Showing posts with label ibi. Show all posts
Showing posts with label ibi. Show all posts

Sunday, August 03, 2008

Canadian Autism Spectrum Disorder Online Petition

To all Canadians, if you have not already done so, I urge you to visit and sign the Autism Spectrum Disorders Online petition at:

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


You will need a Canadian address, including postal code, in order to sign the petition. The petition states:

"Autism Spectrum Disorder (ASD)"

To: Canadian Parliament (House of Commons)

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 to

1) 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.

Sincerely,

I signed the petition yesterday (signature #6287). This is a quick easy way to remind our federal politicians that the health care that is so important for all Canadians should include autistic Canadians and treatment for Autism Spectrum Disorders.

Harold L Doherty

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Sunday, July 20, 2008

Ontario Failing Autistic Children - Canada Needs Medicare for Autism NOW

More proof that Canada needs Medicare coverage for Autism NOW can be found in the CP/Globe & Mail article Agencies decry Ontario's funding of child autism treatment by Maria Babbage. From Northern Ontario to Toronto and London non-profit agencies are underfunded and forced to cut services. Autistic children are losing out. Children are continuing to wait for a place on the lists to receive treatment:

Stacey Sayer, a 38-year-old nurse in northern Ontario, said she's waited two years for her 9-year-old autistic daughter Maggie to receive IBI therapy and there's still no end in sight.

“We're very worried, yes, that time is ticking away and we're not getting what we need, and she's not getting what she needs,” Ms. Sayer said.

“We're worried about her whole future and what's going to happen to her in the end.”

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Monday, May 12, 2008

Autism Hunger Strike - Canadian Press Report

Canadian Press has reported on the Autism Hunger Strike being carried on by Stefan Marinoiu outside Queen's Park in Toronto. Stefan has done an incredible job, once again, in bringing public attention to the needs of autistic children in Ontario. He has a press conference scheduled for tomorrow morning. People should get out and support Stefan tomorrow.

I don't know if my advice will be heeded but I hope Stefan has a time line in mind to bring this Hunger Strike to an end. Autistic children in Canada need a strong advocate like Stefan but they need him, more than his memory, to help them.

CP : TORONTO — A Toronto man who has been on a hunger strike for over a week is demanding the province eliminate the backlog of autistic children waiting for a crucial but costly therapy.

Stefan Marinoiu, 49, will call on the government Tuesday to move more quickly to provide treatment for children with autism, including his teenage son.

He wants to see the wait list of more than 1,100 autistic children who are eligible to receive intensive behavioural intervention therapy, or IBI, eliminated by November.

Marinoiu also wants the province to commit to providing the treatment in schools no later than September next year.

Education Minister Kathleen Wynne says thousands of people have already been trained to provide another kind of therapy, called applied behavioural analysis, in schools.

She says some schools have therapists to provide the more intensive IBI therapy, but not in regular classrooms.


On another note, I have trouble understanding this great debate in Ontario about IBI versus ABA as those expressions are used by Education Minister Wynne and others, including parents, in Ontario. Intensive Behavioral Intervention IS ABA. It just refers, to the intensity - the number of hours per week of intervention. If it is provided to children between two and five it is typically referred to as Early Intensive Behavioral Intervention. But it still remains ABA. See Autism and ABA EIBI Saves Up to $2,500,000 SUMMARY: Cost-benefit Estimates for Early Intensive Behavioral Intervention for Young Children with Autism John W. Jacobson,James A. Mulick,and Gina GreenIn Behavioral Interventions, 1998, Volume 13, 201-226 :

" Early Intensive Behavioral Intervention (EIBI)

Studies have demonstrated that intensive early intervention using the principles and methods of applied behavior analysis (ABA) can produce substantial benefits for many children with autism/PDD (Anderson et al., 1987; Birnbrauer & Leach, 1993; Fenske et al., 1985; Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). Although there were some variations in procedures across studies, the interventions generally met the five criteria listed as essential by Guralnick (1998) and Ramey and Ramey (1998).

The interventions:

  1. emphasized skill development through positive reinforcement;
  2. started with an assessment of each child's current skills and deficits; instructional objectives, teaching methods, pacing, skill sequences, and reinforcers were all customized to the characteristics and needs of each child;
  3. addressed all skill domains;
  4. used frequent direct observation and measurement of individual performance to determine if progress was occurring, and adjust instructional methods accordingly;
  5. included parents as co-therapists; and
  6. were directed and supervised by individuals with postgraduate training in behavior analysis plus extensive hands-on experience in providing ABA intervention to young children with autism."

