[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.

 

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—-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

 

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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]

Our dreams for a succesul recovery have not materialized.

The news reports are now indicating that James Delorey has passed away.

I think the sadness that our whole community feels is beyond description. I know I have not shed this many tears in a long time. We all know that it could have been anyone of our kids and we all know the dreadful fear when our kids go missing, even for just a few moments.

The boy's picture is so sweet, and makes me think of my own son who is a year older with different colour hair. If I lived in Nova Scotia I would have rushed to the scene to help out with the search and wish I could have.

I will never forget the name James Delorey or the beautiful face in the picture. I wish so much I could have given him a hug.

The media coverage has raised for awareness about autism than any "bill" in Parliament ever could and I am grateful that the CBC and other outlets made the story of his having gone missing the lead item on the National news on Sunday.

We'll never forget you James Delorey. You touched our hearts and you are in our prayers. We will miss you greatly.

Andrew Kavchak
(Ottawa)

[Luke’s mama]

Seven-year-old James Delorey still missing

The Canadian Press

SOUTH BAR, N.S. — A search is underway today for an autistic boy who wandered away from his home in rural Cape Breton without a winter coat, as an early winter storm hit the island.
Seven-year-old James Delorey was apparently following the family’s dog when he walked into the woods near South Bar at around 2 p.m. on Saturday.
Police say the brown-haired boy, who weighs about 60 pounds, was wearing dark jeans, a blue plaid shirt and a grey-coloured vest.
The temperature was cold early Sunday and winds were gusting and wet snow falling as the storm made its way eastwards to Newfoundland.
Several hours after the search started on Saturday, military officials in Halifax dispatched a Cormorant helicopter from Canadian Forces Base Greenwood, while boats searched the east side of Sydney harbour as well.
However, Staff Sgt. Ken O’Neill, a spokesman for Cape Breton Regional Police, said at noon on Sunday that there was “no change” in the status of the search about 10 kilometres north of Sydney.

[Andrew Kavchak]

Hi Folks,

Here is an update with even more curious developments on Parliament Hill relating to the House of Commons Standing Committee on Health and a new Subcommittee on Neurological Disease.

I contacted the Clerk of the Health Committee as well as one of their Library of Parliament researchers to find out what is going on.

It turns out that the MPs on the Health Committee have until April 27 to study and report back to the House of Commons on Bill S-210.

The House will likely rise for the holidays next week, which means they won't get down to business until they return in January. They will probably make some decisions early in the new year about the possibility of hearing witnesses, etc.

For those of you who are interested in making a submission, all you have to do is send an email to the Clerk of the committee, Christine David, at:

HESA@parl.gc.ca.

Below is a list of the members of the Committee. You may wish to also send the email to them as well.

Further below is the text of Senator Munson's Bill S-210. It is a fairly short Bill which would basically declare one day of the year to be an autism awareness day.

However, the "whereas" clauses up front are what cause several parties and politicians to get uncomfortable. Passing the Bill as is would essentially be an admission in law by the federal government that there is a autism problem going on that it has not dealt with particularly well.

Conservative politicians like Mike Lake have already stated that the "whereas" clauses need to be changed. Similarly, the Bloc has indicated that the "whereas" clauses intrude on matters of provincial jurisdiction. They will seek to have them amended.

Please let the members of the Committee know what your thoughts are on the "whereas" clauses. I would like to see some amendments myself. Whereas the first clause suggests that the prevalence rate is 1 in 165 that figure has been rendered obsolete by the two Centres for Disease Control (CDC) studies in the U.S. which subsequently put the prevalence rate at 1 in 150 and then more recently 1 in 99.

Now here is some more interesting news…an MP from Etobicoke by the name of Kirsty Duncan is a member of the Health Committee. Earlier this year she convinced her fellow Committee members to create a "Subcommittee on Neurological Disease".

There is no information about the Subcommittee on the Parliament website (http://www.parl.gc.ca), however, it appears that they will be having some meetings in the new year with a view to studying a number of neurological diseases.

Apparently they may hold several study sessions with policy makers, stakeholders and researchers with a view to discussing the treatment of neurological diseases in order to raise awareness of what is going on outside of Canada and creating some sort of impetus towards the development of a "brain strategy" or something here in Canada.

I asked the researcher for the Subcommittee whether the Subcommittee would be looking into autism treatment. Her response consisted of nervous giggling and a statement that more information would likely be available in the new year. I took the response to suggest that autism may be on the radar screen.

Thus, not only does the Standing Committee on Health's study of Bill S-210 provide our community with an opportunity to promote our interests and get some attention (or at least plant some seeds for future growth), but the creation of this Subcommittee on Neurological Disease is another potential forum for our community to be heard and have an impact.

Generally speaking, little will get done in the House without a positive recommendation from a Standing Committee. A positive report with recommendations that are consistent or even better than those from the Senate Committee (the "Pay Now or Pay Later" report) could help our community's lobbying efforts in the short and long run.

Now we have autism on the agenda of the Standing Health Committee (for the first time) and a more specific Subcommittee. Please let the Clerk know what you think the Subcommittee should be studying when it comes to autism, who they should hear as witnesses, and what kind of policies you think they should recommend to the government.

Thank you.

Andrew Kavchak
(Ottawa)
_________________________
House of Commons Standing Committee on Health
CHAIR
Joy Smith

VICE-CHAIRS
Joyce Murray
Judy Wasylycia-Leis

MEMBERS
Carolyn Bennett
Patrick Brown
Colin Carrie
Patricia Davidson
Nicolas Dufour
Kirsty Duncan
Luc Malo
Cathy McLeod
Tim Uppal

CLERK OF THE COMMITTEE
Christine Holke David
_____________________________

BILL S-210

An Act respecting World Autism Awareness Day

Whereas autism spectrum disorders affect at least 1 in 165 families in Canada;

Whereas Canada has a health care system and social safety net to prevent illness and serve citizens;

Whereas the number of Canadians diagnosed with autism spectrum disorders has grown by 150% in the last six years;

Whereas Canadian families affected by autism spectrum disorders have unequal access to services across the country;

Whereas worldwide the number of diagnoses of autism spectrum disorders is growing;

Whereas autism affects more children worldwide than pediatric cancer, diabetes and AIDS combined;

Whereas a greater awareness of the importance of early diagnosis and treatment for people with autism is required to engage more Canadians in helping their fellow citizens;

Whereas early intervention in the treatment of autism spectrum disorders can have promising results and help people engage with and contribute to society;

Whereas there is no known cause or cure for autism spectrum disorders;

Whereas Canada has no national strategy to address autism spectrum disorders;

Whereas 192 United Nations representatives agreed that World Autism Awareness Day would draw the attention of people across the globe to this neurological disorder that is affecting an increasing number of families;

Whereas in 2007 the United Nations General Assembly designated April 2, from 2008 on, as World Autism Awareness Day;

Whereas Canada is a signatory to the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities, which maintain that children with disabilities should enjoy a full and decent life in conditions that ensure dignity, promote self-reliance and facilitate their active participation in the community, while also enjoying all human rights and fundamental freedoms on an equal basis with other children;

And whereas Canada is a member of the United Nations and supports the work of this vital international organization;

Now, therefore, 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 World Autism Awareness Day Act.

