill that would provide much needed support for many Canadians and their families who are affected by autism spectrum disorder. This bill would see that two forms of very effective treatments, applied behavioural analysis and intensive behavioural intervention, be covered under the Canada Health
Act.

It would also compel the federal Minister of Health to work with his provincial counterparts in developing a national strategy for the treatment of autism. The bill would require that a first ministers conference would be held this year before December 31, 2006, and that a national strategic plan be developed and tabled in the House before December 31, 2007.

I hope my colleagues in the House will join me in supporting this very important issue.

(Motions deemed adopted, bill read the first time and printed)

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Senator Ione Christensen's email is: chrisi@sen.parl.gc.ca
______________________________________________

Debates of the Senate (Hansard)
1st Session, 39th Parliament,
Volume 143, Issue 15
Wednesday, May 17, 2006

Funding for Treatment of Autism
Inquiry-Debate Continued
On the Order:

Resuming debate on the inquiry of the Honourable Senator Munson calling the attention of the Senate to the issue of funding for the treatment of autism.-(Honourable Senator Di Nino)

Hon. Ione Christensen: Honourable senators, I wish to thank Senator Munson for raising the inquiry on autism. Incidence of ASD [Autism Spectrum Disorder], in all its many forms, is now prevalent in one out of every 106 children. In the 1970s it was rarely diagnosed. It is now 10 times what was experienced just 20 years ago.

Certainly, the challenges are many. Be it autism, FASD [Fetal Alcohol Syndrome Disorder], schizophrenia, MPS [Maroteaux-Lamy syndrome] or Down's syndrome, just to name a few, the children with these damaged brains and bodies are often referred to as "the angels among us." In the past, they were often not long with us, but their short lives always left a bright, shining light and they were never forgotten. Their intellect, their loving nature through adversity, their insight into what life is all about and their happiness with small things were gifts that helped others to grow. However, all of this came at a huge cost to the child, to the parent and to society.

With research and medical advances, these angels are living longer. As a result, the financial needs to help them to be productive members of society are much more than any family can realistically cope with, and the limited coverage under provincial health care programs is nowhere near enough.

In the United States, the federal funding has more than tripled in the past 10 years for autism; it is now over $100 million. However, by comparison, $500 million was spent on childhood cancer, which affects even fewer children.

There are programs that do work, but they require one-on-one therapy, which is hugely expensive and offers no ongoing medical coverage. Parents must literally mortgage their lives to provide for these needs.

With Maroteaux-Lamy syndrome, or MPS, the cost of replacement enzyme treatment is $200,000 a year, and that is not covered by any of our health care systems. MPS is an enzyme deficiency that is very rare; there are only 10 cases in Canada, but I personally know of two of them - one in the Yukon and one in Ontario.

The cost of FASD to Canadians is upwards of $344 million a year. The cost for each person affected with FASD is $1 million over their lifetime. There are 4,000 new cases of FASD every year in Canada. Can we really put off taking action?

I believe that Senator Munson will be asking the Standing Senate Committee on Social Affairs, Science and Technology to undertake to study the financial needs and how they can best be addressed. What better than a Senate committee? However, we should be looking at all afflictions that fall outside of our health care guidelines. There is a great need.

There should be a special health care fund established to deal with these very special, difficult and extremely expensive requirements. It could be of national scope, and available for provinces and territories to draw from.

Over and above the treatment expenses, research chairs should be established to deal with the prevention - as in the case of FASD - and the causes and the cures in the cases of ASD and MPS. With modern medicine, these children are becoming adults. With care and nurturing, they, for the most part, can be functional and productive in society.

It will be very costly, but without such assistance they will become non-functional adults and will be dealt with through institutions, both criminal and otherwise, that is also very costly, I would argue even more costly than helping in the first instance.

Governments of all stripes are not good at committing to long-term programs, but this is one area where funding must be ongoing to be of any help or assistance. We must find ways to accommodate the need. The burden on a parent to help such children is enormous. The responsibility to help these angels rests with all of society and the governments that society puts in place to represent them.

Hon. Madeleine Plamondon: Would the senator accept a question?

Senator Christensen: Yes.

Senator Plamondon: What does the honourable senator mean by "being productive in society"? I have the feeling that if we are to obtain funding, we must always include the buzzwords "productive in society."

Not every Canadian will be able to be productive and they will still need care. Could the honourable senator elaborate more on what she means by "productive"?

Senator Christensen: I thank the honourable senator for the question.

Without any assistance in providing for treatment and therapy, all of those children will grow up as a burden on society. With assistance and care, some of those children will be able to function well in society. For example, Fetal Alcohol Syndrome Disorder is preventable but, once afflicted, a child will be a burden on society and will need ongoing assistance for life. If the inquiry is referred to committee for further study, the area of funding for ongoing assistance will certainly be a focus. The honourable senator is right when she says that being a productive member of society is not the be-all and end-all. However, many people need continuing assistance and that must be built into the program as well.

On motion of Senator Di Nino, debate adjourned.

The newly-tabled motion in the House of Commons

House of Commons
Private Members' Notices of Motions

M-172 - May 15, 2006

Mr. Scott (Fredericton):

That, in the opinion of the House, the government should create a national strategy for autism spectrum disorder that would include: