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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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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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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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.

Wednesday, February 14, 2007

Conor's Valentine Card for Mom and Dad



No Hallmark Valentine from Conor. He made his own for Mom and Dad!

Today's Autism Debate & Autism Awareness

The debate on Charlottetown MP Shawn Murphy's private member's autism motion is scheduled to proceed today. The motion calls, as part of a national autism strategy, for amendments to the Canada Health Act in an effort to ensure availability of autism treatment services across Canada. Yesterday I speculated pessimistically on the outcome of the motion. It is inconceivable to me that the Bloc Quebecois or the Harper Conservatives would allow the motion to pass. Nonetheless Mr. Murphy is doing a great service to autistic persons and their families and caregivers. Each such debate in the House of Commons draws attention to and raises awareness of the realities of autism. Autism is and remains, despite the fantastic accomplishments of some savants and high functioning autistic persons a debilitating disorder which requires well informed, serious efforts to treat, educate and provide residential care for persons with autism.

Thank you Mr. Murphy.

Tuesday, February 13, 2007

Bill C-304 to be debate in the House of Commons Wednesday

Charlottetown Liberal MP Shawn Murphy's private member's bill will be debated in the House of Commons tomorrow. The bill calls for development of a national autism strategy for autism treatment and amendment of the Canada Health Act to ensure autism treatment availability across Canada. This motion is different from the Scott-Stoffer motion as amended by the Conservative government in that it calls for amendment of the CHA which will almost assuredly doom it to defeat when it comes to a vote. The Bloc Quebecois members will vote against it unanimously because, in the "thinking" of the Bloquistes it is more important to argue about constitutional boundaries then take definitive steps to help children with a debilitating disorder like autism. Most Conservative members will vote the same way for similar reasons. Regardless of the outcome it will be interesting to listen to the debate.

The telecast is 5:30 EST and for those of us fortunate enough to live in the Atlantic time zone 6:30.

http://www.shawnmurphymp.ca/?page=medianews&action=showInfo&itemID=203

Bill C-304 to be debate in the House of Commons Wednesday


OTTAWA – MP Shawn Murphy’s Private Member’s 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, will be up for its last hour of debate at second reading in the House of Commons tomorrow at 5:30pm EST (6:30 Atlantic). The debate will be carried live by CPAC.

If passed, C-304 would require the Government to table a national strategy to streamline the availability of treatment for autism spectrum disorder across the country.

Mr. Murphy is available to speak to the Media about his Private Members Bill upon request. Following the debate, transcripts of his speech will also be available.

Full Classroom Inclusion for All is Discriminatory

Yude Henteleff QC is a distinguished lawyer and human rights expert whose detailed resume would represent a life time of accomplishment for several individuals. He is a founding member of a prominent law firm, has been legal counsel for Autism and Learning Disability Associations, been active as a mediator in human rights disputes, served on the Canadian Human Rights Commission and named to the Order of Canada. In November, 2004 he presented a paper at the Canadian Association for Community Living National Summit on Inclusive Education, Ottawa in which he asked "why full inclusion is being advanced in certain areas as the only way to effectively meet the diverse needs of all children with special needs." Mr. Henteleff provided a number of reasons for the emphasis on full classroom inclusion - including government cost consciousness. Full classroom inclusion is cheaper than providing a continuum of choices to accommodate all the needs of individual students with various disabilities. Mr. Henteleff also reviewed Supreme Court of Canada decisions in Law, Granovsky, Mercier and Eaton and concluded that "Imposing a standard, namely that the inclusive classroom meets all needs, is a perception not based on reality and is stereotypical. In other words, the standard takes the position that one environment meets the needs of all special needs children. By its very nature, such a standard is discriminatory,"

- Henteleff, Y. (2004). The fully inclusive classroom is only one of the right ways to meet the best interests of the special needs child. Paper presented at the CACL National Summit on
Inclusive Education, Ottawa, Ontario.


As the parent of a profoundly autistic 11 year old son I concur with Mr. Henteleff's conclusion. Conor is environmentally sensitive with severe communication deficits. Fortunately for my son when he returned from school with self inflicted bite marks on his wrists and hands the school and district officials were conscientious and cooperative in working out an accommodation to meet his needs. He has been educated in a separate quiet location and brought in to the mainstream classroom for limited periods of defined activity to interact with other students who also visit his area for interactive periods such as "reading buddies". Some other New Brunswick students with disabilities who might learn better in other or a mixed environment have not always been so fortunate.

As New Brunswick continues its review of inclusive education the advocates of the philosophy of full mainstream classroom inclusion for all continue their very aggressive lobbying to maintain the dominance of their philosophy over an evidence based accommodation of the needs of individual students with disabilities. The New Brunswick Association for Community Living performs many good deeds for persons with disabilities. It is also well financed and well connected in our province and advocates relentlessly for the view that all children benefit from full mainstream classroom inclusion. They have been the "partner and stakeholder of choice" for the Department of Education over recent decades. When the Mackay Inclusion Review development workshop days for teachers were held recently it was conducted as a partnership between the Department and the NBACL. Requests by the Autism Society to participate as an equal partner were ignored. The keynote speaker was Gordon Porter the distinguished Chair of the New Brunswick Human Rights Commission who was himself a driving force behind the adoption in New Brunswick education circles of the philosophy of full mainstream classroom inclusion for all. The NBACL hands out awards to teachers who exemplify "best practices" in inclusive education - meaning practices consistent with the NBACL view of full classroom inclusion. At present, the NBACL is aggressively lobbying politicians to protect the status quo of the full classroom inclusion model.