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Tuesday, February 05, 2008

Autism Class Action Lawsuit - Ontario Court of Appeal



Autism Class Action Lawsuit

at the Court of Appeal for Ontario


(Appeal hearing on a preliminary motion)



A crucial day in court that will determine whether

we will be allowed to continue the fight for full and timely access

to ABA/IBI intervention and in the schools



Monday February 11, 2008

at 10:30am


130 Queen Street West, Toronto

(at University Avenue , just west of City Hall)


Please join us to show your support for the families


For more information, please contact: t.sagharian@sympatico.ca


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Backgrounder


Autism Class Action Lawsuit (Sagharian)


In 2004, five families representing six children with autism filed a class action lawsuit against the Ministry of Education, Ministry of Children and Youth Services, and seven school boards in Ontario for failing to provide or fund ABA/IBI (Applied Behaviour Analysis/Intensive Behavioural Intervention) in the education system or without excessive and detrimental delays.


The plaintiffs have spent their savings, mortgaged and down-sized their homes, borrowed money and taken extra jobs to fund the services that their children require. They have had to make tough decisions about which services to access when they could not get both.


The case highlights key short-comings of services to children with autism. The families are suing the government and school boards for forcing the families of children with autism to make the impossible choice between the specialized services that help children with autism develop, and their right to a public school education. The families are also challenging the extensive waitlists for the AIP (Autism Intervention Program). The families want to ensure better access to publicly funded and quality services for children with autism in Ontario . They seek a change to the current approach to autism services, as well as compensation for the expenses that they have incurred as a result of the government and school boards’ past errors.


In 2006, the government and school boards brought a motion to strike the plaintiffs’ claim, and in March of 2007 a judge of the Superior Court of Justice, Mr. Justice Maurice Cullity, did strike portions of the claim. In response, the plaintiffs have appealed this decision to the Court of Appeal, with the hearing scheduled for February 11, 2008 at 10:30am.


In the aforementioned motion to strike, the government and school boards went after these families for $85,000 in legal costs. Fortunately for the families, Justice Cullity ruled in June 2007 that they should not have to pay these costs because they were raising an important public interest issue. In his decision, he stated:


"The public interest was involved not merely because this was Charter litigation but also because the community as a whole has a legitimate concern and interest in the welfare of disadvantaged children who are particularly vulnerable members of Canadian society.... It is not disputed that many of the parents have made significant financial sacrifices and have suffered serious financial consequences because of the lack of public funding for the programs they consider to be necessary for the educational and social development of their children. The fact that the Crown has now accepted a number of their contentions illustrates the value of this kind of public interest litigation and... the objectives of behavioural modification and access to justice are, I believe, sufficiently engaged to bear on the question of costs."


Autism Program in Ontario


In 1999, the province of Ontario, initially through the Ministry of Community and Social Services and now through the Ministry of Children and Youth Services, introduced the Intensive Early Intervention Program for Children with Autism (the “IEIP”, renamed the Autism Intervention Program "AIP" in August 2006) to provide services to children with autism. Initially, the program was only available to children under the age of six.



Both an Ontario Ombudsman report released in April 2004 and the report of the Office of the Provincial Auditor for Ontario in November 2004 identified several significant problems with the administration of the IEIP, including the difference between what it pays to the families and the actual cost of the treatment.


When Justice Kitely ruled in Wynberg/Deskin that the IEIP age cut-off violated the Charter’s equality guarantee under section 15(1), the government suspended the age cut-off (as of April 2005). This decision was over-turned by the Court of Appeal. Nevertheless, the IEIP/AIP has operated without discriminating based on age since Justice Kitely’s decision.


Unfortunately, the IEIP/AIP has long had a considerable waitlist that continues to result in eligible children not receiving necessary services. When the age cut-off existed, the waitlist was already so long that children would become ineligible for the program based on their age before ever receiving services. Since the elimination of the age six criterion for cut-off, the waitlists have become much lengthier, with the result that children with autism continue to be effectively denied necessary care.


The province spends millions of dollars every year on special education. In Ontario , all other children who require therapeutic or medical services are able to access services in a harmonized fashion alongside or with their education. However, when children with autism reach school age, they must either, enter a public school system that does not provide adequate education or support, where they will inevitably fail to improve and may regress, or enrol in a private program at considerable expense to their families and without the benefit of an integrated classroom setting. In contrast, children with autism in the United States are able to access ABA/IBI through the education system until the age of 21, and have been doing so for over 15 years.


