[Andrew Kavchak]

Hi Folks,
Please check out the article about the Auton case and autism in Canada by John Ivison in today's National Post (November 10, 2004)!
Cheers!
Andrew

[Andrew Kavchak]

Hi Folks,
Well, things are on a roll in the Canadian Senate! Since the latest session of Parliament started, Senator Jim Munson has made two statements calling for a National Autism Strategy and Senator Donald Oliver similarly called attention to the challenge of autism. Please see below the statement that Senator Vivienne Poy made in the Senate on Wednesday, October 27, 2004. I believe the Senator is the Governor General's (Her Excellency Adrienne Clarkson) sister. Her email address is:
poyv@sen.parl.gc.ca
Let's keep up the submissions on autism! The Senator makes reference to a Senate committee. I believe the committee will be travelling in the coming months to hear submissions from Canadians. Our community shoudl consider making submissions and appearing as witnesses to describe our experiences (or lack thereof) with the health system in Canada.
Cheers!
Andrew Kavchak (Ottawa)

Autism Awareness Month

Hon. Vivienne Poy: Honourable senators, last week Senator Oliver brought it to our attention that October is Autism Awareness Month and referred to hopeful developments in science that are making treatment for autism possible. Those treatments, though, however effective, must be accessible and affordable. From letters I have received recently, this is not the case with autism or, for that matter, with other developmental disorders suffered by many children. The parents of these children are pleading with parliamentarians for our help.

Like Senator Munson, I am concerned that these treatments, particularly the intensive therapy that is required before the age of six, are not available to enough individuals. Those seeking help are forced to wade through a patchwork system, often being placed on long waiting lists, or going into debt, to pay for costly treatments themselves.

Children who suffer from autism and other developmental disabilities cannot wait for our help. If they are not treated at a very young age, society will pay for their support throughout their lives. As both Senators Oliver and Munson noted, the number of individuals who are diagnosed with autism is rising exponentially. We need a national autism strategy now.

Honourable senators, I have received many letters from constituents seeking help. One of them was from the public servant, the one Senator Munson mentioned in his statement, who spent his lunch hour marching on the Hill, calling for action on autism. He was there because he could see no other way to have an impact.

Some parents I know are fundraising for themselves; others are forming their own support networks, such as Giant Steps Toronto, which is part of a worldwide group of educational centres for children that aims to integrate autistic children into society.

I also know a woman whose own struggles to cope with her child's array of developmental disorders led her to found an organization called Spirit of Life. This organization reaches out to parents and provides networking and resources to those who feel isolated and alone.

These are brave and courageous parents doing their best in the face of very difficult circumstances.

It is important that the Standing Senate Committee on Social Affairs, Science and Technology, which is currently studying mental health and mental illness, look at the issues of autism and other developmental disorders and their treatment and that it make recommendations for action so that parents and their children do not have to cope alone.

[Andrew Kavchak]

Hi Folks!
Senator Jim Munson made a second statement on autism in the Senate on October 26, 2004. Senator Munson may be reached through his assistant Alexandre Asselin at:
ASSELA@SEN.PARL.GC.CA

Thank you to all who wrote to him!
Andrew Kavchak (Ottawa)

From the Senate Debates:

Need for National Autism Program

Hon. Jim Munson: Honourable senators, two weeks ago, in my reply to the Speech from the Throne, I emphasized a need for a national program to treat autism, not the patchwork of programs we see in some parts of the country.

Since I spoke, I have received dozens of e-mails from coast to coast, messages that are both heartwarming and heartbreaking. This is a country where it is alleged we have a universal medicare program. One of the notes from a parent of an autistic child reads as follows:

I am one of those parents who, for years, paid for my son's early intervention program out of my own pocket….I sold my house to pay for the program, my elderly parents gave up their retirement nest egg and I sacrificed the university education fund of my other son to pay for the program.

Eventually, the bank refused to loan me any more for my son's medically necessary treatment and today I am still heavily in debt as a result. However, my son made significant progress in this therapy program and it was well worth every penny.

Senators, I hope that when we echo the words of Canadians in this chamber that they are not empty words and someone is listening. My government, all provincial governments must do more. This is a crisis and if you read the statistics, it is only going to get worse.

Listen to another mother.

