[FEAT BC Admin]

In this topic area, discussion is about the fight to secure Government funding for your A.B.A. treatment program. It is also the place to talk about your thoughts and ideas about how to establish new Government programs specifically designed for autism treatment.

This is the place to hear input from parents who have fought for funding and won, as well as those who have fought for funding and would like to share their horror stories. There is a tendency to not share success stories once funding is secured. Please fight that tendency. By sharing our experience, we all become stronger.

 

---

—-By FEAT BC (Freeman) on Saturday, January 3, 1998 – 03:16 pm:

-Hi everyone!

These are some things to think about in your dealings with government to help you to obtain support for your child’s Autism Treatment Program. These are my personal opinions and do not represent those of FEAT of BC or any other organization.

Many of these observations are based on my personal experiences (and I believe it poetic justice to help every parent avoid being systematically abused by their social worker the way I was).

Good luck to everyone! (Let’s all pull back the curtain on the Wizard of OZ).

Sabrina

 

---

How To Fight for Funding for Autism Treatment and Appropriate School Placement

1. Establish a Paper Trail

Always take notes, documenting major points of all conversations with government and school officials.

This includes casual, in person conversations with social workers as well as ALL telephone conversations. All key points of discussion must be written down in your notes including the date and time of the discussion. This includes what was agreed upon, as well as what was not agreed upon.

Then the notes should be used to write a letter recapping the substance and content of the conversation. This letter must then be mailed or faxed to the person with whom you had the conversation. In addition, a copy must be kept in your file (see section on the icci game).

Why?

It is important to formalize the interaction between you and Government officials. In addition, everyone is put on notice that they must closely adhere to their responsibilities, regulations and laws., Furthermore, they must then consider the paper trail you have created. This lets everyone know that the interaction can become public and that any abuses of power and authority can be formally appealed and/or publicized.

In other words, they canit use discretion unfairly under the cloak of secrecy.

2. Submit all Requests in Writing

All your requests for your child must be submitted formally in writing with a copy included in your file and a copy, if necessary, sent to their immediate superiors.

3. Set Deadlines for Action

All formal requests for action must have a reasonable deadline set for that action. If no action or response is received by the deadline you have set (two weeks for example), then you will interpret the lack of response as a formal declination (a formal NO) of your requests.

Why Set Deadlines?

When bureaucrats do not want to do something, they will stall by ignoring you and your request. (As an aside, in the study of the bureaucracy, this is known as ithe power to do nothingi). They can string you along for years. When you have determined that the person you are interacting with is not inclined to help you or is not dealing in good faith, then you must take the initiative and formally label his/her behavior as obstructionist and de facto as a declination (a NO to your requests). This allows you to move to the next level of authority on your timetable to present your case. This takes the power to do nothing away from the bureaucrat with whom you are dealing. Simple stated, a bureaucrat who stalls and does nothing becomes irrelevant (use your invisible spray) and you move on to the next level of authority.

How to icci?

A cc. is a copy of your letter sent to someone other than the person you are writing. You put the cc. at the bottom left-hand corner of your letter followed by 2 spaces and the name of the person or people to whom you want to send a copy of the letter.

Who to icci to?

Sometimes it is best not to icci at all, especially in the early stages of the relationship (for example, your first letter to a social worker requesting assistance). This gives them the opportunity to do the right thing and does not present you as an overly combative person. When you start to run into problems, it is a good idea to send the icci to the 2 immediate superiors of the person you are having problems with. We do not recommend icciing all the way up the chain of command, since you want to give them a chance to solve the problem at the local level.

Why send a icci copy?

The reason for playing the icci game is that you want your interactions with the official to be known to his superior and possibly to other organizations so that 1) their action or inaction becomes a matter of record and 2) the individual knows he is being monitored. This helps minimize abuses of power and authority and helps encourage the official to meet their obligations and do the right thing.

What is the sequence of letters?

Find out the chain of command of the particular bureaucracy you are battling.

TOP

Minister
Deputy Minister
Children’s Ministry’s local region chain of command, all the way down to the District Supervisor
and Social Worker
Contacts can be found at the government directory: http://www.dir.gov.bc.ca/

BOTTOM

Start at the bottom and climb. At the Regional Operating Officer (ROO) level (once you have been declined) you have to decide whether to jump up to the top, threaten and then go to the media, or both. A word of wisdom: DO NOT BLUFF. If you are not willing to go all the way, they will ‘smell’ this. You must be prepared to take it right up to the Minister and beyond.

