Wow! Federal NDP Replies to My Inquiry This Morning Re Negotiations to Include ABA for Autism under Medicare

I confess I was surprised  to get a same day response this evening from the federal NDP to my question this morning addressed to party leader Thomas Mulcair.  The federal NDP committed to continuing the efforts which they have in fact made over the years in Parliament towards creation of an EFFECTIVE national autism strategy.   

To Canada's  federal NDP and leader Thomas Mulcair I say thank you.

8:20 PM (9 minutes ago)

to me

Dear Mr. Doherty:

Thank you for providing such a helpful summary of your discussions with us on this important issue.

New Democrats have a proven record of working with the autism activist community toward increasing awareness and supports for those living with autism spectrum disorders. NDP MPs have, over many years, proposed bills and motions in Parliament toward the creation of an effective national autism strategy. We are committed to continuing that effort as government.

The success of any national autism strategy that includes medically recognized treatments such as Applied Behavioural Analysis and Intensive Behavioural Intervention, depends on the commitment and involvement of provincial and territorial, as well as federal governments. At the moment, for lack of federal leadership, the levels of support vary widely across the country.

Over the past decade, the Harper government has consciously chosen to abandon its leadership role in Canada’s health system and has turned its back on the federal-provincial-territorial cooperation necessary to maintain and improve our public system – including measures to better address autism needs. Stephen Harper has not only refused to renew the national health accord but has unilaterally cut billions of dollars from future provincial/territorial health transfers.

Under Tom Mulcair, an NDP government will live up to its national leadership role and move quickly to re-establish a collaborative working relationship with provincial and territorial governments. A New Democratic autism strategy would be forged within this renewed negotiation and would establish, with provincial and territorial cooperation, access to treatment across Canada.

Canada’s New Democrats | Le NPD du Canada

Ready for change | Ensemble pour le changement

www.ndp.ca

Canada's Autism Epidemic? To Start With We Have to Use American Numbers 1in 88 Children, 1 in 54 Boys

Canada Flag Photo by Harold L Doherty

The CDC in the US has released new numbers on the autism epidemic in the US.  It now estimates that 1in 88 children (1 in 54 boys) have an autism disorder.  There are no known, reliable estimates available for Canada which has not updated its autism estimates in several years.  The Harper government has not taken Canada's national autism crisis seriously preferring to hide behind constitutional walls and leave the availability of treatment to an autistic child to depend on which province his/her parents live in.  

A National Autism Symposium was cancelled once the Harper government became aware that serous autism advocates were planning to participate.  The symposium was rescheduled and the resulting symposium was a sham. Speakers and so called  "community representatives" were chosen who would not take an aggressive advocacy position on any autism issues.  

The speakers list even included persistent anti-ABA activist Dr. Laurent Mottron who believes that the idea of curing autism is nonsense.  Mottron's mentor and fellow anti-ABA, anti-autism cure activist Michelle Dawson was also in attendance. Causes of autism stressed the genetic bases of autism with no attention to possible environmental causes or triggers.  The prevalance rate of 1 in 165 advanced by Dr. Eric Fombonne at that 2006 symposium is still the only figure recognized by the Harper government and by the Autism Society Canada. 

With the release of the United States CDC estimate of 1 in 88 Autism Speaks has called for a serious response to the autism epidemic:

Autism Speaks called for the development of a national autism action plan that should include, among other elements:

• Increased funding for basic science uncovering the genetic underpinnings of autism;
• Increased funding for environmental research detecting the causes of autism;
• Accelerated funding and development of effective medicines and treatments;
• Commitment to a strategy where all children with autism from every background are diagnosed no later than18 months of age;
• Commitment to a National Training Corps to recruit more therapists and service providers, as well as specially trained teachers and teacher assistants;
• A strategy to address the growing needs of adults with autism, specifically around continuing education, employment, housing/residential living and community integration.

The Autism Speaks recommendations are solid and, hopefully, will be adopted in the United States.  In Canada we can not realistically expect a serious response along those lines from our current Federal government.  That has been clearly demonstrated over the past several years of Harper Conservative rule.

In terms of the prevalence rate though it is absurd to rely  on the outdated figure of 1 in 165.   In the absence of any credible, current estimates from Canadian government institutions or from federal autism advocacy groups, the US figure of 1in 88 should be taken as the best available estimate of Canada's autism rates. 

We must also continue the push for national Medicare coverage of effective ABA autism treatment, for continued, real autism research of causes and cures, and for the beginnings of a plan for adult autism employment opportunities and adult residential care and treatment facilities.  

The US has stepped up to the plate, again, in offering meaningful, honest information about the autism epidemic.  Canada has long suffered from a lack of will that has allowed our autism epidemic to become a national autism crisis.   We must begin now working toward the day when a new national government is elected that will take our autism crisis seriously. 