WORLD AUTISM AWARENESS DAY
2. Throughout Canada, in each and every year, the second day of April shall be known as "World Autism Awareness Day".
______________________________

[Andrew Kavchak]

Hi Folks,

This is really interesting. To my knowledge, this is the first time that the word "autism" is going to hit the agenda of the House of Commons Standing Committee on Health. Is this a big opportunity? You bet!

No Bill becomes law without going through the standard procedure that involves three readings in the House of Commons. Debate usually occurs at second reading with MPs from each party giving their "lines". Then there is a vote on whether to refer it to the "committee stage" after second reading. If the vote is "no", then the Bill dies. However, a positive vote ensures the continued life of the Bill.

It looks like Senator Munson's Bill on Autism Awareness got past Second Reading last week and has been referred to the Standing Committee on Health. The Committee will now examine the Bill, and may possibly hear evidence from witnesses and do a clause by clause review. The Committee will then issue some sort of report to the House, which may include recommendations for amendments. If the House is still in session (no elections now please until this matter is dealt with!!!) the House will have a debate and vote at Third Reading. If it passes, then it is normally off to the other Parliamentary body (usually the Senate). However, this Bill originated in the Senate and so it would be off to the Governor General for Royal Assent and coming into force.

Thus, we are at a truly critical stage that offers an incredible opportunity. Just as with the Senate Committee hearings on Funding for Autism Treatment a few years ago, this committee stage offers an opportunity for the whole autism community to contact the Chairperson and members of the committee (don't forge the Clerk of the Committee) to tell them what you think of the Bill. It is critical that our messages are heard loud and clear and repeatedly. It is very important that they get volumes of consistent messages and requests for action.

Here are some ideas:

1) The Bill needs to be passed with amendments which would involve conseequential amendments to the Canada Health Act which would make autism treatment part of Medicare.

2) Same as above.

3) Do not remove the "whereas" clauses in the Bill which tell the story like it is. They are even soft. The prevalence rate is no longer 1 in 165 but 1 in 99 (regardless of what Mike "I don't believe that!" Lake says).

4) Autism awareness is pathetic baby stuff. We need a hell of a lot more than awareness. We need action. We need Canada to get a grip on the 21rst century. Where is that National Autism Strategy that provides for IBI/ABA healthcare in Medicare???

As you know, Shawn Murphy's National Autism Strategy Bill was debated in the House of Commons several years ago and never got past second reading. Senator Munson's Bill has achieved this milestone. This is just the beginning of a great opportunity for our community.

Please, if you have any energy left from the years in the struggle, please look up information on the Parliament of Canada website at http://www.parl.gc.ca about the Standing Committee on Health. Please write an email. Send it to all the members, the Chair, and the Clerk and your own MP, and the Leaders of each party. Let them know where you stand. Print off the email and mail it in letter format by snail mail (letters to MPs are free postage). Ask to be added to a mailing list for updated information. Make a recommendation on who they should hear from the autism community as witnesses. Don't let the opponents of autism treatment in Medicare dominate the debate. Take you kick at the can! Please don't miss this historic opportunity!

Thank you!
Andrew Kavchak
(Ottawa)

________________
Monday, November 23, 2009
House of Commons Hansard

Private Members' Business

Act Respecting World Autism Awareness Day

The House resumed from October 9 consideration of the motion that Bill S-210, An Act respecting World Autism Awareness Day be read the second time and referred to a committee.

Mr. Luc Malo (Verchères—Les Patriotes, BQ):
Mr. Speaker, we are resuming the debate at second reading of Bill S-210, the sole purpose of which is to institute World Autism Awareness Day.

On reading the bill, which contains only one clause and several “whereas” paragraphs, it is clear that it was written by a Canadian. It is clear to me, as a Quebecker, that some of these paragraphs concern elements that fall under the jurisdiction of Quebec and the provinces.

I will discuss this with my colleagues when this bill goes to the Standing Committee on Health, of which I am a member. Many of the matters that come before this particular committee for study fall under the jurisdiction of Quebec and the provinces. Canadians represented by the Conservative Party, the Liberal Party and the New Democratic Party cannot seem to distinguish between matters that the federal government is responsible for and those that legislative assemblies in Quebec and the provinces are responsible for.

As Quebeckers, Bloc Québécois members feel it is important to remind people about each level of government's responsibilities. For example, in the context of the current study on human resources in health care, it is clear that training, professional associations and deployment of resources in hospitals and social services centres fall exclusively within the Government of Quebec's jurisdiction. That being said, I will address the problem “whereas” statements in committee.

I highly doubt that any member of the House would be against instituting World Autism Awareness Day. As we all know, any disorder can deeply affect those who have it and their family members. It is therefore important to give people regular reminders so that they can become more aware of the issue. We should also take time to recognize the health professionals and researchers who work to minimize suffering and find long-term solutions.

I would now like to talk about autism to begin building awareness among those listening and members of the House who may or may not be familiar with the disorder.

The information I will share was taken from the Internet. The website of the Fédération québécoise de l'autisme et des autres troubles envahissants du développement says that autistic disorder, better known as autism or Kanner's autism, is one of five pervasive developmental disorders. The other four developmental disorders are: childhood disintegrative disorder, Rett syndrome, pervasive development disorder not otherwise specified or atypical autism, and Asperger's syndrome.

I should point out that autistic disorder, pervasive development disorder not otherwise specified and Asperger's syndrome are the three most common types of pervasive developmental disorders.