I know that the NBACL leaders are good people with good intentions. I ask them to consider my son's experience and those of other profoundly autistic children and the possibility that the aggressive promotion of the mainstream clasroom for all philosophy has created a presumption in favour of the mainstream classroom that is at odds with reality, is discriminatory and in some cases harmful to the child. Parents and educators should have choices available as they work out the best ways to accommodate and educate children with a diverse range of disabilities and needs. They should not be forced into an environment which is unhealthy and counter productive for them.

Monday, February 12, 2007

"Common Sense Prevails on Autism"

New Brunswick's Telegraph-Journal has written an excellent editorial in which it commends the confirmation by Education Minister Lamrock that the Graham government will be training 100 TA's and teachers per year for the next four years. The article reflects a good understanding by the Telegraph-Journal editorial writers of why this commitment is necessary. The training commitment is critically important to ensure a real education for New Brunswick students with autism. That is more than enough reason for me to feel thankful this morning. Minister Lamrock's communication with the Autism Society New Brunswick under difficult circumstances is also a big plus.

But the Telegraph-Journal editorial is itself a reason for celebration. Over the past 7-8 years many in New Brunswick's autism community have struggled, to provide for their children's special needs and to obtain decent services for autistic persons of all ages. We have also sought to raise public awareness about the realities of autism. Without true public understanding and awareness of autism the specific steps taken will be undermined. The T-J article is strong evidence that the struggle to raise autism awareness in New Brunswick is succeeding.

Common sense prevails on autism


Published Monday February 12th, 2007
Appeared on page A4

The plight of New Brunswickers with autism and the difficulties encountered by their families have received a lot of ink in the Telegraph-Journal over the past decade. What was once considered an irremediable condition, which might result in institutionalization, is now known to include a broad range of symptoms; and educational techniques for reaching and teaching autistic children have become more common and more refined.

Education Minister Kelly Lamrock's announcement that the province will train and hire 400 new resource and methods teachers to work with autistic students represents the greatest political commitment yet to dealing with the issue. The government hopes to add 100 autism resource teachers a year until the quota is filled.

Autism is one of the clearest examples of a developmental disorder that can be ameliorated through specific educational methods. But the right timing and training are crucial. As New Brunswick parents have become more aware of their autistic children's needs, they have grown more adamant that the province take the necessary steps to ensure autistic students receive fair access to education.

Given the particular methods and expertise required to teach autistic children, it makes sense to designate a substantial number of resource teachers for this purpose. Autism spectrum disorder affects one in 166 children. Until the full complement of 400 resources teachers is reached, demand for the special instructors will likely be high.

The details of the Graham government's five-year plan for public education will not be released until spring. But the speed with which Kelly Lamrock has committed to living up to this key campaign pledge is promising. If New Brunswick is to grow "from the worst to the first" in Canadian education, schools will need far more resources to help special needs students.

The broad outlines of Lamrock's education strategy include "giving teachers the liberty to try innovative methods of learning" and rewarding those who are successful, and intervening earlier with special needs students and exceptional learners. The government's autism announcement does both, and we hope it proves up to the challenge. Autistic students deserve the same opportunities to learn as their peers.

http://www.canadaeast.com/ce2/docroot/article.php?articleID=101144

Sunday, February 11, 2007

I Can Read With My Eyes Shut by Conor (and Dr. Seuss)



I sat at the computer a few minutes ago, the first one up and awake in the house, when I heard Conor in the kitchen reading I Can Read With My Eyes Shut by Dr. Seuss. I have mentioned before Conor's love of Dr. Seuss and his increasing ability to read and will probably do so again. For me it is remarkable that my soon to be 11 year old profoundly autistic son is able to,and wants to, read Dr. Seuss. He gets his Seuss books out and reads them on his own initiative with no prompting or cajoling. Conor's reading skills were developed through structured Applied Behavior Analysis (ABA) intervention. While The Cat in the Hat and I Can Read With My Eyes Shut may not be the reading fare of most 11 year olds, it represents once unthinkable progress for Conor. It didn't happen without effort or without ABA. But Now Conor can enjoy the playful genius of Theodor Seuss Geisel, Dr. Seuss. And I can enjoy the sound of Conor reading aloud first thing in the morning.

Friday, February 09, 2007

Thank You Minister Lamrock

Honourable Kelly Lamrock
Minister of Education

Dear Honourable Minister

I wish to thank you for confirming your government's commitment to provide UNB-CEL Autism Intervention Training for 100 Teacher's Aides and Resource Teachers per year over the next four years. I also appreciate the professionalism you displayed in clearing up the confusion which had arisen in this matter.

The Autism Society New Brunswick receives calls from parents of autistic children from Saint John to Fredericton to Edumundston and all points in between about the need for autism trained TA's and Resource Teachers to work with their autistic school children. Unfortunately, the current lack of autism trained personnel still results in New Brunswick students with autism being sent home as unmanageable, in one reported instance in handcuffs. Your government's commitment is a huge step forward in ensuring that autistic children will receive a real education.

I thank you, Premier Graham and your government for this contribution to the education and well being of New Brunswick school children with autism.

Respectfully,

Harold Doherty

Blogging Beautiful New Brunswick







I am very happy to live in New Brunswick. For many reasons.