I am the mother of an autistic 3 year old child…

If my daughter had cancer she would be in hospital immediately and they would have doctors and specialists provided for her immediately. For us, we would have to wait at least 10 months to get her seen by a doctor and with this disability 10 months is too long.

Senators we are talking about Canada's children, children who without professional and financial help will never have a chance to participate in their communities.

…There must be a national will to help tens of thousands of Canadians.

In closing, one parent said, "I just pray that things will change for the better soon." For things to get better soon, provincial governments, working with the federal government, must fund more, not less, treatment for autistic children.

(1420)

The recommended treatment is intensive behavioural intervention. Provincial health care plans should be amended to include this medically necessary treatment for children with autism. Funding for this treatment should be available to all individuals with a diagnosis of autism, regardless of age and severity of affliction.

It has been said that these treatments are costly. Well, there should be no price tag on the caring of a child in this blessed and generous country called Canada.

[Andrew Kavchak]

Hi Folks,

Just one point I wanted to add about the autism petition. If you can, please sign the printed form that is posted on this website and get the minimum 25 signatures and send it in to your MP. This is crucial. The petition has just been certified by the Clerk of Petitions. Similarly, I have just been informed that there may be an "autism information session" for MPs on the Hill during the week of November 22. We will see if we can get all the MPs who receive the petition to join together and table them together on that day. Who knows? This may make quite a splash in the media. Similarly, once tabled, the government has 45 days to issue a response.

With respect to the electronic petition that Mr. Charles Matthews started up, it is not entirely clear to me yet whether the electronic version can be tabled. I have received some conflicting information on this and in one message I received today from an MP's office the receipt of electronic petitions is currently being "studied". Thus, the hard copy is better as that can definetely be tabled, but the electronic version is also helpful at this time as we will be able to claim during any media event or press conference that the electronic version already has XXXX signatures, etc… Thank you!

Cheers!
Andrew

[Andrew Kavchak]

Hi Folks,

Attention! Attention! With respect to the Autism Petition for federal action, it appears that there is a distinct possibility that the first batch of signed petitions which I gave to an MP two weeks ago has been going through the screening and review process and will probably be ready for tabling in the House of Commons in about two weeks or so. I am hoping for a media event to publicize the matter. One thing the journalists are likely to ask is "how many people have signed on?". It is very important that we try to get the figures as high as possible. Please forward your signed petitions to your MPs and provide the total signature figure to your FEAT BC petition contact Nancy Walton.

However, there is also another avenue to get the figures up and to help publicize the cause. Mr. Charles Matthews of Ottawa's "Disabled and Proud" organization created the electronic version of the petition which is at:

http://www.petitiononline.com/andap1/petition.html

It currently has over 700 signatures! Please add yours to the list and pass the link on to your friends across Canada so that we can get the figures up as much as possible!

Thank you all.

Andrew Kavchak
(The Parliament Hill protester)

[Andrew Kavchak]

Hi Folks,

In his "Reply to the Speech from the Throne", Senator Jim Munson yesterday made reference to our struggles to do what is best for our children suffering from autism.

He also issued a Press Release stating that "Autistic Children Deserve Better".

Please show your appreciation by sending his office a message of gratitude and support along with any suggestions on how they may further help us in the struggle for proper healthcare.

His office may be reached at:
(613) 947-2504 or by email at his assistant Alexandrew Asselin:
ASSELA@SEN.PARL.GC.CA

Thank you.
Andrew Kavchak
(The Parliament Hill protest guy in Ottawa)

Release

October 6, 2004
Hold for release 3:00 PM

STATEMENT BY SENATOR JIM MUNSON
Autistic Children Deserve Better

Senator Jim Munson calls on Prime Minister Paul Martin to work with the provinces to create a national autism program.

Senator Munson says that Prime Minister Paul Martin’s pledge to shorten waiting lists in five key areas should be expanded to include the early treatment of autism: “The fact is autism is a growing problem in Canada. It affects one of every 200 babies born each year. The numbers are growing and what we have to offer families is a patchwork of treatments, long waiting lists, and coverage that depends on where you live. Too many parents are left on their own to deal with the many needs of an autistic child. The resulting financial burden can be overwhelming.”

In his reply to the Speech from the Throne, Senator Munson says: “the issue is universality. The people affected are our most vulnerable citizens who are being denied treatment that is proven to work.” Senator Munson emphasizes the need for a national vision: “There must be a national will and with that a national autism program.”