According to this site, there are three categories of symptoms commonly seen with people who have pervasive developmental disorders: difficulties with verbal and non-verbal communication; difficulties with social interaction; and restricted interests and/or repetitive behaviours.

Here are some quick facts about autistic disorders: they affect 4.3 boys for every 1 girl; they lead to different developments among children of the same age; individuals have difficulties maintaining eye contact; they cause delayed, non-existent or abnormal language development; they cause individuals to have repetitive and limited play; there is abnormal posture, walk or movement; and, 10 out of every 10,000 people have a PDD, according to a Fombonne study conducted in 2003.

Autistic disorder is one of the most common types of PDD, which refers to pervasive developmental disorder. I remind members that PDD affects four or five boys for every one girl, and is defined as a neurological disorder characterized by a delay in the overall development of an individual's basic functions.

Mutism is present in nearly half of all cases of autism. Non-verbal autistics have major problems with comprehension, mimicry and gestures. Impaired imagination can be manifested by a lack of symbolic games and stories invented with toys, or by difficulties imitating the actions of others. A number of autistic people show weaknesses in terms of motor coordination. Many also have difficulties with fine and gross motor skills. Autism can be found in individuals with varying levels of intelligence. However, the majority of people with autism seem to have lower than average intellectual performance, and present adaptive behaviour deficits, so in this respect, they are similar to people who have moderate or severe intellectual disabilities. Because of their particular characteristics, many people with autism also have behavioural problems.

A diagnosis of autism implies that the deficits have appeared before the age of three, that they have become a part of the individual's functioning, and that they are nearly constantly present.

The Autism Society Canada website also describes the general characteristics, and I would like to read them now.

Children and adults with autism spectrum disorders, or ASDs, have challenges with the following: social interactions; verbal and non-verbal communication; the ability to learn (in the usual settings); repetitive behaviours; unusual or severely limited activities and interests.

They usually find it hard to communicate with others in a typical way and have difficulty understanding social conventions. As a result, individuals with autism may respond in unusual ways to everyday situations and changing environments.

Autism varies tremendously in severity. Individuals with severe autism conditions may have … symptoms of extremely repetitive and unusual behaviours. This can include … self-injury … and aggression…. Without appropriate intensive intervention, these symptoms may be very persistent and difficult to change. Living or working with a person with severe autism can be very challenging, requiring tremendous patience and understanding of the condition. In its mildest form, however, autism is more like a personality difference caused by difficulties in understanding social conventions.

There are also a number of related disorders.

Many individuals with autism have other health problems, for example: neurological disorders including epilepsy; gastro-intestinal problems, sometimes severe; compromised immune systems; fine and gross motor deficits; and anxiety and depression.

That information can all be found on the Autism Society Canada website.

I also wanted to talk about the impact it has on the family, but since I am out of time, I will have to leave it at that.

Mr. Glenn Thibeault (Sudbury, NDP):
Mr. Speaker, I am very pleased to stand in the House today to voice my wholehearted support, as well as that of my caucus, for Bill S-210, An Act respecting World Autism Awareness Day. If passed, this bill would declare April 2 world autism awareness day.

Prior to donning a political hat, for 10 years on the west coast and of course in my great riding of Sudbury, Ontario, I was a front-line worker supporting individuals with autism and their families.

Let us first look at why it is important to have a world autism awareness day. First and foremost, what is autism? Believe it or not, there are still many people who do not understand this neurological condition or its potential impacts on behaviour.

The term autism is used quite generally to describe a wide spectrum of symptoms. Since children's severity of symptoms can vary so widely, professionals have been using the term autism spectrum disorder, or ASD, to emphasize this variance.

Autism occurs four times more frequently in boys than in girls. Autism occurs in all countries and within all socio-economic classes. There is no cure for autism, so treatment may reduce a person's symptoms, but he or she will still suffer from autism.

More often than not, children with autism exhibit unconventional reactions to sensory stimulation. Some children show a hypersensitivity to stimuli while others display a hyposensitivity to stimuli.

A great example of that was found in one individual I was supporting. That individual had a very difficult time going to a specific pool and, as support staff, we could not figure out why this individual had such difficulty going to that pool. After numerous attempts, we figured out it was the glare from the lights on the pool that made it difficult for the person to go to that particular pool. We moved to a different location and that person was then able to swim, once again being integrated into the community.

Another fact about autism that many do not know is that a large number of friends and neighbours are affected by it. According to some reports, autism affects more children worldwide than cancer, diabetes and AIDS combined. In fact, one in two hundred families in Canada is living with autism. Those families and others around the world need the government to help. They need all of us to help.

Unfortunately, because of our society's misunderstandings and lack of knowledge of what autism is and how it can affect people, families and children with autism can often feel isolated from their friends, classmates, neighbours, communities and, of course, the world around them.

Many different therapies are available, but waiting lists are long and many therapies are not covered by our health care system. It is not easy, but many individuals and groups across Canada and in my riding of Sudbury have worked tirelessly to raise awareness about autism.

The Sudbury and district chapter of Autism Ontario is one of them, and I would like to congratulate Mr. Rick Grylls, the former president of CAW Mine Mill Local 598, who took on this cause once he retired. He has been working tirelessly on its behalf. This group was re-established over two years ago by a small group of dedicated volunteers.

The group holds workshops throughout the year, complete with guest speakers, all in an effort to educate members of the Sudbury community about autism. Some of the issues the Sudbury chapter has raised include positive behaviour interventions, sensory issues, educational advocacy and how to build friendships for individuals with autism.

I applaud the Sudbury and district chapter of Autism Ontario and, in particular, Heather McFarlane, president of the Sudbury and district chapter of Autism Ontario for her continued dedication and hard work and, of course, as mentioned earlier, my friend Rick Grylls, who has been a tireless advocate for this cause that is as close to his heart as it is to mine.

Autism Ontario was also fortunate enough to pair up with one of Sudbury's finest country singers, Larry Berrio, in May of this year for a concert at the Fraser Auditorium to promote autism awareness. Larry generously gave some of his good fortune back to the local community. His wife, a child psychologist, has been helping Sudbury families deal with autism for years. Mr. Berrio has said there is a lack of autism awareness in the area.

Another huge help with this concert was Brenda Ranger, who is with Canadian Injury Management Services. She and others have been huge allies of this local awareness campaign.