The fight for advances for autistic children and adults is a difficult one at the best of times but civility, as is keeping with life in New Brunswick, almost always prevails. Another valuable part of living in New Brunswick is the sheer beauty of our province. The New Brunswick Blog Roll lists several photo sites which focus on New Brunswick's beauty and they are always worth taking time to view. In no particular order, some of these sites which I visit are:

Bay of Fundy Blog http://bayoffundy.blogspot.com/

Photos: Varying Seasons http://varyingseasons.blogspot.com/

New Brunswick Photos http://photosofnb.blogspot.com/

Oromocto Watershed http://oromoctowatershed.blogspot.com/

ERIC CARR photography http://eric-carr-photography.blogspot.com/

Nature Tales and Camera Trails http://naturetales.blogspot.com/

A few of my amateur photos from the Fredericton area, Nashwaaksis actually, are set out above. (Click to enlarge)

Thursday, February 08, 2007

Premier Shawn Graham's Broken Autism Promise

Yesterday I read with concern a report in the Telegraph-Journal in which Education Minister Kelly Lamrock announced that the Liberal government will provide autism training to 100 Autism Support Workers/Teachers Aides who work with autistic children over the course of the government's mandate and that the training might be provided by Department personnel. I received a call last evening from another journalist who had spoken with Mr. Lamrock and confirmed that information. This makes a great Public Relations headline for the Graham government but actually means that Premier Graham will not be honoring a commitment he made during the election campaign when he stated in two separate emails to Autism Society New Brunswick representatives that:

"A new Liberal government will:

1. Integrate services for young children and their families by enhancing and expanding the Early Childhood Initiatives Program to ensure a smooth transition into public school for children identified as at risk or those with special needs, such as autism.

2. Provide UNB-CEL autism training for 100 additional teaching assistants and Methods and Resource teachers each year for four years."

There is a real need for trained TA/Autism Support Workers. The last estimate received by the Autism Society New Brunswick indicated that there are approximately 1000 autistic students in New Brunswick schools. Many of those students need the help of Teachers Aides/Assistants, some for safety reasons alone. For these students to actually learn they need the help of aides who are specially trained to assist them. With attrition and other factors the 100 per year for 4 years would probably not have met the need completely. It was a compromise figure but 100 trained personnel over 4 years will not begin to meet the need.

The decision to train within the Department instead of through the UNB-CEL Autism Intervention Training program is also a serious departure from Mr. Graham's promise. The ASNB has received information that this in house training is already under way. The Department does not have the expertise within the Department to provide any where near the quality of training necessary to for Autism Support Workers to properly function as Teachers Aides to children with autism. Nor do they have a proper program established for that purpose. The training provided will be provided by Department autism consultants whose pay checks are signed by the government and whose careers are dependent on government. The pressures and priorities of government will have a negative influence on the training received by the TA's. This will result in a serious dilution of the learning experience of autistic children.

As parents we will have to make do with the reality of poorly trained or non-existent TA's for autistic children. We will have to continue to find our own means of working to improve our children's education. We have to because we have no choice.

Unlike Mr. Graham we can not abandon our commitment to our autistic children.

Wednesday, February 07, 2007

ABA Based Autism Pre-School Program Successful in Manilus New York

Parents in Onondaga County New York are pleased with their children's progress in an ABA based pre-school program for autistic children. Applied Behavior Analysis has been subjected to hundreds of academic studies, and anecdotal reports, that indicate substantial gains for autistic children but still detractors look for some way to discredit ABA. Every success story like this one in Onondaga County New York makes it harder for those detractors to make their case.

http://www.9wsyr.com/news/local/story.aspx?content_id=c2c6a3a3-71eb-4984-8091-25c25afa94cd


Success with New Pre-K Autism Program

Last Update: Feb 7, 2007 7:59 PM


Manlius (WSYR-TV) - A new program, geared toward helping children with autism, is getting off the ground in Onondaga County.

Called Enable, and it's offered at a pre-school in Manlius.

Zachary Freeman looks like your typical 3 ½ year old. About a year ago, he was diagnosed with autism.

Zachary's mom, Janie, says her son has a hard time communicating and is nervous around other children. But since he started pre-school at shining stars daycare, he's come out of his shell.

“In the last month, I've noticed more joint attention, more spontaneous language, more interaction with his brother and us and it's really wonderful. We're thrilled,” she says.

Zachary's learning thanks to a special curriculum called applied behavior analysis, or ABA. It works to improve skills and behaviors in autistic children through a very structured learning environment.

Education Director Phil Grajko says, "Our job is to take that methodology, do it as intensely as we can in the 2 to 3 years that we have children so that they're successful in a typical kindergarten classroom."

To most people, this looks like a shopping cart full of toys, but here it's a shopping cart full of tools used to teach special needs children how to communicate.

Zachary spends five hours each weekday at the center. Thanks to county and state funding, it doesn't cost a thing.

Janie Freeman says, "They have one in Rome and Cortland, but we didn't feel that comfortable putting him on a bus that far, so we're thrilled this opened up.”

This is something they've wanted since Zachary was diagnosed. He’ll stay here until he's 5 and then hopefully start kindergarten somewhere else with other kids his own age.

The classroom is full now and there's a waiting list. The school is applying for more state aid so it can hopefully expand the program next year.

What Does Throne Speech Autism Commitment Mean?

Yesterday I commented that the Graham government's throne speech contained good news for students with autism because the speech contained a commitment to autism specific training for TA's. Opposition leader Shawn Graham had committed during the campaign to training 100 TA's and Resource teachers per year for the next 4 years via the UNB-CEL Autism Intervention Training program. This morning's Telegraph Journal APPEARED to indicate a major watering down of that commitment though indicating in a story carried on page A3 , that Education Minister Lamrock was committing to 100 TA's over the course of his government's mandate. The Minister also appeared to be wavering over whether the training would be done by the UNB-CEL folks, widely respected by the NB Autism Community and across Canada or on the cheap by Department of Education civil servants. The difference is substantial.