– 30 –

Office of the Honourable Jim Munson: (613) 947-2504

Below are extracts from the speech:

I move, seconded by the Honourable Senator Maria Chaput, that the following address be presented to Her Excellency the Governor General of Canada:

To Her Excellency the Right Honourable Adrienne Clarkson, Chancellor and Principal Companion of the Order of Canada, Chancellor and Commander of the Order of Military Merit, Governor General and Commander-in-Chief of Canada.

May it please your Excellency:

We, Her Majesty’s most loyal and dutiful subjects, The Senate of Canada in Parliament assembled, beg leave to offer our humble thanks to Your Excellency for the gracious Speech which Your Excellency has addressed to both Houses of Parliament. …
…
It is a great honour for me to be asked to speak today. As Canada’s newest Senator, I am humbled. It has been less than a year that I joined you here in this Chamber. The past months have been a time of transition. A time for learning. I want to thank all my Honourable Colleagues for their graciousness and warmth. I thank you for your experience, knowledge, and years of dedicated service.

Introduction
It has been several months since we asked the people of Canada to choose their government.
…..

This Speech from the Throne outlines the direction we will be taking to achieve our goals of a better Canada for more Canadians. It outlines what we are going to do for health care, for children, for cities and communities, for the environment, for Aboriginal people, and for our foreign policy.

Health Care
I would like to applaud the Prime Minister and the first ministers for their deal. The goal was to ensure that our most precious social program be made sustainable for years to come. Universal, accessible health care is what Canadians want.

Open and flexible federalism is what Canadians want. Discussions about federalism, asymmetrical or other, are a debate of little interest for people on a waiting list for an MRI, a hip replacement, or cataract surgery.

The challenge is to make sure that this health deal delivers results. And I believe it is the role of the federal government to ensure that health care dollars are spent for national health care priorities. Like many Canadians, I still have concerns related to accountability. I strongly believe in national standards. Our existing health care system is a hungry beast with an insatiable appetite for money. But money isn’t all it needs. It needs to be retooled to meet the needs of an aging population. Our national health care system is now middle-aged.

It’s clear that it needs to be modernized to meet the demands of modern times.

We have experts here in this Chamber who can make our health care system better. Senators Kirby and Keon have put forward proposals to make our health care system work better by improving the funding formula for hospitals by basing it on services delivered. They propose that we review which health care professional delivers which service in which health care setting. Their road map for improving Medicare will help us get a bigger bang for our health care buck and I think we should pay attention to them.

I would also like to see us look at health care within the broader social context, to understand it as a barometer of what is working well in our society and what needs more attention.

The Prime Minister has said that our government will work to reduce waiting times for cancer treatment, coronary care, joint replacement, high-tech diagnostics and eye surgery. No one will dispute that Canadians deserve quicker service from their health care system. But I would like to add another item to this list – an item that is a health issue, but has slipped through the mesh of our social safety net. The issue is autism.

One father in Ottawa, a public servant, forgoes the usual lunch hour routine of sandwiches and errands and instead walks on Parliament Hill with a sign saying, “Kids with autism need health care not waiting lists”. The fact is, autism is a growing problem in Canada. It affects one of every 200 babies born each year. The numbers are growing and what we have to offer families is a patchwork of treatments, long waiting lists, and coverage that depends on where you live.

Treatment for autism is similar to treatment for people with brain injuries. For kids with autism, the treatment is intensive and must happen before they are six. It’s been proven to be effective, but it is also very expensive. In fact, for parents with kids with autism, the treatment is so expensive that it is beyond the reach of most.

Is this the face of Canada’s universal health care system? Senators, I’m afraid it is. And yet the cost of not treating autism is much higher. Children who don’t receive treatment very often grow up to become wholly dependent on the state for support, and this support is estimated at $2 million over the lifetime of the individual. So you see, apart from being immoral, denying coverage is a false economy. The issue is universality. And the people affected are our most vulnerable citizens who are being denied treatment that is proven to work.

We need a national vision. There must be a national will and with that a national autism program.