Following the February 2007 recommendation in the Report of the Ministers’ Autism Spectrum Disorder Reference Group, Education Minister Kathleen Wynne announced that the Ministry would be directing school boards to provide ABA in their schools. This was an acknowledgment by the Minister that ABA was not previously being provided in school, that it could be, and that it should be. However, in a memo to school boards shortly afterwards, the Ministry indicated that ABA was already being used in some schools and that it would not be directing the use of IBI.


Then during the election campaign in the fall of 2007, the Liberal Party included in its party platform document the following promise:


“Helping more students with autism by providing $10 million to prepare schools to deliver IBI therapy on-site for the first time, a step forward made possible by our earlier decision to scrap the age-six limit for children with autism.”


Previous Autism Litigation in Canada


Auton: In 1998, families in British Columbia filed a lawsuit arguing that ABA is a medically necessary treatment and should be covered through the health care system. Although this case succeeded in the two lower courts in BC, it lost at the Supreme Court of Canada . The Supreme Court stated that the government did not have to provide ABA as ABA professionals are not registered health care practitioners and ABA is not delivered in a health care setting such as a hospital. Under provincial health care legislation, ABA could only be included as an add-on health service, in which case it would be at the discretion of the province as to how much to fund, which children would receive funding, and whether the province would fund the service at all.


Wynberg/Deskin: In Ontario, the Deskin case was filed in 1999 by a single plaintiff. This was followed by the Wynberg case filed in 2000, which eventually included 28 families. The cases were against the Ministries of Health, Education, and Social Services and were based on the Auton case. The families challenged the age cut-off in the IEIP as discriminating based on age and disability. They argued that the government acted negligently in the design and implementation of the IEIP. They also argued that the government breached their rights to life, liberty and security of the person by denying their children the benefit of an education.


When the 2004 Supreme Court decision in Auton was released, the Ontario cases had to reframe their claims, removing health and refocusing on ABA as an education issue. The Court allowed them to refocus their case, but prevented them from bringing evidence in support of this change in focus.


The Wynberg and Deskin cases succeeded at the trial court but then lost at the Ontario Court of Appeal. In denying their claims, the Court of Appeal specifically noted that it lacked significant evidence relevant to the case, including evidence related to ABA and education. It also stated that it was unfair for the comparatively small group of families participating in the case to get compensation while other families of children with autism languished. The trial judge, Justice Kitely, noted that the government had indicated that the school boards were the proper defendants to the claim and should have been a party. The families sought and were denied leave to appeal to the Supreme Court of Canada .


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Thursday, February 15, 2007

Bill C-304 Shawn Murphy's Autism Motion Debates

Debate continued yesterday on Charlottetown MP Shawn Murphy's private member's motion for a national autism strategy including amendment of the Canada Health Act to ensure government funded ABA treatment for autism across Canada. As expected the Conservatives who spoke hid behind provincial jurisdiction arguments to preclude a solid commitment to treating autism. I was surprised that an NDP speaker voiced some concern on that ground as well, given that Canada's national health care scheme essentially originated with that party (CCF-NDP) and Tommy Douglas. Moncton MP Brian Murphy gave an excellent speech in support of the motion which was put over until February 21, 2007. It is clear though that with Conservative opposition as voiced yesterday, and Bloc Quebecois opposition, there is no hope for the motion to pass. I commend Shawn Murphy though for bringing this motion and raising autism awareness and Brian Murphy for his excellent speech in support of the motion. The debates yesterday from Hansard:

National Strategy for the Treatment of Autism Act -

The House resumed from December 7, 2006, consideration of the motion that Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act, be read the second time and referred to a committee.
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Mr. Rick Dykstra (St. Catharines, CPC):
Mr. Speaker, it has been a little while. I think I got about three minutes of my speech in prior to the break and it is good to get back into it.

The Canada Health Act discourages the application of extra billing or user charges through automatic dollar for dollar reductions or withholdings of federal cash contributions to a province or territory that permits such direct charges to patients.

Under the comprehensiveness criteria of the Canada Health Act, provincial and territorial health insurance plans must ensure coverage of all insured health care services. Insured health services under the act are defined as medically required or necessary physician services, hospital services, and surgical dental services when a hospital is required. In this way the Canada Health Act defines a minimum range of services to be insured on a national basis in our country.