- Telegraph Journal, February 7, 2007, Joshua Errett Minister promises 100 autism support workers in schools



There are literally hundreds of students with autism in New Brunswick schools. Many are effectively excluded from receiving a real education because they do not have the autism trained personnel working with them to assist their learning by specialized methodologies such as Applied Behavior Analysis. They have been betrayed by New Brunswick politicians before. In the past an interdepartmental (Education, Family Services, Health) committee (the IDC) was established to examine autism services in New Brunswick. The IDC took almost two years to conclude that autism specific services were virtually non-existent. It issued a report and recommendations which sat unread by the lead Minister on the IDC, for almost a full year and most of its recommendations were never fulfilled and are now seriously outdated. Autistic children do not need any more political betrayals. Hopefully, the new Liberal government is not about to water down its commitment to a fraction of what Mr. Graham promised.

On May 4, 2004 a Fredericton Liberal MLA stood in front of the Centennial Building with protesting parents of autistic school children and said ""We can do better. We know the options,... "We know that ABA treatment works. Premier Bernard Lord says he has to make tough choices? I say he made bad choices and cut taxes. If you can get up every day and deal with this, you deserve the Liberals' support."

- Daily Gleaner, May 4, 2004, Joel Kane, Parents march to protest tight funding for autism

I hope that Education Minister Lamrock remembers his words from May 4, 2004, remembers Mr. Grahams campaign commitment and honors that commitment fully.

Tuesday, February 06, 2007

Good Autism News in New Brunswick Throne Speech



Premier Graham's first throne speech today contained good news for students with autism in New Brunswick schools. During the election campaign Mr. Graham made a very specific promise to provide autism training at UNB-CEL autism intervention program to 100 TA's and Resource teachers. The wait for confirmation of that commitment has been nerve racking but the Throne Speech contains good news in the form of a plan which will be announced this session to increase the number of trained autism support workers in the system. This is of course a very general statement but it means a lot to have such a commitment made in the throne speech. Parents will remain vigilant. We have no choice, we have been let down before and our children can not afford more setbacks on their learning journeys. But today is a good day for New Brunswick school students with autism - a very good day.

http://www.gnb.ca/cnb/Promos/Throne-2007/speech-e.asp

"Your government earned the trust of New Brunswickers by outlining the Charter for Change which will form the basis for many of the initiatives that will be introduced in the coming months. The cornerstones of the Charter for Change are the Three Es – education, energy and economic development.

Your government will work with New Brunswick's teachers, District Education Councils and academic institutions to build the best education system in Canada. This year, your government will release a new Plan for Education. The Minister of Education has been consulting with teachers, District Education Councils, parents and students on this action plan of new ideas and programs to begin transforming our schools.

This year, your government will begin its commitment to implement the MacKay Report recommendations for improving our inclusive education system and meeting the diverse needs of all our students . The Minister of Education will appear before the Standing Committee on Education in order to initiate the discussion on how to ensure that each child in New Brunswick has the chance to reach his or her full potential.

Your government will further demonstrate its commitment to inclusive education by ensuring that new hope is given to children with autism. A plan will be announced this session to increase the number of trained autism support workers in the system.

Your government understands the importance of a school to the community around it. Your government will move forward on a new community schools policy that will enhance the quality of education in rural and urban communities alike by transforming schools into true centres of learning for the whole community.

Truly innovative change will be driven by teachers and your government will announce new measures to support our best teachers and principals in being leaders in innovative education.

During the upcoming session, your government will unveil a new accountability agenda for improving results for early literacy and exceptional learners.

The Departments of Education and Family and Community Services will work jointly and in partnership with stakeholders to develop a long-term plan for child care and early learning."

The Autism Vaccine Link - A Dangerous Urban Myth

The vaccine-autism debate has been raging for years despite a lack of scientific evidence to support the belief in a link between thimerosal, the mercury based preservative once widely used in vaccines, and increased rates of autism. In New Brunswick a couple of years ago I received some very heated responses when I posted on an autism discussion newsgroup a British Medical Journal article which called into question the existence of any vaccine autism link. But the belief continues on in the media fueled by Robert Kennedy Jr. and David Kirby. Arthur Caplan is a bioethics professor at the University of Pennsylvania and he has written an excellent opinion piece in the Philadelphia Inquirer/Centre Daily.Com in which he describes the vaccine causes autism link as an urban myth and also describes the horrible consequences that have ensued from this urban legend. Many parents fearing the autism link refuse to vaccinate their children against deadly diseases putting them and all of us at risk of an outbreak of these diseases.



"Fact: No link of vaccine, autism


Arthur Caplan

is the Emanuel and Robert Hart Professor of Bioethics at the University of Pennsylvania, where he co-directs the Ethics and Vaccines Project

What must it be like to spend a huge amount of time every waking day trying to change public health practice - only to find out that you were wrong?

That is precisely what has happened to the proponents of the theory that mercury in vaccines - contained in the preservative thimerosal, which once was used (and is used no longer) in vaccines - is responsible for a nearly 20-year explosion in autism and other neurological disorders among American children.