Another important local ally of autism awareness is the movement right now by the Sudbury Catholic District School Board. In October of this year, the school board partnered with Autism Ontario's Sudbury and district chapters to share office space within the St. Benedict Catholic Secondary School. With this space, Autism Ontario will be able to hold weekly office hours and to meet with members of our community, school staff, and individuals and families on the autism spectrum disorder to provide support and share resources.

I would be remiss not to thank Yolanda Thibeault, my wife, for her countless hours of work at the Catholic school board on this file. I am very proud of my wife's tireless efforts as the coordinator at the Catholic school board providing support to teachers, teachers' aides, and the families and students dealing with autism. This will also get me in her good books.

While we do not know very much about autism, we do know that the earlier the treatment, the more successful it tends to be. That is why I introduced Bill C-360, An Act to amend the Canada Health Act (Autism Spectrum Disorder). This act will actually open up the health act to look at some of the treatments we can provide to children who are diagnosed with autism at the early stage.

When people with autism do not receive treatment in a timely fashion, it means they are denied the tools they need to succeed and to contribute to the community.

IBI or ABA treatment can, in some cases, cost up to $65,000 a year. Each province has a different approach to funding treatment, and far too many families have to remortgage their homes, find a second job or make other sacrifices to ensure that their children receive the treatment they need. This is shameful.

I think the federal government and all parliamentarians need to take the lead and adopt a national strategy, or at least look at creating a national strategy on this file.

The cost for society also increases when treatment is lacking. I believe a Senate report called, “Pay Now or Pay Later: Autism Families in Crisis”, outlined this issue.

Canada needs treatment, interventions and services for both children and adults with autism. The title of the report, “Pay Now or Pay Later: Autism Families in Crisis”, came from a man from New Brunswick. He said, “Look, we either have to pay now or pay later.” I think that sums it up.

Would it not be great if Canada could do as much as our neighbour the United States is doing to help our own citizens with autism? Let us recognize that autism is serious and affects a growing number of Canadian families. Let us declare April 2 World Autism Awareness Day.

It is great to be able to speak to this issue. I look forward to celebrating April as World Autism Awareness Day.

Ms. Kirsty Duncan (Etobicoke North, Lib.):
Mr. Speaker, my adopted kids were born healthy, but early in their lives their families noticed that their personalities were different from those of other babies of the same age. They hit milestones later and they increasingly showed little awareness of the outside world. Their words became fewer and they banged or chewed their toys, rather than playing with them. Tantrums were common, and others were quick to judge them when, for example, the child flapped his or her arms or shoved a nearby adult who had ventured too near. Even birthday parties or grocery shopping could be distorted by outbursts of anger and frustration.

Eventually the parents received the diagnosis of autism spectrum disorder, which is often made harder by a lack of understanding of those around them.

Most parents are concerned with whether their children will be engineers, lawyers or teachers, and whether their children will find happiness and marry. My adopted kids' parents faced the very real questions of whether their children would lead independent lives or not, and who would look after them when they, the parents, were no longer around.

Autism spectrum disorder, or ASD, is a neurological condition that causes a range of developmental disabilities. Some people can function well, while others are locked in a world of their own.

Today ASD occurs in 1 in 165 children, representing an increase of 150% in the last six years, and there is no explanation for the dramatic increase. Worldwide more children are affected by autism than AIDS, diabetes and pediatric cancer. In Canada a total of 48,000 children and 144,000 adults have some form of ASD.

A child who shows a number of the following characteristics and behaviours would likely be diagnosed with autism: if he or she shows no interest in other people; does not know how to play with or talk to people; develops language and speech skills slowly, or not at all; can only initiate and maintain conversations with difficulty; and repeats ritualistic actions, such as rocking, spinning or staring.

A person with a mild case could go for years and may only be detected when he or she goes through a crisis that brings them into contact with professionals who are able to recognize the disorder.

There is no known cause, but research is focused on differences in brain function, environmental factors, genetics, immune responses and viral infections.

No single test will confirm that someone has ASD. Some people with mild forms of autism may never need treatment, as they may function well and even excel. However, those with severe forms of the disorder cannot function and may benefit from active therapy.

There are several ways that people with autism are treated. Applied behavioural analysis and intensive behavioural intervention are designed to actively engage the children with behavioural, communication, learning and socialization problems. Therapy can be extremely expensive, as it may involve one-on-one teaching for up to 40 hours per week, with costs ranging from $30,000 to $80,000 a year. Other therapy may include counselling, development of motor and language skills, diet and medication and physiotherapy.

It takes hard work, patience and sheer determination to help navigate the system and allow a child to emerge from the bonds of autism. The physical and psychological strain on a family can be overwhelming, and the isolation profound. I am therefore honoured to rise in the House to speak in support of Bill S-210, An Act respecting World Autism Awareness Day.

I would first like to thank the sponsor of the bill, Senator Munson, as well as my many colleagues in the House who have been supporting and advancing this cause. I also thank Senator Eggleton, who was the chair of the standing Senate committee that provided an extensive report on funding for autism, entitled “Pay now or Pay Later”.

Bill S-210 calls for Canada to join with member states of the United Nations to focus the world's attention on autism each April 2.

World Autism Awareness Day shines a bright light on autism as a growing global health crisis, and it is one of only three disease-specific United Nations days. It reflects the UN's deep concern about the prevalence and high rate of autism in children in all regions of the world, and the consequent development challenges for long-term health care, education, training and intervention programs, as well as its tremendous impact on children, their families, communities and societies.

This day also acknowledges the extraordinary talents of people living with autism, as well as their ongoing struggles and those of their caregivers, families and friends.

This bill will not change the reality of families affected by autism, people such as Jacob, Dee and Mary in my community. Jacob is a beautiful little boy with long eyelashes, who loves technology and is an accomplished photographer. His prizewinning picture of owls is front and centre on my desk at work. His mother, Dee, left her job to focus full-time on Jacob. She and Aunt Mary, an 82-year-old who is currently recovering from heart surgery, are his greatest advocates, but they still have to fight every day to get treatments and to make the sacrifices necessary to pay for those treatments.

This bill will increase Canadians' opportunities to learn about autism and to recognize that in their communities there are families living with ASD, people like our Jacob, who is a superstar.