Services provided by other health care providers outside a hospital are not considered to be insured health services under our act. That includes intensive behavioural therapy services for autism spectrum disorders since these services are generally provided outside of hospitals by non-physicians. These services are considered to be additional benefits and may be insured at the discretion of the province or territory, but that is their decision. They are not subject to the act's provisions. However, there is nothing in the Canada Health Act that stops provinces and territories from providing these services on an insured basis if they so wish to.

The bill presented by my hon. colleague, if adopted, would affect the definition of insured services under the act. In short, that means if Bill C-304 were to be passed by this House, provinces and territories would be required to provide applied intervention therapy services on an insured basis to all their residents, in addition to hospital and physician services.

The purpose of the Canada Health Act is to ensure that Canadians have access to medically necessary hospital and physician services without financial or any other impediments.

Hospital services that are considered to be medically necessary are outlined in the act and include, among others, such services as nursing services, the use of operating rooms, and drugs administered in hospitals. Medically necessary physician services are agreed upon through consultations by members of the medical profession and provincial and territorial governments. They are then determined by physicians at the point of service.

Referring to specific services in the Canada Health Act would be incompatible with its overall structure and intent.

The Canada Health Act references “insured services” and “medical necessity” but does not define specific services for specific illnesses or conditions. This is critical to the act and it needs to be clearly understood within the context of this private member's bill.

In provinces and territories there are mechanisms in place to examine the insured status of health services. Provincial and territorial ministries of health consult with members of the medical profession to determine which services are medically necessary and should be covered by their plans. Such consultations have proven to be an extremely effective method of insuring that Canadians receive appropriate medical care.

The second concern that this bill presents is with regard to the respective roles and responsibilities of the federal and provincial and territorial governments.

As we know, under the Canadian Constitution, the responsibility for matters related to the administration and delivery of health care services falls primarily under the jurisdiction of provincial and territorial governments. It is part of our Constitution and one that we must ultimately respect.

While we may not always agree, it is the responsibility of the provincial and territorial governments to set their priorities, administer their provincial health and social services budgets and manage their resources in the manner that best suits provincial and territorial needs while still upholding the principles that are in the Canada Health Act.

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The federal government, for its part, by law, is responsible for the promotion and preservation of the health of all Canadians. It is appropriate, when describing federal responsibilities in health care, to note that the federal government cannot interfere in provincial-territorial responsibilities as defined under the terms of our Constitution, neither can we be seen as infringing upon those responsibilities.

Unfortunately, Bill C-304 attempts to require provinces and territories to provide behavioural treatment services for autism and to do so on an insured basis. As it is the provinces and territories that are responsible for matters dealing with the delivery of health services, the bill would be perceived as an unacceptable intrusion on provincial and territorial responsibilities across the country.

Amending the Canada Health Act would be viewed by the provinces as a unilateral imposition by the federal government and could potentially upset the longstanding federal, provincial and territorial relationship that we now have and that has been encouraged to develop and has developed the health care system that we as Canadians are truly proud of.

Clearly, the Canada Health Act is not the proper place to regulate matters such as behavioural therapy services which fall under provincial jurisdiction.

Finally, even if such an amendment were made to the Canada Health Act, it is not certain that it would actually achieve its objective. While the act places conditions on payments to the provinces and territories and can reduce or withhold transfers if these are not met, it cannot dictate to a province or territory how to run its health care plan, much less still how to run the institutions.

There is no question that individuals affected by autism spectrum disorders and their families may experience tremendous worry and significant financial and social implications. We are not here to debate that. That is why the government recently announced the package of new initiatives on autism spectrum disorders.

These initiatives are consistent with the federal roles and responsibilities in the health sector and there is no intrusion in provincial jurisdiction. The focus is on research, surveillance and information dissemination.

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Ms. Penny Priddy (Surrey North, NDP):
Mr. Speaker, the bill introduced by the member for Charlottetown has been troubling many of us who know people with autism and who have talked to the families of children and adults with autism. The member's bill contains a number of factors that need to be considered.

We do know that for many parents of children, teenagers or adults with autism, it is an autism spectrum disorder. This is not something where when someone brings a baby home from the hospital, a physician can say that the child has autism. The diagnosis may be early or it may be at the age of three, at the age of five or it may only be when the child starts school. However, that is fairly unusual when we look at the kinds of disabilities that we see with children, teenagers and into adulthood.

What we do know is that we are seeing increasing numbers of children with autism and the federal government does have a role to play in consultation with parents.