This urban legend has had very real - and terrible - consequences. It has led, and continues to lead, many parents to avoid getting their kids and themselves vaccinated against life-threatening diseases. The failure to vaccinate has caused many preventable deaths and avoidable hospitalizations from measles, whooping cough, diphtheria, flu, hepatitis and meningitis. And fear of vaccines puts each one of us at risk that we, our children or grandchildren will become part of a deadly outbreak triggered by someone whose parents avoided getting their child vaccinated for fear of autism.

Recent research on many fronts in medicine and science has nailed the coffin shut on the mercury-in-vaccines-

causes-autism hypothesis. The connection is just not there. Perhaps the key fact, which has garnered little attention, is that thimerosal has been removed from vaccines in this and other countries for many years, with no obvious impact on the incidence of autism. The most recent data point toward a correlation with nothing at all to do with vaccines: the increasing age at which people (particularly men) have children seems to be associated with an increase in autism and other neurological problems.

Still, some of the most fervent anti-vaccine critics cannot let go. They continue to tell devastated parents of children with autism that vaccines are to blame. Others are still out on the lecture circuit peddling books and articles that bash vaccines and invoke mercury as a problem. Still others pepper the Internet with the false message that vaccines and autism do go hand in hand - it is just that the government, or the pharmaceutical companies, or organized medicine, or all of them, are keeping the truth from us all.

Less than two years ago, Robert Kennedy Jr. published an article in Salon.com alleging that the government knew of and covered up the autism-vaccines connection. Thimerosal was, Kennedy told large audiences and many media reporters, to blame.

Kennedy was hardly alone in fingering vaccines as the cause of the epidemic of autism affecting American children. David Kirby's 2005 best-selling book, Evidence of Harm, and many other articles, newsletters and advocacy blogs fanned the flames. Some continue to do so.

Proponents of the thimerosal/mercury-causes-

autism theory have had a powerful impact on public opinion. When one of my students recently conducted a pilot study of attitudes about the new cervical-cancer vaccine, fears about autism were prominent among the reasons many respondents gave for being wary of the vaccine. Friends of mine continue to tell me of parents in Lafayette Hill, Voorhees, Greenville and Downingtown who won't have their children vaccinated because of the risk of autism. States continue to allow parents to opt out of vaccines on "philosophical" grounds - perhaps the only arena in American public life where "secular philosophy" is given legal standing in public policy. And even some young health-care workers report that they don't get important vaccines that would protect them, their families and their vulnerable patients against death because of worries about autism and vaccines.

Science and medicine have not bought the thimerosal/mercury-autism link. For years the Centers for Disease Control and Prevention, the American Academy of Pediatrics, the Children's Hospital of Philadelphia's Vaccine Education Center, the National Academy of Sciences, the Food and Drug Administration, and countless other prestigious organizations and scientists have said the data do not support mercury in vaccines as the cause of autism.

Now, with the mercury long out of vaccines, what is there left to say? Why won't the slandering of vaccines as the cause of autism stop?

There has always been a great deal of antipathy toward vaccines - in part because vaccines do have a tiny chance of causing death or other serious side-effects. Parents who have been through that hell have a hard time hearing or sending any other message other than "vaccines are bad." And those who made careers out of peddling the vaccine-autism link - in the face of a lack of evidence - have really been motivated by a distrust of medicine, science, government and experts, a distrust that has little to do with scientific studies or expert opinions. Even government officials have never really cared enough about public health to do much to counteract the incredible damage the autism-vaccine proponents have done. That is not acceptable.

Our nation is spending a fortune on plans to cope with the prospect of a bioterror attack. State, city and federal agencies are trying to figure a plan if avian flu mutates into a form in which it can start killing people. Hospital officials are worrying over how to cut back on preventable deaths in our hospitals and nursing homes. Those in charge of keeping disease transmission in hospitals, schools and public spaces to a minimum are fretting over what steps to take. The answer to every one of these challenges involves - vaccines.

This nation's future, its national security, the safety of its health-care institutions, and the safety of its citizens depends upon vaccination. It is way past time that message got heard by parents, teachers, nurses, doctors, hospital administrators, the media and politicians. If there has been a more harmful urban legend circulating in our society than the vaccine-autism link, it is hard to know what it might be. At a time when vaccines may be our last best hope in facing some of the greatest challenges we and our children face, this legend needs to be put to rest. Vaccination, not vaccine-bashing, is what this nation needs.


http://www.centredaily.com/mld/centredaily/news/opinion/16630652.htm

Monday, February 05, 2007

Conor, Autism and ABA from Apple to Seuss




Conor was 2 1/2 years old and had NO effective speech; as in NO words at all with which to communicate. When he wanted something he would simply scream until we figured out what he wanted and provided it. An apple, one of his favorite foods, was always a good guess. Then I attended a lecture by Paul McDonnell, a clinical psychologist working with autistic children and professor emeritus (psychology). Paul described ABA and showed data charts and strategies for extinguishing problem behavior, teaching positive behaviors and elements of speech. That evening at home I tried ABA with Conor for the first time. When he screamed I showed him an apple but did not give it to him right away. I held the apple and kept repeating the first syllable until Conor, some 45 minutes later, finally said "ap". After an hour and a half Conor was able to say apple.

Since then Conor has received ABA intervention from a number of therapists, but not the 40 hours a week, between the ages of 2 and 5. Nonetheless his vocabulary and understanding of language today while still limited compared to others his age is light years ahead of where it was when we first worked with that apple. Above is a picture of Conor, with his mother, at the edge of the picture listening, while Conor reads aloud from the Cat in the Hat Comes Back by Dr. Seuss. (Dr. Seuss is his favorite writer by far).