Last year the United Nations hosted a rock concert by Rudely Interrupted, whose members have various disabilities, including ASD. The words of lead singer Rory Burnside were especially inspiring:

My advice to kids who have some form of disability is: don’t let it stop you. Use it as your strength; don’t use it as your weakness. One red light can lead to a whole bunch of green lights, with a few orange lights thrown in. And the red lights are just a bit of a test.

I have seen first-hand what caring people who work tirelessly can achieve. We must change the future for all those who struggle with ASD. That means each of us must fight hard for every Jacob in our community, and when roadblocks are put in front of families, we must work all the harder. We must fund research into the causes, prevention, treatment and cure for autism and raise public awareness about autism and its effects on individuals, families and societies.

In 2006, the United States' Combating Autism Act authorized nearly $1 billion in expenditures over five years to help families with autism. We must bring hope to all of those who deal with the hardships of this disorder and we must develop a national strategy on autism.

I am proud to share with you that we have formed an all-party subcommittee to address neurological disease and to bring researchers, stakeholders and decision-makers together on ASD, MS, ALS, Alzheimer's disease and Parkinson's disease, all of which are major neurological diseases that cross all ages.

One in three, or 10 million, Canadians will be affected by a neurological or psychiatric disease, disorder or injury at some point in their lives. NeuroScience Canada estimates that about $100 million at most is invested in operating costs for neuroscience research in Canada annually. This compares with a burden of disease in the order of $20 billion to $30 billion, a ratio of 200 to 1.

This past April, Yoko Ono unveiled Promise, a mural created especially for World Autism Awareness Day. It consisted of 67 pieces, representing the 67 million autism sufferers around the world. The pieces were to be broken apart and auctioned off individually. With each winning bid came the promise that when the cure for autism is finally found, all the pieces will be reassembled for a day. Promise, just like World Autism Awareness Day, symbolizes the coming together of society around people with autism and the unfinished work of the world in finding the causes and cure for the disorder.

Let us keep the promise. Autism speaks: it is time to listen.

Mr. Mike Lake (Parliamentary Secretary to the Minister of Industry, CPC):
Mr. Speaker, I do not profess to be an expert on many things and I certainly am not an expert on autism, but I would profess to being an expert on being a parent of a child with autism. I have a 14-year-old son, named Jaden, who has autism. He was diagnosed 11.5 years ago with autism. I am not going to get into the numbers and the definitions. I will let others do that and it is a very important part of the debate here. Instead, I want to talk about why autism awareness is so important and why the bill is so important.

Before I do that though, I will recognize a few people. I would like to recognize Senator Munson for putting forward this important bill and the work that he has done in terms of raising autism awareness. I would definitely like to recognize our Minister of Health who, on April 2, declared that from now on each April 2 will be known as World Autism Awareness Day in Canada.

I would like to recognize colleagues from all parties who have shown an interest in my son and asked me many questions about autism, and have come to me for advice in terms of dealing with constituents who approach them on this issue. Most of all, of course, I would like to thank Jaden and recognize my son for all that he means to me. I would also like to take the opportunity to recognize my wife, Debi, and my daughter, Jenae, for the work that they do in holding down the fort at home while I am here working on behalf of my constituents.

Why is autism awareness so important? There are many reasons. First, because early diagnosis is critical. In the past decade, we have seen that knowledge about autism and related disorders has increased tremendously. We have seen that more early diagnosis, treatment and support at those early stages is absolutely essential. We need not only parents to be aware but for doctors and the public at large to be aware of this disorder, what it looks like and recognize it early.

In our experience, when Jaden was 18 months old, we remember taking him to the doctor to express some concerns about the fact that he was not talking and there some other behaviours that we noticed. At that point, just over a decade ago, even the doctor who looked at him said, “Oh, he's a boy and some boys talk late”. We have heard similar stories from many parents who eventually had diagnoses of autism.

It was actually a cousin of ours who mentioned, when Jaden was about 21 months old, that maybe he had autism, that some characteristics looked familiar. The cousin knew someone with autism and thought maybe that was the case. That was the first time it was brought up to us.

Thankfully, at two years, we did recognize that Jaden had autism and at two-and-a-half he was actually officially diagnosed at the Glenrose Hospital in Edmonton, and we were able to start treatment. Many of the people who have spoken to the bill have talked about the importance of that early treatment and quality treatment. We were able to get that treatment and Jaden's pediatrician several years later commented that Jaden was an entirely different kid because of the treatment he received at those early ages.

Another reason why the bill is important, why autism awareness is important, and probably the most important reason in our view is because families need support. I am not just talking about the support of the medical community. There has been talk of the treatment challenges across the country, but I am talking about support in terms of understanding, the things we do not see. When families are dealing with autism, oftentimes we do not see that 24/7 stress they are under. We do not see the knife jammed in the door jamb at night because they are concerned that their child might decide to go swimming and it is mapped out in his or her head where the swimming pool is and he or she knows how to get there, but the child has no concept of danger, traffic, or nighttime. If the child decides to go swimming, he or she might just go swimming.

We do not see the times that the child wakes up in the middle of the night. In our experience, it was often about five or six times a night that Jaden would wake up and we would be alerted by a bang on the door. Jaden was nonverbal so he communicated by saying “bah bah bah” before he threw himself on the bed in the middle of the night. This would happen five or six times over the course of the night. I am not sure how the translators will translate “bah bah bah”, but now we are down to two or three times in the night that he often wakes up, but there is this stress that is caused in terms of lack of sleep and the need to be on high alert all the time for the child's safety because the child does not understand or recognize danger the way other kids do all day long.

One time we had an incident. We were at a friend's house who had a swimming pool. Jaden was about five or six years old and he stepped out onto the tarp of the swimming pool. He did not really understand that the tarp was not solid and he tried to walk out on top of it. He loves swimming, so there will be lots of swimming stories here.

Then there are the things that the public does see but does not necessarily understand. My colleague, who previously spoke, talked about kids throwing themselves down onto the floor in the middle of a grocery store. These are six- or seven-year-old kids who look like every other kid, but throwing a temper tantrum in the grocery store can be very hard for parents.

There was a situation in Edmonton not that long ago, about a year and a half ago, where a child threw a tantrum and was squealing and making a lot of noise in a restaurant. The restaurant manager came to them and asked them to leave because they were being disruptive, not understanding that the child had autism or not understanding what that was.