I have talked to parents about the incredible frustration of finding supports for their child and then, once having found them, not being able to afford them or literally bankrupting families. When I say bankrupting, I mean they are selling their homes and their possessions to finance the treatments which, a good percentage of the time when initiated and administered early enough, are successful.

The other devastating thing for families is that the services are so displaced that families move from places they have lived all their lives, or their families before them, into perhaps an urban area because it is the only place they can find somebody who is trained in either Lovaas or intense behavioural intervention.

The lives of most families are emotionally, physically and financially disrupted and often bankrupted by these circumstances. The other thing we need to look at when we look at the supports for people with autism is that this is lifelong. Even when we can initiate support early, the individual will perhaps always require some kind of lifelong support. Those supports are not only for children aged 3, 5 and 12, they are also for teenagers. What happens after they leave high school? How do we support an adult who is at some stage in that autism spectrum disorder, perhaps at a stage where they need a significant amount of support in their adult lives?

I certainly do not disagree with what the previous member said about creating national standards for autism treatment, about the need for more research, actually an oversight mechanism to monitor what is becoming a crisis in many parts of our country, and that we need to provide increased funding for autism research, part of which has been spoken to by the federal government.

However, there is no question that families need financial support. They cannot afford all the things their children are going to need. However, I would question whether opening the Canada Health Act is the best way to do it. However, they should be covered medically for their expenses. They cannot afford it. We would not expect somebody whose child has spina bifida or some other kind of neurological disorder to cover the treatment expenses, nor should we be expecting these parents to cover the treatment expenses and ongoing expenses that their child, teenager and adult might incur.

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I will be interested to hear the member speak more about how he believes opening up the Canada Health Act would actually make a difference and whether he has looked at other ways that individual provinces could provide that kind of service.

I want to see a national standard of treatment so that people do not need to move from Prince Edward Island to Alberta or from British Columbia to Alberta, which many people have done in order to receive support for their child with autism. In point of fact, some people who have worked with us in a previous government had to do exactly that with their young son. They moved from British Columbia to Alberta in order to receive the kind of treatment that their child needed.

We cannot have that because it is a piecemeal approach. We do not have a piecemeal approach with other neurological disorders. We do not have a piecemeal approach if one's child, as I say, is born with spina bifida or some other kind of neurological damage or trauma. We do not tell them that this kind of surgery is only available in New Brunswick and not in Manitoba. We tell them that there is a reasonable standard across the country for the kind of support that they need.

Our goal is to have a national standard of treatment that is available to all parents of children, teens and adults with autism. I will be most interested to hear the mover of the motion speak more about all of the options he looked at in terms of funding and the availability of funding as he looked at opening up the Canada Health Act.

However, we absolutely support covering the expenses of those parents. They should not bankrupt themselves in order to provide for their child.
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Mr. Dean Del Mastro (Peterborough, CPC): previous intervention
Mr. Speaker, I thank the House for the opportunity to participate in the debate on Bill C-304.

The title of the bill is a national strategy for the treatment of autism act. However, what the title does not make clear is the fact that the bill is calling for an amendment to the Canada Health Act.

I will take this opportunity to address why the concerns raised by the hon. member should not be addressed under the Canada Health Act. Although the care for individuals with autism and their families is of great concern to the government, the Canada Health Act is, in my opinion, the wrong instrument to achieve this objective.

The Canada Health Act sets out the broad principles under which provincial plans are expected to operate. The act establishes certain criteria that provincial plans must meet in order to qualify for their full share of federal health transfer payments. Federal transfer payments may be reduced or withheld if a province does not meet the criteria and conditions of the act.

These criteria are the cornerstones of Canada's health care system. They are as follows: reasonable access to medically required hospital and physician services, unimpeded by charges at the point of service or other barriers; comprehensive coverage for medically required services; universality of insured coverage for all provincial residents on equal terms and conditions; portability of benefits within Canada and abroad; and public administration of the health insurance plan on a non-profit basis.

In addition to the above criteria, the conditions of the act require that the provinces provide information as required by the federal minister and give appropriate recognition to federal contributions toward health care services in order to qualify for federal cash contributions.

The act also discourages the application of extra billing, or user charges, through automatic dollar for dollar reductions or withholding of federal cash contributions to a province or territory that permits such direct charges to patients. In fact, the fear that user charges and extra billing would erode accessibility to needed medical care was a major impetus in the development of the act.

The Canada Health Act was enacted to protect the fundamental principles of our publicly financed, comprehensive, portable and universally accessible health insurance system. I think everyone would agree that these are laudable objectives.