Documentation from Experts:

In your arsenal to fight for your child, it is wise to get his/her pediatrician and/or psychiatrist to write a letter on your childis behalf. In addition, any other experts who know your child and are sympathetic to what you are trying to do should become involved.

When to hire a lawyer?

If money is not an issue, you can hire a lawyer when you get to the area manager level. Make sure that you have a paper trail so the lawyer has something to work with. Also, have the lawyer give F.E.A.T. of B.C. a call, and we will send him/her information that will help.

If money is an issue (as it is for most of us running autism treatment programs), you might want to hire a lawyer once you have been turned down by the Minister.

How to hire a lawyer?

The type of lawyer needed is a litigator, or trial lawyer. S/he does not need to be an expert in autism, or special needs; s/he needs to be experienced in suing governments, and enjoys being in court. Word of mouth is a good way to find a lawyer.

Topic

[Andrew Kavchak]

Urgent Update from Ottawa!

As many of you are aware, the Hon. Shawn Murphy tabled Bill C-304, a Private Members' Bill, in the House of Commons in 2006. This Bill, named "National Strategy for the Treatment of Autism Act" is critical to our cause as it would not only include autism treatment in Medicare, but would also require the Federal Minister of Health to develop a National Autism Strategy in consultation with the provinces and table the plan in the House of Commons.

Where is the Bill at? What can you do to help?

For a Bill to become law it must be tabled in the House of Commons (First Reading), debated at Second Reading, studied by a Committee, and then voted on and passed following Third Reading. Then it would go through the same thing in the Senate and then get the Royal Assent from the Governor-General. A Private Members' Bill is entitled to two hours of debate at the Second Reading stage. The second hour of debate was held late in the day on February 14, 2007. The vote on the Bill did not take place afterwards as the procedures the House follows is to delay votes and group them together so that more MPs will be present.

Next: the Bill will be the subject of a vote next Wednesday, February 21, 2007 (subject to the usual change without notice), on whether to refer it to the next stage in the approval process, namely, whether or not to refer it to a Committee (probably the Standing Health Committee). The vote will be one where each MP who is present will have their vote recorded in the Hansard, (as opposed to the shouting of "yeah" or "nay" where you can't tell who voted which way).

If the majority of voting MPs vote on Wed. Feb. 21 to refer the Bill to the Committee Stage (also known as "Reporting Stage"), then the Bill continues to live another day. However, if the majority of voting MPs vote against it, the Bill will be dead. Finished. History.

It appears that the Liberals and NDP are willing to support Bill C-304 being referred to Committee. However, the Bloc Quebecois, and a majority of Conservatives (probably 99%) are against it. Whereas the Conservatives were willing to support Motion M-172 to create a National Autism Strategy a few months ago, the Motion is not law and not binding. This Bill C-304 would force the government to put words into action.

What should the autism community do in the critical next few days? What can you do to help promote our common interests?

Probably the best thing our community could do is to contact backbench Conservative MPs and lobby them to vote in favour of referring the matter to the Committee stage. Please contact your MP and any others that you have time to contact and ask them to support Bill C-304 and at least give it a chance to be studied by the Committee. The contact information for all MPs is available from http://www.parl.gc.ca

Please spread the word. Time is of the essence. Please take a moment to send your MP and others a message. Below is a same that you can use. Thank you.

Dear XXX, MP:

Re: Support for Bill C-304 Autism Strategy Bill

I am writing to urge you to vote in support of Bill C-304 when the Bill is subject to a vote in the House of Commons. Bill C-304, the "National Strategy for the Treatment of Autism Act" is of critical importance to families with members who suffer from autism. The Centres for Disease Control in the U.S. just recently reported that the prevalence rates of Autism Spectrum Disorders have increased to 1 in 150. By any standard this is a national public health crisis. Yet, not one province offers the core healthcare treatment for autism under Medicare and there is no National Autism Strategy to deal with this growing epidemic. The government has recently made announcements of a National Cancer Strategy, National Heart Health Strategy, National Spinal Cord Rehabilitation Strategy, etc. Although the federal government announced some autism consultation initiatives in November 2006 and supported a motion for a National Autism Strategy in December 2006, these are non-binding and largely symbolic window dressing. Words are not enough. We need action. Please vote to refer Bill C-304 to the next stage in the approval process and let the Committee examine the Bill and do its work. Please urge your fellow MPs to support the Bill. Thank you.