There is another funny story actually with Jaden, just to kind of illustrate the sort of lack of filters, in terms of conduct, or lack of barriers. When Jaden was about eight years old, we went to a McDonald's in the West Edmonton Mall between Christmas and New Year's. The place was jam-packed. There were about 50 people in line and about 20 people buzzing around behind the counter, working. It was probably one of the busiest McDonald's I have ever seen. We were picking up food for a bunch of other people, but it was Jaden and I in the restaurant. We got to the front and got our food. I was walking out with my hands full so I could not hold Jaden's hand like I normally would. We got about halfway out of the restaurant and all of a sudden Jaden got a big smile on his face, started giggling, turned around and ran, keeping in mind he was seven years old, behind the counter, all the way across behind the counter, with all these people starting at him, reached into the bin where they held crushed Smarties, grabbed a handful of crushed Smarties and shoved them into his mouth. He had Smarties all over his face and the biggest smile, as everybody stood aghast at this scene that they had just witnessed of this pretty normal looking seven-year-old running behind and filling his face full of Smarties.

However, not all the stories are so funny. It is very difficult, for example, for kids with autism to express more abstract feelings. We had one situation around that same time where Jaden had got hurt. He had actually fallen down the stairs. He came upstairs and his head had been cut pretty badly and he was bleeding pretty badly. We had no idea what had actually happened. All we knew was that his head was bleeding badly, but he could not explain, he could not articulate. Even though he can talk on a computer or write things down, it is hard for him to express things that are more abstract. As parents, we can imagine how difficult that is when our children might be suffering from something like the flu or a sore stomach or something like that, and they cannot possibly explain what it is that is causing the pain they have.

These are things that parents of kids with autism deal with every day.

I have not even spoken about the challenges that parents of adults with autism face, wondering what is going to happen to that child of theirs when they are not there any more to take care of them, and how heartbreaking that is. It is something that we think about, even at this stage in our lives, fairly regularly.

I want to talk a bit about the people who go above and beyond, the people who get autism awareness, who express that awareness. I want to thank people who take their time to, in our case, encourage Jaden to get involved in things. He has been involved in hockey. A coach of a tae kwon do class started a class for kids with autism. Even though he did not have any family members, he recognized the potential there. There are cooking classes and things like bowling. Different things where community leaders have had their eyes opened and been made aware of the potential for kids to get involved.

I also want to quickly talk about the opportunity for people with autism to contribute. In Jaden's case, at his school, they have found ways to have him work in the library, putting books away, which is something that he absolutely loves to do and is incredible at.

I see my time is getting very short. I could talk for hours about the need for autism awareness and thank the people who have contributed and enriched our lives. I will close with this. I want to recognize and thank all of the people out there with autism spectrum disorders, the family members and friends who live with this disorder every single minute of every single day. God bless them.

Mr. Peter Stoffer (Sackville—Eastern Shore, NDP):
Mr. Speaker, it is an honour to follow the member from Edmonton. I have had the honour and privilege of meeting his son. He is a great kid. I have also met hundreds of other children with autism across this country. They are all beautiful, wonderful children. The member of Parliament from Edmonton's son has the right parents. They are beautiful parents and they are doing everything they can to help him. Jaden is very lucky to have the parents he has.

Beyond the love of the parents, we need the support of governments. We need the provinces and the federal government to work together to develop a national strategy so that it does not matter where one lives in this country. If a child or family member has autism, they should be able to get the help that they need. It should be similar across the country.

We just do not have that right now. Alberta is fortunate enough to have treatment up until the age of 18. In Nova Scotia, we have it starting at six, with a few trial programs here and there. Quebec has its programs as well as Ontario, but there is not a national strategy. We have asked for many years that the federal government and the provinces work together to develop a strategy that allows us to develop the best practices. No matter where people live in this country, if they have a child with autism, they should be able to get the treatment and care that is required in order to assist them.

I want to mention a few people who have been instrumental in my life in raising the cause of autism with me. First, there is Mr. Andrew Kavchak of Ottawa. When I saw him years ago, he was outside here with a sandwich sign, asking that autism be under medicare. I did not know much about the issue at that time, but I learned from him and many others. There is Laurel Gibbons, also of the Ottawa area, whose husband serves in the military. He is away an awful lot and they have a son with autism.

Roxanne Black of Vancouver has two children with autism. I know some military folks from my riding in Eastern Passage. One gentleman has served overseas in many tours of duty. He has a child who is a severe flight risk. As the hon. member indicated, some suffer a lack of speech and some are flight risks. If the crack of a door or window is open, they will take off, not knowing the fear of danger. The only thing they know is that they are going. Whether there are cars on the road or whatever, they are oblivious to that. They will just keep on going. While her husband is serving in the military, that lady back home requires support programs in order to assist her and her family.

Anyone who has met children with autism knows that they are some of the most wonderful, beautiful and gifted children in this entire country. They deserve that opportunity. In fact, I know that the autism pin that people wear is in the shape of a ribbon, but it is actually a puzzle. From what I have heard from medical experts, the objective is that if we can get the puzzle rearranged at a young enough age and if these children are diagnosed early enough, we can assist them to the point where they can live productive lives without much assistance. This is the key.

One system does not fit all children or all families. We know that. However, we have a caring and compassionate Canada. I honestly believe, our party believes, and I am sure that most members of Parliament also believe that if we put our heads together, we can come up with a system that is cost effective, accountable, and does what we would like it to do. We can provide a national system in this country for the treatment of autism.

I am going to highlight this again. I have mentioned his name many times in the House, but there is a young man here named Josh Bortolotti, who is from the Ottawa area. I believe he is around 15 years old right now. A few years ago, he was in an Ottawa Life magazine as one of the future people to watch for. Josh Bortolotti is a young man whose younger sister is autistic. He said to me and many people in the House many times that his sister cannot speak for herself, so he was going to do it. That is not bad for a kid who was only 11 years old at that time.

Josh is now 15 and is still fighting the good fight. He is raising the issue and raising funds for autism treatment. This young man will be the next Craig Kielburger, the gentleman who raised the issue of child work slavery around the world. Craig is a dynamic young man and someone to watch out for.

This is something that goes beyond politics. Every one of us knows someone in our ridings who has dealt with autism.

We just heard here in the House of Commons a very eloquent defence by a father standing up for his child. I have heard my colleague from Edmonton speak so eloquently on this issue. Kudos to him and to his wife for raising Jaden and giving him every opportunity they can possibly give their child.