[Andrew Kavchak]

Hi Folks,

Thank you so much for your interest and work relating to the Petition drive. Just to clarify a few points so there is no misunderstanding, a petition requires a minimum of 25 signatures to be tabled. The signatures must be original and accompanied by the person's full address. Please do not make any erasures or crossing things out marks as this will result in the petition being voided and not qualify for tabling. Also, only Canadians can sign. MP signatures do not count.
Although 25 signatures are the required minimum, no MP is actually required to table it. However, once tabled, the government is required to respond within 45 days. Thus, this keeps the matter on the agenda. The trick is to find an MP who is willing to table it. The first MP I asked about this was an MP that I met one day while protesting on the Hill. He has already seen the wording and agreed to table it. I have enough signatures already and will give him the petition later this week. Several other families will be joining me on the Hill to protest today and tomorrow as Parliament starts up again with a new session.
Again, the petition has to be in the right format. The wording at the heading of it is in the right format. There should be lines across the page for each signature. The second pages and following need at a minimum to make a reference to the petition topic, but to avoid confusion and the risk of rejection, I would simply use the first page of the petition over and over again so that the subject is very clear and there is no risk that the Speaker or the Clerk of the House may reject it and prevent it from being tabled because of a mere technical format problem.
By the way, an Ontario website posted an article about the petition and the petition itself (and a picture of my protest) at the following website:
http://www.oacrs.com/News/2004/October/Oct01.htm
The petition can be downloaded and printed from that site as well.
As you know, in Nova Scotia last week a petition calling on the provincial government to provide ABA therapy was tabled in the provincial legislature with 12,000 signatures. We wish the families in Nova Scotia all the best!
Thank you BC for embracing this petition idea so much (I have received a number of wonderful emails) and for what you are doing to get it signed up and to help lobby our MPs and government.
Cheers!
Your Ottawa colleague,
Andrew

[Andrew Kavchak]

Hi Folks,
Just an update from Ottawa…
Please check out the article on this webpage about the autism petition for Parliament:
http://www.oacrs.com/
Also, please see below an email I received from Nova Scotia. It turns out that today a petition with 12,000 signatures was tabled in the Nova Scotia legislatures demanding ABA treatment for autism. FEAT NS reps also met with the provincial healt minister.
Cheers!
Andrew

Subject: ABA in Nova Scotia
Hi Andrew –

On a recent trip to Ottawa my husband ran into you on your lunch-hour lobby. He brought me home a few articles you had given him and I was so pleased!

Our son is 4 and has Aspergers. He is still on the waiting list for an "official diagnosis" but we went ahead privately so that we would know what we were dealing with – I'm glad we did. Unfortunately – there is NO funding for ABA here (I noticed your post on the FEAT BC website about the 20 hours in PEI – too bad they didn't mention that there is NONE for my little one in the province just next door!).

I am on my way to Parliment house tomorrow to watch the tabling of a petition for publically funded ABA for these kids. Too bad it is the parents of these kids who have the least amount of time (and money) who seem to be doing all the fighting…

Anyway – I just wanted to introduce myself – and thank you for doing more than your part!

Carla Grant
in Halifax
carlagrant@canada.com

[Andrew Kavchak]

Hi Folks,
Well, if there was ever any doubt about the importance of the Auton case and the impact it will have on families across this country, please see the article in today's paper from the other coast.
Andrew (Ottawa)