[Andrew Kavchak]

House of Commons
Wednesday, February 14, 2007.
Hansard Transcript

It being 6:23 p.m., the House will now proceed to the consideration of private members' business as listed on today's order paper.

* * *

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.

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.

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.

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.

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.

Mr. Dean Del Mastro (Peterborough, CPC):

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.

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.

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.

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.

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.

Hon. Shawn Murphy (Charlottetown, Lib.):

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.

The Deputy Speaker:

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.

[Andrew Kavchak]

The vote on Bill C-304 will likely take place this evening (late afternoon BC time). Please take a moment to send an email to your MP and ask that they vote in favour of it. Thank you!

____________________________

Projected Order of Business

(subject to change without notice)

Wednesday, February 14, 2007

5:30 p.m.

DEFERRED RECORDED DIVISIONS

PRIVATE MEMBERS' BUSINESS

C-304 — Mr. Murphy (Charlottetown) — National Strategy for the Treatment of Autism Act — Second reading (resuming debate)

Length of speeches, pursuant to Standing Order 95(1):

All Members — 10 minutes maximum.

Member moving motion — 5-minute right of reply to conclude the debate.

Debate — 1 hour remaining, pursuant to Standing Order 93(1).

Voting — at the expiry of the time provided for debate, pursuant to Standing Order 93(1).

[Andrew Kavchak]

And the "Courage in Public Policy Award" goes to…Federal Health Minister Tony Clement. But wait a minute! Is this the same Minister who claims that autism treatment is provincial? Why is it that contributing to the "fighting" against one disease is possible for the federal government but contributing to the treatment of autism would encroach on provincial jurisdiction and is therefore not possible because of this government's "respect" for jurisdictional competencies?

From the Hansard….
______________________________

House of Commons
February 13, 2007
Statements by Members

Courage in Public Policy Award

Mr. Steven Fletcher (Charleswood—St. James—Assiniboia, CPC):

Mr. Speaker, I wish to offer my congratulations to one of my colleagues, the hon. member for Parry Sound—Muskoka who is also the Minister of Health.

On Saturday, February 3, 2007 the minister received the very first Courage in Public Policy Award from the Canadian Cancer Society and the National Cancer Institute of Canada to recognize his leadership in the creation of the Canadian Partnership Against Cancer Initiative.

The Canadian Cancer Society started to advocate for a coordinated approach to fight cancer in 1999. Year after year the previous Liberal government steadfastly refused. This Conservative government has once again shown leadership and got the job done.

Dr. Barbara Whylie, CEO of the Canadian Cancer Society said that the Minister of Health's “singular dedication was instrumental in seeing this project to fruition”.

As the Parliamentary Secretary to the Minister of Health I am very proud to be associated with such an effective minister and government.
____________________________

[Andrew Kavchak]

The second hour of debate on the Hon. Shawn Murphy's autism Bill will take place on Valentine's Day.

From Hon. Shawn Murphy's website: http://www.shawnmurphymp.ca/
_________________________________________________
Bill C-304 to be debated 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.

[Andrew Kavchak]

Hi Folks,
Reversal of Rett Syndrome in mice and calls for autism to be recognized as an epidemic and national emergency…
___________________
Rett syndrome reversed in mice
The Calgary Sun

Feb 9, 2007

The Calgary Sun
Dateline: WASHINGTON
Source: BY REUTERS

Scientists searching for a way to treat the rare but severe childhood neurological disorder Rett syndrome have reversed the disease in mice, raising hopes for doing the same in people.

In a study appearing yesterday in the journal Science, researchers led by Adrian Bird of the University of Edinburgh switched on a gene called MECP2 in mice with the equivalent of Rett syndrome to make symptoms vanish.

The surprising results contradicted the notion damage to the brain caused by the disease, which occurs nearly exclusively in girls, is permanent.

Children with Rett syndrome commonly show autistic-like behaviours in the early stages. It destroys speech, normal movement and functional hand use, and causes breathing difficulties, susceptibility to epileptic fits and tremors like those in Parkinson's disease.

________________

National Autism Association Renews Call for CDC to Declare Autism a National Emergency; CDC Study Finds One in 150 Children Now Diagnosed with Autism

Feb 9, 2007

NIXA, Mo., Feb. 9 /PRNewswire-USNewswire/ — The National Autism Association (NAA) today is asking again for the Centers for Disease Control and Prevention (CDC) to treat the epidemic of autism among children as a national emergency following the release of the agency's latest study claiming a new diagnosis rate of one in 150.