Conor's diagnosis is Autism Disorder. His pediatrician's commentary describes him as profoundly autistic which he is. But ABA has helped him,and me, immeasurably. It has opened the world for him as language and reading does for all once acquired to any extent. And it has allowed me to communicate with my buddy. Both are priceless gifts. I thank Paul McDonnell for his many efforts on educating parents of autistic children in New Brunswick, the therapists that have worked with Conor and Dr. O. Ivar Lovaas for his incredible gift to autistic children and their parents.

Sunday, February 04, 2007

Conor and the Penny




Yesterday Conor was agitated and rubbing his nose. Because of a prior penny up the nose experience with Conor I checked but saw only a runny nose. He calmed down after wiping his nose clean and started watching some children's shows on television. Later the nose rubbing resumed so I looked again and this time saw a shiny edge very far up his left nostril. I packed up immediately and headed off to the Dr. Everett Chalmers Hospital emergency desk with Conor. Things went very smoothly. The hospital staff registered and attended to him promptly and the doctor who attended and removed the coin was sure handed, quick and slick. The coin was out in a flash.

I was very proud of Conor yesterday. He remained calm throughout. We call hospital visits "hospital adventures" and he seemed to enjoy all the sights of the hospital at least for a short visit. Upon being told of the problem, and that Conor was seriously autistic, hospital staff asked if more people would be needed to hold him if necessary but I declined. More people might have just upset Conor and he has always been well behaved on hospital adventures. Afterwards we headed for Zellers at Conor's request. Once there he went straight for the candy shelf and picked out a box of Scooby Doo candy. Dad was happy to pick up the tab and get Conor home with the Scooby Doo and no penny up the nose.

Saturday, February 03, 2007

Aubrey's Journey: Emerging from autism



If you do a google blog search on autism you will find many blog sites hosted by high functioning autistic persons who view autism in a positive light and characterize efforts by parents and advocates for autism cures and treatments as oppression, breaches of their human rights. There are other autistic persons, such as some who appeared before the Canadian Senate, who are supportive of efforts to assist autistic children and adults in overcoming some of the deficits associated with their autism. The Albany Democrat-Herald reports the story of Aubrey, a young lady with Aspergers' Syndrome who benefited from early intervention and left many of her autism deficits behind. Aubrey's mother, D.L. Clarke, has written a book about her daughter's story and hosts a web site where parents and other interested persons can learn more:

http://www.aubreysjourney.com/


Emerging from autism

When Aubrey was born in 1992, she looked and acted like all other babies.

But as she grew older, she began walking on her tiptoes, she pitched tantrums and she screamed when her hands got dirty. She did not want to play with other children, and she was terrified of swings and teeter-totters.

Yet, Aubrey was intelligent and often appeared normal in unfamiliar situations.

Physicians assured Clarke that her daughter was normal. Clarke knew differently in her gut, but she did not want to accept the fact that her daughter might not be “perfect.”

In a book released Jan. 15 targeted to parents of children with behavior problems, Clarke discusses ways to seek a diagnosis for various disorders in children, and she explains how to keep hope alive and not to give up in dealing with situations no one seems to understand.

It was not until Aubrey was 3 years old that an early intervention team from the Linn-Benton-Lincoln ESD used the word autism to describe Aubrey’s behavior.

“That diagnosis opened a door of support that we didn’t have before,” Clarke said. “Gradually we found out she had Asperger’s Syndrome and not full-blown autism.”

Since then, through counseling, therapy and family encouragement, Aubrey has left many of her symptoms behind.

“She’s not cured, but she’s learned to cope and adapt,” she said. “Part of what helped is I encouraged her to get involved in activities. I treated her the same way as my other two children, and told her I expected her to learn and be independent.”

Aubrey is now 14 and a freshman in high school. She has entered talent shows, been part of a singing group and a dance team. She tutors elementary students at a Boys & Girls Club, and she wants to go to college and eventually have a family.

“I can’t imagine the consequences if I hadn’t kept on pushing,” Clarke said.

Signed copies can be ordered through her Web site: aubreysjourney.com.


http://www.dhonline.com/articles/2007/02/02/news/local/3loc08_autism.txt

Mr. Graham's Autism Promise Revisited

During the election campaign then opposition leader Shawn Graham made a very specific promise as set out in an email to Autism Society New Brunswick President Lila Barry. It was a commitment to provide UNB-CEL training for an additional 100 Teachers' Assistants and Methods and Resource teachers each year for the next four years. The commitment was not to have Education Department personnel train current TA's in house. It was to provide UNB-CEL Autism Intervention Training.

The UNB-CEL course originated in meetings of the steering committee which had been struck to establish the proposed UNB Autism Centre. The input of autism society representatives, education and psychology professors at UNB ,as well as the business acumen of the College of Extended Learning all contributed to the initial concept for the program. Since then the UNB-CEL personnel have worked together with government to provide training to preschool Autism Support Workers and to Clinical Supervisors working with them in the autism agencies. Some of those personnel have migrated into the education system. But the number of autism trained TA's and teachers working with New Brunswick's autistic student population is nowhere near sufficient to enable those students to receive a quality education, hence the efforts over several years from the Autism Society New Brunswick which resulted in Mr. Graham's autism training campaign pledge. While the ASNB remains hopeful that the pledge will be honored there have also been mixed signals received which indicate that student services professionals, and others, in the Department of Education have not yet abandoned their intentions of providing much lower quality in house training for TA's.