Families piling up debt to help autistic children; Treatment costs 'catastrophic' and province income-tests families before aid offered: Autism Society leader.
The Guardian(Charlottetown)
Sep 28, 2004
Page: A3
Byline: Stewart, Dave
The president of the P.E.I. Autism Society says families in the province are going into debt trying to pay for their child's treatment.
Vic Douse was the keynote speaker at Monday's Charlottetown Rotary Club luncheon.
Douse said many have re-mortgaged their homes to pay for the "catastrophic costs (of medication), including myself.''
Douse and his wife have two daughters, Ashley and Jewel. Jewel, 11, was diagnosed with autism and a seizure disorder at the age of five, a diagnosis Douse says changed the course of the family's lives.
In hopes of achieving the best possible outcome for his daughter, Douse researched medical and educational therapies.
He said Jewel has been receiving Applied Behaviour Analysis (ABA) therapy since 1998. She is being treated by medical specialists from the Pfeiffer Treatment Centre in Chicago and has made tremendous gains.
While once rare, autism now affects one in 200 children. During the early 1990s, it was one in 10,000. On P.E.I. the number is even more sobering, one in 133 births.
Douse said currently ABA is the only recognized treatment that has been scientifically proven to work. Under the treatment, a child requires an average of 40 hours a week of therapy.
"The province funds 20 hours, maximum,'' Douse said. "Studies have shown that 48 per cent of children with autism receiving this level of intervention from age three to six will attend school indistinctable from their peers.''
However, he said the cost to families for ABA treatment is $60,000 per year.
"These costs are catastrophic to most families on P.E.I. and unattainable. This treatment is not covered under Medicare . . . but under the social programs such as our provincial disability support program.''
Under the provincial program, families are income-tested before they can receive a penny.
"Before we receive any funding we must turn over our federal income tax records. Personal tax information should not be used as a measure of how much or little health-care moneys sick children will be receiving. Under the disability support program, children with autism are not entitled to health care.
"It is needs-based and government employees, not your doctor, decide your child's needs. The disability support program ended universal access to health in this province.''
He said average-income families see their benefits clawed back by 50 per cent of the cost of their child's medically necessary ABA treatment.
Families feel it is unjust to income-test the families of children who have autism while children of other diseases are given full support under Medicare.
The Supreme Court of Canada will rule next month whether children with autism are being discriminated by provincial governments not funding their health care.
Douse said the high court's ruling will determine "if our children are equal members of Canadian society."
Carolyn Bateman, chair of the Stars for Life Foundation, also addressed Rotary. Bateman helped create the Autism Society of P.E.I. Her son, Adam, has autism.
The foundation is an organization dedicated to the fostering of productive, meaningful lives for people with autism.
Bateman said they need the support of government, education, communities and the public to break down barriers blocking the development of fulfilling lives as well as trying to keep adults with autism out of institutions.

[Andrew Kavchak]

Hi Folks,

For those of you who are interested, below is the text of a petition that I propose to start asking people to sign during my Parliament Hill daily protests.

As was the case with the Health Accord conference, I hope that some parents will be able to join me on the Hill next week when the House of Commons resumes (Monday Oct. 4 & Tuesday Oct. 5 from 12 noon to 1pm). I hope that by next week we should have enough signatures on the petition so that we may present it to an M.P. for tabling in the House of Commons. Formal petitions that are tabled require the government to respond within 45 days. I know of one M.P. who has indicated a willingness to table the petition and who may come out and talk with us during the protest next week (if his schedule during the anticipated chaos permits).

For those who agree with the contents of the petition and would like to contribute to the petition campaign, feel free to copy the text and circulate it to your friends and persons you may think are interested. Once you have a minimum of 25 signatures please send it in to your M.P.

Thank you.
Andrew

PETITION
TO THE HOUSE OF COMMONS IN PARLIAMENT ASSEMBLED

We, the undersigned citizens of Canada, draw the attention of the House to the following:

Whereas children suffering from an Autism Spectrum Disorder (ASD) are among the weakest and most vulnerable sector of Canadian society;

and whereas, in Canada the rate of children being diagnosed with ASD is high and increasing at an alarming rate (currently approximately 1 child in 195);

and whereas, until the cause and cure of autism are found, children suffering from autism can benefit from the provision of Intensive Behavioural Intervention (IBI) therapy treatment based on the principles of Applied Behaviour Analysis (ABA);

and whereas, for a variety of reasons including lack of assigned resources, unconscionable waiting lists, and delegation to Ministries with little or no expertise, the provision of IBI/ABA therapy treatment to children with
autism is woefully inadequate;

Therefore, your petitioners call upon Parliament

1) to amend the Canada Health Act and corresponding Regulations to include IBI/ABA therapy for children with autism as a medically necessary treatment and require that all Provinces provide or fund this essential treatment for autism; and

2) contribute to the creation of academic chairs at a university in each province to teach IBI/ABA treatment at the undergraduate and doctoral level so that Canadians professionals will no longer be forced to leave the
country to receive academic training in this field and so that Canada will be able to develop the capacity to provide every Canadian with autism with the best IBI/ABA treatment available.

Signature
(Sign your own name. Do not Print)
Addresses
(Give your full home address including city and province.)
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
13.
14.
15.

Note: Minimum 25 signatures required. Signatures and addresses must be inlcuded and must be handwritten and originals – no erasures. The subject matter must be shown on each attached sheet of signatures and addresses.
Return (postage free) to: Your M.P., House of Commons, Parliament Buildings, Ottawa ON K1A 0A6.

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