"While it's nice that the CDC has shared these findings with the public, they must move forward with a plan to treat the children suffering with autism now," said NAA board chair Claire Bothwell. "This agency has yet to answer the question, 'Why are so many children sick?' If this were an epidemic of practically any other disease among the children of this country, they would have long since investigated how it could have happened and made earnest attempts to find treatments."

Citing the impossibility of an epidemic occurring as a result of genetics alone, the organization is repeating earlier requests for federally-funded research into relevant environmental triggers, including vaccines and the mercury-containing vaccine preservative thimerosal. "After this latest study, the CDC cannot continue to sweep unpopular factors in this epidemic under the rug, including vaccines and thimerosal. The future of a sizeable portion of an entire generation of children is at risk. Without effective treatments, taxpayers will soon bear the burden of care, estimated at over $3 million per individual," commented Ms. Bothwell.

NAA has been critical of the CDC's research emphasis on counting affected children, rather than addressing causation. With the passage of the Combating Autism Act in December of last year, Congress has called for research into environmental factors including vaccines and their components. "This latest study underscores the need for this type of research to take top priority. Perhaps this time, the CDC's own numbers will finally drive the point home that this is an emergency and should be treated as such," commented Ann Brasher, NAA vice president. "The one in 150 children they counted need research that can help them recover and reach their full potential in life. Time is of the essence."

For more information, visit http://www.nationalautism.org

Contact:
Wendy Fournier, NAA (Portsmouth, RI) 401-632-7523
Rita Shreffler, NAA (Nixa, MO) 401-632-6452
Lori McIlwain, NAA (Cary, NC) 919-468-6455

SOURCE National Autism Association

[Andrew Kavchak]

And the next time a federal politician tells you that a National Autism Strategy is not possible because of jurisdiction and that healthcare is provincial, please consider showing them this…
____________________

National strategy to target spinal cord injuries

The Ottawa Citizen
Feb 2, 2007
Page: A1 / Front
By: Juliet O'Neill

Prime Minister Stephen Harper is set to announce a national strategy today aimed at improving spinal cord injury research and rehabilitation.

Against the backdrop of a gymnasium at the Ottawa Hospital rehabilitation centre, he will be accompanied by Rick Hansen, perhaps the country's best-known advocate for people with spinal cord injuries.

Mr. Hansen, based in Richmond, B.C., is deeply committed to creating a community of experts who can collaborate on breakthroughs in spinal cord research.

Mr. Harper's announcement is expected to echo the national cancer strategy he and Health Minister Tony Clement announced in November.

That plan dedicated federal funds over five years to establish a co-ordinating centre for the latest information on cancer prevention, diagnosis and treatment.

The aim of such strategies is to improve information sharing, to establish national clinical practice guidelines, to improve research and patient care. It may be linked to initiatives already launched through Mr. Hansen's spinal cord injury network, which has received some federal funds in the past.

The network is a group of clinicians and scientists and includes a spinal cord injury registry aimed at collecting data from individuals that can be pooled to improve research and treatment. Mr. Hansen estimates 41,000 Canadians are affected by spinal cord injuries.

Paralysed from the waist down in a car crash when he was 15 years old, Mr. Hansen was an Olympic wheelchair athlete who is famed for undertaking a gruelling 40,000-kilometre "Man in Motion" fundraising tour of four continents in his wheelchair in 1985.

He raised $26 million on the tour and has raised another $178 million through the Rick Hansen Foundation, according to the foundation website.

[Andrew Kavchak]

Meanwhile, in central Canada…
______________________

TORONTO — Parents of autistic children are in a Toronto court today, suing the province for more than a billion dollars.

Publication: BNW Broadcast News
Feb 2, 2007

TORONTO — Parents of autistic children are in a Toronto court today, suing the province for more than a (b) billion dollars.

The five groups of parents have filed a 1.25 (b) billion dollar lawsuit to try to force the government to pay for treatments that otherwise comes out of their pockets.

They say the government isn't providing enough autism therapy services in its schools and it's forcing them to go outside the system for help.

Paying for private autism therapy in Ontario can cost parents up to 80-thousand dollars a year.
_____________________
Funding boost for autism 'Band-Aid solution,' family says

The Kingston Standard Whig
Feb 2, 2007
By: Maria Babbage

The Ontario government's recent funding boost for autistic children is just a stop-gap solution to a much larger problem, says a family involved in a lawsuit alleging discrimination against their autistic children.

"It's just another Band-Aid solution," Taline Sagharian said yesterday outside the courtroom where a motion by the government and school boards to strike down the lawsuit was being heard.