In the meantime we should abandon the ridiculously outdated autism estimate of 1 in 165 and use the American estimates: 1 in 88 children, 1 in 54 boys. 

Glenn Thibeault's REAL National Autism Strategy

In the past 36 hours I have criticized CASDA's claims to be advocating for a National Autism Strategy and to be presenting a unified national autism voice.  Lawrie Mawlam of CASDA, a conscientious and courteous individual with whom I have had the privilege of talking in recent months,  has taken some objection to my criticism and I thank her for expressing her opinions so forthrightly.   I hope though that CASDA will consider the criticisms of their efforts before rejecting them defensively.  I also ask CASDA, and any one else purporting to advocate for a National Autism Strategy to consider and support the private members bills of Sudbury MP Glenn Thibeault. The two bills express a clear and coherent National Autism Strategy that would be great benefit to autistic Canadians and their families and that is consistent with the efforts by many Canadians seeking a REAL National Autism Strategy for many years before CASDA and its constituent elements began seeking a national approach to autism.

I recommend that CASDA, Conservative MP Mike Lake,  and all others seeking a real and meaningful national autism strategy support, and encourage their members of Parliament to support, Glenn Thibeault's private member autism bills as described on Mr. Thibeault's site:

"THIBEAULT RE-INTRODUCES AUTISM LEGISLATION


2011 06 15


OTTAWA – Today MP Glenn Thibeault (Sudbury) re-introduced two Private member`s Bills designed to assist individuals diagnosed with autism spectrum disorders.


The first Bill would amend the Canada Health Act to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognised treatments for individuals living with autism spectrum disorders.


The second would create a National Strategy for individuals living with autism spectrum disorders, therefore ensuring that these individuals would receive the highest level of care, regardless of which region of Canada they live in.


“Far too many Canadians and their families are coping with autism spectrum disorders without adequate support from any level of government” said Thibeault. “Together, these two Bills would ensure that all Canadians, irrespective of where they live, have access to the most appropriate forms of care and extended health services.”

“With negotiations between the provinces and federal governments on the Canada Health Accord starting in 2014, I am calling on the Government to implement the provisions of these bills to ensure that individuals suffering from autism spectrum disorders are properly covered by the Accord.”

Autism spectrum disorders are a spectrum of psychological conditions, including autism and Asperger’s syndrome, which are characterised by an impairment of social interaction, restrictive interests and repeated behaviours. Currently, around 1 in 200 Canadians – representing roughly 190,000 Canadians - are estimated to have autism spectrum disorders. Incidence rates have been on the rise over the past decade, with the prevalence rate in children estimated to be 1 in 165.

-30-

For further information, please contact:

Alex Bushell, Parliamentary Assistant (Glenn Thibeault): 613-996-8962 or glenn.thibeault.a2@parl.gc.ca"

CASDA National Autism Strategy Is Not A REAL National Autism Strategy: It Does Not Help Canadian Autistic Children and Adults

In looking at the National Autism Strategy information from a CASDA (Canadian Autism Spectrum Disorders Alliance) conference held in Ottawa on June 8 2011, and which I have posted following this comment,  I see that there is the suggestion for expansion of tax relief for autism families. That is certainly a specific, concrete step that will help some families with autistic children. Beyond that though I don't, with all due respect, see anything being proposed to assist autistic children, regardless of where they live in Canada, to receive evidence based effective early intervention, yes that still means ABA, a real education and for the many who will require it, decent, autism specific residential care and treatment as adults.

Early autism intervention across Canada resulted from a wave of focused determined parents advocacy which began over a decade ago. It did not result from conferences of persons building careers in politics or charitable bureacracies or attending subsidized conferences in Banff or Ottawa. 

I recommend that this organization stop pretending and start getting serious about helping with early intervention, education, adult residential care and treatment for autistic Canadians. Sorry I if sound harsh but these types of conferences, with their timid agendas,  have accomplished nothing over the past 10 years. Pretending to help is worse than doing nothing at all. It creates the illusion that something is being done when that is not the case.

Conservative government MP Mike Lake, to his credit, did provide  links to parliamentary sites if you are interested in following autism bills introduced by Sudbury NDP MP Glenn Thibeault who has been a determined advocate for a real National Autism Strategy for several years.  My final comment is to recommend to Mr. Lake and other attendees at the CASDA conferences to fight for a real National Autism Stategy as Mr. Thibeault has done along with fellow NDP member Peter Stoffer and former Liberal MP Shawn Murphy.

"In 2007, Autism Canada spearheaded the Canadian Autism Spectrum Disorders Alliance (CASDA) and today sits on the Leadership Committee. On June 8, 2011, Laurie Mawlam, the Executive Director at Autism Canada, was in Ottawa with the others on the CASDA Leadership Committee advocating for a National Autism Strategy. Please find below the notes from that meeting, including the individuals the Leadership Committee met with and a synopsis of their conversations.