Our system of national health insurance, or Medicare as it is popularly known, is close to the hearts of Canadians and something too precious to tamper with. Canadians support the five principles of the Canada Health Act and feel that Medicare is a defining feature of Canada. Time and time again, polls demonstrate high support for Medicare.

If adopted, the amendments presented by my hon. colleague in this bill would affect the definition of insured services under the act. This means that if Bill C-304 is passed by the House, the provinces and territories will be required to provide, on an insured basis to all of their residents, behavioural therapy treatment for individuals with autism spectrum disorder. This is not the purpose of the Canada Health Act. I want to emphasize that the Canada Health Act was not meant to address issues such as behavioural treatment for autism spectrum disorder.

Introduced in 1984, the Canada Health Act brings together previous legislation, the Hospital Insurance and Diagnostic Services Act, 1957 and the Medical Care Act, 1966, to ensure that all Canadians have prepaid access to medically necessary hospital and physician services without financial or other barriers. The Canada Health Act references insured services and medical necessity, but does not define specific services for specific illnesses or conditions.

Insured health services under the Canada Health Act are defined as medically required/necessary physician services, hospital services and surgical dental services when a hospital is required. Hospital services considered to be medically necessary are outlined in the act and include, among others, such services as nursing, the use of operating rooms and drugs administered in hospitals.

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Services provided by other health care practitioners outside a hospital are not considered to be insured health services under the act. This includes intensive behavioural therapy services for autism spectrum disorder since these services are generally provided outside hospitals by non-physicians. These services are considered to be additional benefits and may be insured at the discretion of the province or territory. They are not subject to the act's provisions.

The decision to provide services to individuals with autism spectrum disorder as part of a package of insured health services should be left to the provinces and territories. Each jurisdiction has mechanisms in place to examine the insured status of health services.

Provincial and territorial ministers of health consult with the members of the medical profession to determine which services are medically necessary and should be covered by their plans. They are then determined by physicians at the point of service.

Such consultations have proven to be an effective method of ensuring that Canadians receive appropriate medical care. Clearly, the Canada Health Act is not the proper place to regulate matters such as behavioural therapy services, which properly fall under the provincial jurisdiction and are better handled at that level.

We also have to recognize that even if the Canada Health Act were the appropriate place for such a provision, it probably would not achieve its objective. The act places conditions on payments to the provinces and territories and can reduce or withhold transfers if these are not met. It cannot dictate to a province or territory how to run its health care plan.

The federal government recognizes that the provinces and territories have the primary responsibility for the organization and delivery of health care services and that they require sufficient flexibility to operate and administer their health care insurance plans in accordance with their specific needs and situations.

To date, this approach has served us well and there does not see to be any reason to change it at this time. This is why the flexibility inherent in the Canada Health Act has always been one of its strengths. Since the enactment of the act in 1984, the federal government has always attempted to work with the provinces to make the act a viable piece of legislation. It could be dangerous to tamper with the provisions of the act when they have received such wholehearted support.

This does not mean the federal government has no interest in the issue of autism spectrum disorder. Quite the contrary. As demonstrated by the announcement on November 21 of the five new initiatives aimed at laying the foundation for a national strategy on autism spectrum disorder, Canada's new government is clearly committed to helping individuals with autism and their families. However, while autism spectrum disorder and treatments for the disorder are serious concerns, the Canada Health Act is not the appropriate vehicle to address these issues.

The proposal put forward by my hon. colleague is commendable, however, I cannot support the bill. The proposed amendment is inconsistent with the purpose and intent of the Canada Health Act.

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[Translation]
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Mr. Brian Murphy (Moncton—Riverview—Dieppe, Lib.):
Mr. Speaker, I am pleased to say a few words on Bill C-304, An Act to provide for the development of a national strategy for the treatment of autism and to amend the Canada Health Act.

First, I would like to congratulate the hon. member for Charlottetown for the work done in this House on this bill.

[English]

Bill C-304 is a very important bill, as we can see from the debate on it, although a private member's bill may well work toward defining and differentiating different parties views of who will be left behind and who will not.

I am very pleased to rise and offer my support to Bill C-304, as it provides a national strategy, in law, for the treatment of autism.

The bill incorporates three main provision.

First, we are asking the Minister of Health to convene a conference involving the ten provincial and territorial health ministers to discuss the important issue and begin crafting a national strategy for the treatment of autism.

Second, we are asking the Minister of Health to table a formal strategy for the treatment of autism before the end of 2007.