"For the eight years since this program has been in place – and the government has had eight years to get this right – all we've heard repeatedly are these Band-Aid solutions."

Sagharian and her husband are among five families who have launched the $1.25-billion lawsuit, alleging seven school boards and the government are denying their autistic children a public education by failing to provide access to specialized treatment in school.

The families are being forced to choose between sending their autistic children to school or paying for the costly Intensive Behavioural Intervention therapy that is essential to their children's development – a therapy that isn't provided in public schools.

____________________________

[Andrew Kavchak]

Meanwhile, over at the other end of the country…
___________________________________

Parents of autistic children allege discrimination under support program; Human rights hearing told province's disability support program needlessly punitive and falls short of delivering services it promised to families

The Guardian(Charlottetown)
Jan 31, 2007
By: Ron Ryder

Families of children with autism ripped into the
province's disability support program at a provincial human rights
hearing Tuesday, saying the plan discriminates against the disabled
families it was set up to assist.

Parents Vic and Colleen Douse and Brad and Dale Wonnacott told a panel chaired by Lorraine Thompson that the DSP is needlessly punitive and falls short of delivering the services it promised to families.

Vic Douse said the screening tools and the income test system set up for claims seem to make it impossible to reach even the DSP theoretical ceiling of $3,000 per month in financial support.

"It's the halving and the halving and the halving," he said under questioning from the claimants' lawyer, Karen Campbell.

Vic Douse said his 13-year-old daughter Jewel is autistic and has been prescribed 40 hours per week of applied behavioural analysis as a therapy. But he said he has been unable to get government to either approve or pay for the therapy prescribed by his daughter's physician.

"It's like telling someone that they need 40 chemotherapy treatments, but they'll only get 20," he said. "Then you say government will only pay for 10. If you don't get better it's not a surprise."

Colleen Douse said they were faced with a dilemma that saw government willing to pay $10 per hour for a therapist to work with their daughter at home, while the provincial education system was paying $22 per hour for people with the same skills.

The Douses said they initially thought there was no sense in earning extra money since their income was used to reduce Jewel's DSP benefits. But when even their top payment fell far short of needs, they changed their minds and decided to have Vic work as many overtime hours as possible while the family stopped participating in the DSP.

In all, four families are challenging the DSP and in particular the FIM questionnaire used to determine the type and amount of help provided to a disabled person. FIM, which originally stood for functional independence measure, is a trademarked assessment tool adopted by the provincial Department of Social Services when it began the DSP in 2001.

The test was developed as a tool for rehabilitation nursing.

Parents questioned whether the questionnaire was too focused on issues like physical mobility to be of use in determining support for people whose disabilities are cognitive.

"I'm not saying the DSP may not have helped somebody," Brad Wonnacott said. "It just doesn't seem to be helping us or people with autism."

Dale Wonnacott said she thinks the FIM tool gave an exaggerated reading of the independence of her 10-year-old son, Benjamin.

"The score doesn't reflect Benjamin as a person with autism at all," she said. "Yes, he can walk. But he'd walk right out into traffic." Lawyer Robert MacNevin, representing the government, told the rights panel the issue to be decided is a legal one. He didn't question the parents about the personal and financial difficulties of raising and caring for their kids.

Instead, he questioned what involvement they may have had in the development or assessment of the disability support program and what the basis was for questions about the FIM questionnaire.

"Do you have any formal training or education that would allow you to make an assessment of an evaluation tool?" he asked Colleen Douse. "Are you aware of how many assessment tools were assessed by the province before the FIM tool was selected?"

The hearing continues today with parents Carolyn Bateman and Margaret Murphy scheduled to testify.

rryder@theguardian.pe.ca

Lawyers Karen Campbell, right, and Jacqueline O'Keefe talk prior to the start of a human rights hearing in Charlottetown Tuesday. Campbell represents four families alleging discrimination under the province's disability support program. O'Keefe represents the P.E.I. Human Rights Commission. Guardian photo by Heather Taweel

[Andrew Kavchak]

Hi Folks,
I have not seen the Sunday Citizen yet, but I just got a call from a colleague who told me that at page B7 there is an article where a number of journalists are asked to predict what are the big issues that can be expected in the coming session of Parliament that begins tomorrow. Apparently, in the article CTV's Mike Duffy predicts that Finance Minister Flaherty's March budget will have something for autism. I hope his crystal ball works.
Cheers!
Andrew
(Ottawa)

[Author]

Replies