The commitment to provide UNB-CEL Autism training has long met resistance from some education department officials. When ASNB officials met with new Education Minister Lamrock we were presented with a list of 7 training options. One of those 7 options was the commitment made by Mr. Graham. The other 6 were a variety of other watered down options based to one extent or another on the provision of autism training to TA's by department personnel. Since then Minister Lamrock has reiterated his commitment to Mr. Graham's promise, subject to budgetary requirements. But we have also received information that the Department's in house autism training plans are going ahead.

What is wrong with providing autism training in-house rather than through the UNB-CEL course? Assurance of quality of training is the most important consideration. A teacher in a regular classroom has an education degree from a university. The TA's who in fact work one to one with autistic students have high school and maybe 1 or 2 years of post secondary education. They too require some credible training to ensure that autistic students receive a real education. The ASNB has always compromised by seeking to have these TA's receive UNB based training not demanding full teaching credentials. Now the cost conscious Department of Education is pushing for its own in house training in place of UNB's which is provided by a variety of academics with autism expertise and who are not subject to direction or pressure from Department officials while providing the training. Department officials who provide training lack the same degree of expertise in all the necessary aspects of autism and autism interventions and are subject to direction from their superiors in the Department.

There will likely be a budget soon in New Brunswick. It is also likely that there will be some UNB-CEL autism training budgeted for as promised by Mr. Graham. But the 4 year commitment was necessary to ensure that there are sufficient numbers of properly trained personnel working with autistic students in New Brunswick schools. The department cost saving strategy appears to be based on training as many TA's as possible in house now and providing them with on the job training while the first year of training is provided for some. Then, the Department will probably take the position that the remaining 3 years of the UNB-CEL autism training commitment are unnecessary.

I appreciate that my comments are speculative, that I am reading tea leaves, and that a mild breeze can scatter tea leaves in all directions. I hope I am wrong. I hope the Department of Education finally takes seriously the education of autistic school children instead of simply reacting to public pressure or looking for a cheap way out. Autistic children do not need, and can not afford, any further dilution of their education. They, like other children, deserve some properly trained assistance in their learning experiences. I have no doubt about the sincerity and commitment of the new Minister of Education. But as for those who report to the Minister? The future will tell.

From: Graham, Shawn (LEG)
Sent: Wednesday, September 06, 2006 2:37 PM
To: lila barry
Subject: Liberal Platform

Dear Ms. Barry:

Thank you for your letter and for sharing your concerns with me. In our Liberal election platform that will be released this week, we are committing to the implementation of the recommendations of the Interdepartmental Committee on Autism released in November 2001. Although we realize this document is now nearly five years old, it does provide a basis on which to develop, in partnership with the stakeholders, a strategy that will assist children with autism from early childhood and into adulthood.

As well, we will take two concrete steps to address the immediate needs of children with autism in two areas: a case management process and UNB-CEL autism training.

A new Liberal government will:

1. Integrate services for young children and their families by enhancing and expanding the Early Childhood Initiatives Program to ensure a smooth transition into public school for children identified as at risk or those with special needs, such as autism.


2. Provide UNB-CEL autism training for 100 additional teaching assistants and Methods and Resource teachers each year for four years.

I commend you and the members of the Autism Society of New Brunswick on your tireless advocacy on behalf of children with autism. You are truly making a difference in many lives. Please feel free to contact me at any time.

Yours truly,

Shawn Graham

Leader of the Official Opposition

Friday, February 02, 2007

Parents Sue Ontario Government for Autism Treatment

Once again, parents of autistic children in Canada are forced to go to court to seek government funded therapy for their children. If only governments would put as much effort and resources into providing therapy for autistic children and less into resisting their parents efforts to obtain a better life for their children.

http://www.cbc.ca/canada/toronto/story/2007/02/02/ontario-lawsuit.html

Parents sue Ontario for autism treatment
Last Updated: Friday, February 2, 2007 | 1:28 PM ET
CBC News

Parents of autistic children are appearing in a Toronto court Friday to try force the Ontario government to pay for their children's treatment.

The parents are currently being forced to pay for the therapy out of their own pockets, often at a cost of thousands of dollars.

Five families are part of the group that launched a $1.25-billion lawsuit. They claim that seven school boards and the government have discriminated against their children and denied them a public education by failing to provide access to specialized treatment in school.

David Baker, a lawyer representing the families, argued in court Thursday that families are being forced to choose between sending their autistic children to school or paying for costly intensive behavioural intervention therapy.

Private therapy costs between $30,000 and $80,000 a year for one child.
'Just another Band-Aid solution': parent

The lawsuit marks the latest battle between parents of autistic children and the province.

Last July, the Ontario Court of Appeal ruled the province does not have to pay for costly specialized autism treatment for children ages six and older.

Since the ruling, the government has said will provide funding to treat autistic children over six years of age if an assessment shows they are in need.

Two weeks ago, Ontario promised to boost spending on a program to provide therapy by $13 million, increasing total spending on autism to $115 million a year.

One parent involved in the lawsuit criticized the funding as "just another Band-Aid solution."

Opposition parties say the government has spent much less on autism programs than promised in the 2003 election campaign.

School for Autistic Children in New York

In New York a school for autistic kids is opening. The school will feature an evidence based, ABA approach, using discrete trial training and also utilizing elements of speech language therapy, occupational and physical therapy, PECS and some elements of TEACCH. The classrooms will be adapted with special computers, monitors and programs. This school appears to be an extension of a successful pre-school program offered by the same HeartShare school. This is an amazing development that is highly unlikely to ever occur in any school district in the Province of New Brunswick.