Third, the bill asks that the Canada Health Act be amended to include applied behaviour analysis, ABA, and intensive behavioural intervention, IBI, as medically necessary for required services.

These measures are considered provisions designed to address a very real health problem in our country, one that affects thousands of Canadian families, no less detrimental than the diagnosis of terminal cancer or any other maladies that affect Canadians in general.

Let me tell members about a real life situation in my province of New Brunswick. I know a couple who have three children. They are seven, five and three years old. The first two of these children were diagnosed with autism. One of the children did not speak until he was three and a half years old. He had been very aggressive and he had many odd self-stimulatory behaviours. The parents did not know how to cope with the problem. He was described by a pediatric neurologist as severely autistic. The second child appeared to be less severely autistic, but she did not learn to speak until she was three years old, did not interact with her peers and seemed withdrawn from the outside world.

When the diagnosis was made some time ago, the discussion centred around appropriate treatment. Unfortunately, ABA was just in its infancy with respect to recommended treatment in the province of New Brunswick. There was no funding available and no professional help available.

These two very fine people, Charlotte and Luigi Rocca, read books. She retired from her law practice and devoted herself to her two autistic children. Through ABA and the expenditure of hundreds of thousands of dollars over the years, the results are astounding. These two children, to use one example of their achievements, at the grade two level lead the class now in their reading skills in English. They are involved in soccer and tae kwan do, not exactly sports that require retreat from the madding crowd around us. They are two very well developed, normal children. However, this did not happen with the help of the New Brunswick medical care system or the Canadian national Health Act.

ASD is a complex of potentially devastating problem for parents such as the Roccas. It affects people's ability to communicate, form relationships and interact with their environment. Within the spectrum there are specific diagnoses: pervasive development disorders, Rett syndrome, Asperger syndrome and child development disorder.

Symptoms can vary widely. Some who suffer from ASD are capable of leading normal, healthy, happy, productive lives. Many more, however, require extensive treatment to mitigate or compensate for unresponsive, uncommunicative and sometimes violent and self-destructive behaviour.

After a diagnosis, if children receive treatment early enough, typically before the age of six, and intensively enough, typically 30 to 40 hours per week, studies have shown that up to 50% can recover to the point of being indistinguishable from their peers. Even those who do not recover completely can show great improvement.

The debate is over. ABA and IBI treatments work. Both are designed to teach autism sufferers how to function in the world. When they are employed, the results can be dramatic and encouraging.

Until recently our understanding of both the incidence and special costs of autism was fairly primitive. However, the most recent, reliable information suggests that as many as one in 167 Canadian children suffer from some form of ASD.

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We also know there is no cure and that there are financial burdens borne by families mostly in this country. The treatments can be as high as $60,000 a year. It is an extraordinary load to ask average Canadian parents who are victimized by this disorder to carry for even a short period of time, but the evidence is clear that the money spent on the treatment is effective and we can do something about it by making it a national health question. What can parliamentarians do to help lighten the load? They can do as the hon. member for Charlottetown has done in proposing this bill.

The courts have already rejected the argument that governments share a responsibility to treat autism and there are other constitutional issues to consider. How far should the federal government go on a health issue that properly falls within provincial jurisdiction? This has been referred to by my colleagues. However, the member for Charlottetown and I believe that the House has a moral responsibility to do everything it can. Make no mistake, we can do a lot. The Canada Health Act comes from Parliament.

Currently, medicare does not provide for the treatment of autism. Without sufficient public health care coverage, families will continue to mortgage their homes, extend their lines of credit or even bankrupt themselves as they desperately search for ways to pay for the cost of treatment. Many who run out of options will simply have no choice but to select treatment on the basis of affordability rather than clinical need.

How is that different than an American system of medical care delivery? How is it different to say that if parents have money they can get ABA or IBI, the treatment necessary to make their children performing members and integrated into society. The treatment works. It is very expensive and it should be afforded under any national health care scheme.

The act is not asking that much. It is asking, first, that the Minister of Health convene his counterparts, the ministers of health throughout the provinces and territories. In my province of New Brunswick the minister of health is very open to this suggestion.

The second suggests that the Minister of Health, who may be well on the road to doing this, posits and strategizes a national strategy to combat autism. While this may have been done outside the confines of this place, we think the bill before us, presented by the hon. member for Charlottetown, is the appropriate way to ensure that it is done in a proper manner.