Other families are not as blessed, which why we need a national strategy to ensure that autism is not put in the closet and ignored because we do not have the funds for it. The reality is that we do have the funds for it.

I have said it many times, and I honestly believe that if we could get together in a non-partisan way and work with our provincial cousins and first nations groups we could develop a strategy so that no matter where people live in this country, if they have a child with autism the child will get first class treatment and the family will get the best services possible to assist them.

On behalf of our party and all the people in my riding who I represent, I thank the member for Charlottetown for moving this particular motion and all those who spoke on this important issue. It is one of the issues that transcends politics. Hopefully, we will see the day when we can have a national autism strategy in this country.

Mrs. Cathy McLeod (Kamloops—Thompson—Cariboo, CPC):
Mr. Speaker, I am pleased to join in the debate today on this very important discussion of Senator Munson's Bill S-210, An Act respecting World Autism Awareness Day.

In my background in health care as a community based nurse, I remember parents visiting with newborn children and their delight and excitement as they welcomed these new additions into their families. I also remember visiting with parents over time as their children normally would start speaking. The parents would be concerned about the development of their children when they realized the very difficult and unique challenges they would need to deal with in terms of their children being diagnosed with autism.

The other experience that stands out very prominently in my mind was of a particular child who was not diagnosed until he was a teenager. I had known his mother quite well over the years and she would say, “God gave me patience and then God gave me Mark”. She was just amazing. However, it was not until her child was in his late teens that he was diagnosed and got special support. I have to wonder how much easier it might have been for her and Mark and how much easier his life might have been had he managed to have an earlier diagnosis and perhaps support earlier in his life.

The Chris Rose Therapy Centre for Autism in Kamloops is a centre for children who have been most profoundly affected by this disease. The caregivers and the parents are amazing. It is a very challenging circumstance and the passion, commitment and work the caregivers and parents do is absolutely amazing.

I will now focus on some of the things the government is doing. We know autism affects Canadians across this country, impacting the lives of those affected, as well as family members and beyond. Among children under the age of four, autism is the third most commonly reported disabling chronic condition, after asthma or severe allergies and attention deficit disorder. Among Canadians aged 15 and older, the prevalence of autism is not known, but approximately 5 out of every 1,000 report being disabled due to developmental disability, which would include autism, among other conditions.

The actions of the government to improve the lives of those affected by autism are part of our ongoing commitment to safeguard the health and safety of all Canadians. The Government of Canada recognizes that there is a lack of evidence and consensus regarding the nature, cause and treatments for autism, and that this is a barrier to any strategic undertaking by government and stakeholders to address autism. It is for that reason that the federal government is supporting a variety of activities and initiatives to improve knowledge and awareness of autism.

For example, in declaring April 2 as World Autism Awareness Day, the government has demonstrated its commitment to increasing awareness and understanding of autism spectrum disorder.

In addition, the federal government provided funding in 2007-08 to the Canadian Autism Intervention Research Network, CAIRN. This funding supports the network's excellent work of disseminating new knowledge about autism and has improved access to quality information on autism for families affected by autism and for those providing care.

We also have provided addition support this year to the Oxford Centre for Child Studies to further fund CAIRN, to conduct a survey among autism stakeholders to identify research priorities and to host a conference this October. This conference provided an ideal opportunity for all stakeholders and scientists to come together to pool knowledge and experience in the development of updated research priorities for autism. We understand the response to this was positive.

Research has been a strong priority in the federal government's work to support Canadians with autism, as noted by my colleague. CIHR's Institute of Neurosciences, Mental Health and Addiction is supporting autism-related research and is working with partners in the autism community to set research priorities, to coordinate action and to accelerate the speed at which knowledge is translated into improved health for Canadians with autism and their families.

Health Canada also plays an important role in this government's activities to address autism. The strategic policy branch of Health Canada is designated as the autism spectrum disorder's lead for actions related to autism at the federal health portfolio level. In designating a portfolio lead, the government has demonstrated that it takes the issue of autism seriously, and we will continue to do so.

Another pivotal action undertaken by this government is autism surveillance. I will talk a little bit about this today. Surveillance is the systematic and ongoing collection of data about diagnoses of a disorder in a population over time. Its purpose is to enable action to minimize the negative effects of the disorder in question.

Effective surveillance requires high-quality screening and a comprehensive surveillance program to manage the results. The accurate and up to date information on autism in Canada, which effective surveillance can provide, is essential to implementing an effective response. Quality information on the distribution and impacts of autism in communities across the country allows public resources to be put to use where they will make the most difference.

The importance of the autism surveillance is outlined by the Senate Committee On Social Affairs, Science And Technology, chaired by the hon. Art Eggleton, in its final report on the enquiry on the funding and treatment of autism. The report, entitled Pay Now or Pay Later: Autism Families in Crisis, recommended the stakeholders be consulted regarding autism surveillance and cited a call for national surveillance of autism.

The government heard the call for better surveillance information on autism in Canada and has taken action to strengthen this crucial link in the autism chain.

Today we have heard from fathers and from everyone who has been touched and impacted. We are in support of this important initiative. We are also hearing that the government is taking some good action on some very important things, such as the surveillance and research that will be absolutely critical.

Hon. Shawn Murphy (Charlottetown, Lib.):
Mr. Speaker, I first want to take this opportunity to thank every member of Parliament who spoke in favour of this bill. Although we do not necessarily agree on everything that happens in this House, I believe we agree this is a major issue facing Canadian families.

As has been pointed out by other members, this bill originated in the Senate and was championed by Senator Jim Munson. I would like to take this opportunity to commend and congratulate Senator Munson for the time and energy he put into this important piece of legislation. Speaking of persistence, Senator Munson introduced the bill three times, but because of elections and prorogations, it was delayed. He certainly is persistent and needs to be congratulated.

As has been pointed out by other speakers, who I submit are more knowledgeable than I am on this particular issue, presently in Canada approximately one in 165 Canadian children is living with some form of autism. That means that one in every 165 Canadian families is dealing with the financial and emotional hardship of caring for a child with autism. These families need and deserve the support of the federal and provincial governments and the community at large.

It must be pointed out that this bill does not provide that type of help. The most fundamental function of this bill is that it reiterates the importance of raising public awareness about autism spectrum disorders. The benefits of public awareness certainly cannot be denied or understated.