In New Brunswick over the past 30 years the education of all children has been dominated by a philosophy that dictates mainstream classroom inclusion for all students regardless of their disabilities or abilities. There are exceptions. Some districts and schools have cooperated with parents and allowed autistic children,particularly severely autistic children such as my son, to receive the greatest part of his learning in a separate area with visits from classmates for activities such as reading buddies and with Conor visiting the mainstream classroom for specific defined activities for limited periods of time. By and large though in New Brunswick's education system educators and parents are pressured to place all children in a mainstream classroom whether it is suitable for them or not.

At major events such as the teachers development workshop which was held to review the MacKay Inclusion review process the Department of Education partnered with the New Brunswick Association for Community Living which aggressively promotes the philosophy of mainstream classroom inclusion for all students. Requests by the Autism Society New Brunswick to participate as a partner in the workshop were rejected by the Department of Education notwithstanding the number of autistic children in New Brunswick schools and the severity of the challenges posed in educating them. The NBACL philosophy of total mainstream inclusion is also promoted by the presentation by that organization of awards to teachers who exemplify what the NBACL considers to be best inclusion practices. The mainstream classroom philosophy for all is also well represented by NBACL participation on the Premier's Council on the Status of Disabled Persons and in the New Brunswick Human Rights Commission whose current chair, Dr. Gordon Porter, was instrumental in the implementation of the mainstream classroom for all philosophy in New Brunswick schools and is touted as an expert on the inclusion of students with a disability into regular classes on the commission web site.

With such an entrenched mindset in favor of the mainstream classroom inclusion philosophy I am thankful that school and district educators have, at least to date, cooperated with us in creating an alternative learning arrangement for my son. In the big picture though the emphasis on classroom inclusion has kept many children in the mainstream classroom even when it is not suitable for them. It also makes it extremely unlikely that an option such as a school for autistic school children will ever see the light of day in the Province of New Brunswick.

http://tinyurl.com/27g8xf



New school for autistic kids

02/01/2007

You hear it again and again—the incidence of autism is on the rise. In fact, according to the latest statistics, 1 in 166 children are diagnosed with autism and reported cases are growing at a rate of 10-17 percent each year.

With all these children needing services, HeartShare Human Services of New York is proud to be responding to the needs of the community by opening its new HeartShare School. This program is for school-age children with autism and mental retardation from all five boroughs.

Located at St. Finbar’s School, 138 Bay 20th Street in Bensonhurst, children ages 5 through 14 are eligible for services.

Scheduled to open in February, this program is unique to Brooklyn in that it will primarily follow the Applied Behavior Analysis (ABA) approach with the emphasis on discreet trial learning. Some components of the TEACCH methodology and Picture Exchange Communication System will also be used.

Started at the urging of parents who had gone to NY State Senator Martin Golden to seek ABA-based educational services for their children, the program will have five classrooms, each structured with class-room style learning and speech, occupational and physical therapies.

Additionally, each classroom will have adapted computers, touch screen monitors and specialized program software that addresses the learning needs of children with disabilities.

“HeartShare has had a great deal of success teaching children with autism in our four pre-school programs,” noted President and CEO William R. Guarinello. “That is why parents turned to us to start a program for older children. There were no appropriate educational services in Brooklyn for many of these families.”

Golden stated, “I am excited that as a partner with HeartShare Human Services, the dreams of the parents who have approached me seeking the best educational opportunities for their autistic children right here in our community will come true. For too long, Brooklyn’s autistic community has been underserved despite the rising numbers of those diagnosed. In that notion, we are going to provide at St. Finbar’s School a state of the art school that is ready to teach the autistic children of our community. We have done a unique and important thing in the planning and establishment of this school. In doing so, we will make better the lives of many now and in the future, for through HeartShare, they will receive an excellent and solid education.”

When at full capacity, The HeartShare School will provide full-day educational services to 48 children. “We still have open placements,” said Carol Verdi, vice president of Educational Services at HeartShare.

“Children from all five boroughs are eligible, but must be on the Pending Needs list through the Central Base Support Team within the New York City Department of Education. HeartShare is excited about the opening of this new program to meet the needs of students in the community.

“Families have been an integral part of the planning process,” said Verdi, “and we will ensure that they remain involved as we move forward.”

For more information about The HeartShare School, contact HeartShare Human Services at 718-323-2877 or visit www.heartshare.org.

Thursday, February 01, 2007

The Blogger Has Been Blogged




Early this week I sat down for a coffee at the Second Cup with well known New Brunswick blogger, political activist and pain in the neck Charles LeBlanc. I arrived early and waited with my camera concealed below the table. As Charles approached I snapped the photo above. The Blogger has been blogged!!!

I met Charles a few years ago through my autism advocacy. Charles was already known as an ADHD activist who brought to public attention the issue of over prescription of Ritalin for New Brunswick school students. He also pitched in on behalf of autism, attending rallies, putting up posters and helping with our Christmas parade float on one cold, wet, windy day in Fredericton. His blogging is often over the top in style and substance and has been known to infuriate some. But Charles also raises issues that the main stream media are reluctant to feature. As CBC reporter Robert Jones pointed out in a segment which aired the night before commencement of Charles's trial on obstruction of justice charges arising out of the Atlantica conference protest, Charles blog site features pictures of the homeless and disadvantaged and brings their issues to public attention. Friends of mine in government tell me that many politicians and civil servants read Charles' blog site regularly. In Charles the poor and disadvantaged in New Brunswick have a voice by which they can speak to power and have their issues heard.

Well done Charles. Keep up the good work.

http://oldmaison.blogspot.com/