It is not fair, equal or just. Protecting all of the citizens of Canada from crippling illnesses that financially burden families unfairly and end up in treatment of maladies different throughout the provinces and different according to one's means could not have been the vision of Tommy Douglas. This could not have been the vision of those who have modified the health acts across this country over the last 40 years.

Beyond this, there is a big difference in the availability of treatment across Canadian provinces, as we have just indicated. In Alberta, for example, children have full access. In Ontario, kids have access up to a certain age. In other provinces, such as in my province of New Brunswick, it is simply not available except perhaps through means tested social services or welfare programs.

Again I ask you, Mr. Speaker, and all members of the House: Is that fair, particularly when we have the Canada Health Act to help us develop new policies and programs that will benefit our most vulnerable citizens? Clearly, we must acknowledge that provincial health care plans are just that, provincial. We must respect the division of powers between federal and provincial levels of government, but that does not mean that we should abrogate our responsibility as parliamentarians within the constitutional framework.

Again, Bill C-304 is a noble effort to deliver a national health care strategy for the treatment of autism and to treat all Canadians afflicted by this in a fair and equal manner.

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next intervention previous intervention [Table of Contents]

Hon. Shawn Murphy (Charlottetown, Lib.): previous intervention
Mr. Speaker, as the previous speakers have indicated, this is an extremely important issue, and I would suggest it is a raging issue right across the country. The prevalence of autism is extremely high and seems to be rising. The cause remains unknown, but we all know that early diagnosis and intervention is so important.

Let us make it absolutely clear to everyone in this room and everyone watching these proceedings that this is a health issue. That train has left the station; no one in this House is prepared to debate that issue.

However, autism is not treated as a health issue. Many provinces treat autism in the social services envelope. It is subject to a means test; people are told they will get money if they do not have any money. It is not treated in the same way as other health issues, such as cancer and heart problems. It is totally inconsistent from one province to another province. In some provinces it is a small amount of money from the social services envelope. Other provinces have more progressive plans that provide ABA and IBI treatment. While they are not totally accepted, they are the generally accepted treatment modalities for this particular problem.

We are talking of what I classify as orphans in the health system. It cries out for a response from the federal government, but also from the provincial governments. I suggest the provincial governments would certainly be willing to talk to the federal government and come forward with a combined response.

Let me be absolutely clear that this will happen. Whether it happens with Bill C-304 or a future bill, it is going to happen.

If parliamentarians in the House of Commons are not prepared to deal with it, there is another body that will deal with it and that is the courts. Someone is going to bring it to court and the judge is going to ask, “Is it a health issue?” Yes. “Is this the accepted modality of treating the health issue?” Yes. Then that judge is going to say, “I am not prepared to discriminate between someone with this particular problem and someone with cancer”, and the judge will order the provinces to pay for it.

I would ask the members of this assembly to be bold and courageous and do the right thing. I urge them to pass this legislation before we are dragged into the courts kicking and screaming.

There will be people who will stand up, and some have already, and give all kinds of excuses. One member said earlier that it is a provincial issue. I find that somewhat hypocritical. It is a provincial issue, but the federal government has a responsibility.

Only about 40 minutes ago we passed a private member's motion. The government members all stood up and voted for it. I will read the motion:

That, in the opinion of the House, the Minister of Health should continue to work collaboratively with Statistics Canada, the provincial and territorial cancer registries, and key stakeholders towards the ultimate goal of creating uniform national standards and guidelines for the surveillance of all malignant and benign brain tumours, including data collection, analysis and reporting.

That is a cancer issue. I would suggest that is a provincial issue if we accept the arguments of the members across. That is only an excuse.

I would suggest that the people of Canada are watching us on this particular issue. Just last week George Bush, who represents a country that does not have a public health system, passed a bill and voted a billion dollars on this particular issue. I would hope that we would not fall behind George Bush when dealing with this particular issue.

On this very important issue I urge everyone to do the right thing and support Bill C-304.

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next intervention previous intervention [Table of Contents]

The Deputy Speaker: previous intervention next intervention
The question is on the motion. Is it the pleasure of the House to adopt the motion?

Some hon. members: Agreed.

Some hon. members: No.

The Deputy Speaker: All those in favour of the motion will please say yea.

Some hon. members: Yea.

The Deputy Speaker: All those opposed will please say nay.

Some hon. members: Nay.

The Deputy Speaker: In my opinion the yeas have it.

And five or more members having risen:

The Deputy Speaker: Pursuant to Standing Order 93, the division stands deferred until Wednesday, February 21, 2007 immediately before the time provided for private members' business.

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