As Canadians, we have to realize that people affected by autism are not just statistics; they are not numbers on a page. We heard that from the member for Edmonton—Mill Woods—Beaumont, who eloquently spoke of his experiences. Rather, they are our friends, colleagues, co-workers and neighbours. That reality deserves our attention.

This bill is a reminder to us in the House and all Canadians that there is much more we can do as parliamentarians and lawmakers to address this alarming national health crisis, and I underline the word “health”. Right now, there exists no national strategy for the treatment of autism spectrum disorders. That means that treatment availability and financial support vary tremendously depending on where one lives in Canada.

In certain provinces, autism treatments, including applied behavioural analysis and intensive behavioural intervention, are covered under the provincial medicare program and are more readily available, especially, as has been pointed out by others, for those who are diagnosed early where treatments are much more effective. However, in other provinces of the country where facilities or trained caregivers are limited, families have to pay out of their own pockets for this treatment. In some cases the treatment is not even in the health envelope; it is in the social services envelope.

Some families, as has been pointed out by others, can expect to pay upwards of $65,000 each year for treatment, a financial burden that no family in Canada should have to endure. That unfairness does not reflect my view of the values that we have as Canadians.

For those who are interested in following this issue, I point out, as the previous speaker did, the excellent Senate report entitled, “Pay Now or Pay Later”, which discusses this particular issue.

To bring us back to the bill we are presently considering, I see this legislation currently before us as an important stepping stone in this process. Hopefully we will achieve a national autism strategy designed to protect and support the families and those living with autism.

Earlier this year the Minister of Health recognized April 2 as world autism awareness day. I applaud the minister's efforts, but at the same time, I remind the House that there is no force of law behind such a declaration. The only way is to formally declare April 2 of each and every year as world autism awareness day, as has been done by 192 other countries in the world following the United Nations Convention on the Rights of the Child and the United Nations Convention on the Rights of Persons with Disabilities.

In closing, I urge every member of the House to think seriously about this bill, to consider those constituents of theirs who are facing autism each and every day of their lives and to move Canada forward in the fight to better the lives of Canadians across the country who are dealing with autism spectrum disorders.

The Acting Speaker (Mr. Barry Devolin):
It being 12:03 p.m., the time provided for the debate has expired.

The question is on the motion. Is it the pleasure of the House to adopt the motion?

Some hon. members: Agreed.

The Acting Speaker (Mr. Barry Devolin): I declare the motion carried. Accordingly the bill stands referred to the Standing Committee on Health.

(Motion agreed to, bill read the second time and referred to a committee)

[Super Dad]

Hello fellow FEATers:

I wonder if any of you has had the same problem with the Canada Revenue Agency:

They are allowing claims for the consultant's fees because she is a "medical professional"; they are allowing claims for the line therapists' fees because they do "tutoring"; but they are NOT allowing claims related to the written work, meetings, or training done by the team lead/program coordinator. They keep on saying:

"not tutoring services and not a medical practitioner".

How do you explain this kind of thing to the CRA?

Thank you.

Tony
tony.tamer@yahoo.com

[Super Dad]

Hello fellow FEATers:

Do you know a good accountant or lawyer who is good at dealing with the Canada Revenue Agency when therapy expense claims are being rejected?

Thank you.

Tony
tony.tamer@yahoo.com

[Dubravka Skrijelj]

Hello Everyone,

Good news for all parents who will stay on a direct payment option and another great reason not to switch to the invoice payment option- THE PROPOSED LEGISLATION MAIKING AUTISM SERVICE PROVIDERS SERVICES EXEMPT FROM GST/HST HAS PASSED!

From the first information provided, being that it is a new legislation, your consultant should fax the letter to GST/HST Rulings requesting a written ruling (which is legally binding) for each specific case. The following information should be provided: what the consultant’s education and/or certifications are (including if they are on the RASP list), who are the consultant’s services provided to, what those services consists of, and how the consultants is paid (including the information about payment from the government vs. parents).
For those consultants who already have a GST/HST number, the number would be discontinued (if services were determined to be exempt). If the consultant does other things in addition to exempt services, he/she may still need a GST number to use for those services.

Your consultant should call the GST/HST Rulings, let them to read the ruling and then send the letter in. It takes about 2-3 weeks to receive a reply. The contact information is:

GST/HST Rulings
Phone: 1-800-959-8287
Fax: 604-691-478

[Barbara Rodrigues]

Does anyone know if the media came out for the rally and if so what stations? Thanks in advance.

[Louise Taylor]

Thank you to everyone who came out to the rally today at the Premier's consituency office. It was especially gratifying to see so many new faces in the crowd. We did manage to leave some of our literature in the Premier's mail box so that, one way or another, our message will get out to him. And don't forget your "homework" assignment – to write, phone, email or otherwise bombard the Premier's office and demand that science-based treatment for autism be covered under our medical services plan in it's entirety.

Thanks again for a great effort today!

[Mike & Rachel Goetz]

Hi everyone,

Diane posted yesterday regarding invoice payment as it relates to service providers (BI's specifically) who are employees. This is an interesting point of discussion.

I have some experience in work issues concerning employment vs. contracting, but I am not an expert. In essence, I don't think any BI, consultant, or other professional who works with your child in an ABA program should be considered an employee. It is more appropriate and simpler for the service providers to be contractors – with service providers as contractors, you don't have to manage payroll, withhold tax, or pay CPP & EI. The contractors pay tax, CPP, and EI directly to the CRA at tax time.

In any field, the distinction between contracting and employed is a grey area as viewed by the CRA. There are certain factors they look at when considering an individual case. They will look at the level of control the payer has over the worker, who pays for the equipment being used to carry out the work, the degree of financial risk taken on by the worker, etc.

The CRA has a leaflet you can read about this stipulation here: http://www.cra-arc.gc.ca/E/pub/tg/rc4110/README.html

In general, I would suggest that you take care to remember when you're dealing with your service providers that they are the person who is providing a service to you, and you are paying them for that service. You are not their employer, although you of course can specify aspects of the work that they must adhere to. For example, I would not make a guarantee for the length of a contract, but I could set up a contract which contains a notice period that both sides must adhere to.

One final note; service providers who work for other families as well are much more likely to be considered contractors and not employees because they carry out their business by providing services for several clients, and are not beholden to any one client. If you have a service provider where you are their only client, it might be a good idea to take some care in how you establish you relationship with that service provider so that they are not considered employees by the CRA.

[Author]

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