  

Connor Robinson, Canada Revenue Agency

• Broadening the interpretation of existing categories of eligible expenses under the Medical Expenses Tax Credit to include more expenses often faced by families with a child with an Autism Spectrum Disorder
• Adding Autism Spectrum Disorder-related expenses to the list if eligible expenses under the Medical Expenses Tax Credit
• Clarifying the rules and procedures of the audit process                    

Lisa Belzak, Epidemiologist, Public Health Agency of Canada 

• The development and design of a National Surveillance System for Developmental Disorders, including Autism Spectrum Disorders
• The creation of a nomination committee to create an advisory committee for the National Surveillance System
• The creation of an advisory committee for the National Surveillance System

Nathalie Gendron, Assistant Director, Institute of Neurosciences, Mental Health and Addiction, Canadian Institute of Health Research 

• The current levels of funding for research in Autism Spectrum Disorders
• New developments that are in the works that should be made public shortly

The Honourable Jim Munson, Senator, Ottawa-Rideau Canal 

• Raising awareness of Autism Spectrum Disorders among Senators and Members of Parliament
• The reintroduction of Senator Munson's bill honouring Autism Awareness Day 

The Honourable Mike Lake, Member of Parliament, Edmonton-Mill Woods-Beaumont 

• Reviewed outcome from meetings of the day
• Discussed Mike playing a role in reaching out to other MPs that have a family member with an ASD, to increase the base of support for a federal ASD agenda
• Reminder from Mike that the following website permits us to follow the progress of bills related to ASD -www.parl.gc.ca
• • There are presently two bills dealing with Autism Spectrum Disorder, which are being introduced by the Member of Parliament for Sudbury, Glenn Thibeault (NDP).
• • Bill C-218: http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5079448
•      Bill C-219: http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Language=E&Mode=1&billId=5080253
  
  
  These meetings were an opportunity for CASDA to reinforce the importance of action on the federal level in the area of Autism Spectrum Disorders and share our vision that all Canadians with an Autism Spectrum Disorder have full and equal access to the resources that they require to achieve their full potential.
  
  
  Thank-you for joining CASDA to ensure that our vision becomes a reality. Our strong, collective voice for the Autism Spectrum Disorder community at the federal level is making a difference!

Harper Majority Means No Real National Autism Strategy 4 At Least 4 More Years

Photograph by: Blair Gable, Reuters

Canadians are waiting to see what Stephen Harper does with the very solid majority that Canadians voted to give him on Monday.  One thing they will not have to wait for during the Harper majority years is a Real National Autism Strategy.  I am not a fan of Stephen Harper and I do not trust him on important issues like health care.  What I do not question is his opposition to any serious role for the federal government in ensuring that autistic children and adults across Canada receive effective evidence based treatment for autism,  a real education or decent, autism specific residential care. 

Citing Constitutional grounds Harper's team led by Mike Lake, father of an autistic son,  have consistently refused to get involved in any meaningful effort to help autistic Canadians.  The recent declaration by prominent British Columbia Harper cabinet minister James Moore that autism is not a disability calls into question Mike Lake's autism awareness efforts within his own party but leaves no room for doubt.  There will be no help for autistic Canadians, no Medicare for Autism, no Real National Autism Strategy during a Harper administration.  Any efforts to bring about a Real National Autism Strategy must look to the future until after the Harper majority has run its course.

My Autism Speaks Canada Autism Advocacy Experience - We Still Need A REAL National Autism Strategy

I did not, as I had previously hoped, attend in Banff Alberta for the Autism Speaks National Autism Strategy discussions which were taking place during the NeuroDevNet and Autism Research Training (ART) Program first Biennial ART-NeuroDevNet Winter Institute March 2-6. Circumstances, including limited flight options out of Fredericton, did not permit me to attend in person.  I did participate, by teleconference, in the 2 hour National Autism Strategy/Advocacy program sponsored by Autism Speaks Canada.  I do not know what Autism Speaks Canada will take away from the input it received.  These are some of my thoughts, some of what I took away from the discussions.

First, I commend Suzanne Lanthier of Autism Speaks Canada for her impeccable courtesy and professionalism both in organizing the event and in moderating the discussion group.  It is easy to see why Autism Speaks  has engaged Suzanne as their primary representative in Canada.  She is very focused and informed. Autism Speaks Canada itself though  has not been a player in the drive for a National Autism Strategy which has taken place over the past 10 years. Autism Speaks Canada does not speak for the parent advocates in various provinces including here in New Brunswick who have fought for provincial services and for a National Autism Strategy. Any effort by Autism Speaks Canada to form a National Autism Strategy must be consistent with the efforts made by parents who have long fought for such a strategy. Otherwise there will be several boats rowing in different directions, not one boat with all rowing together in one direction, as the hope was expressed during the discussions.

Second, I was also impressed with Mike Lake, an Alberta MP and father of a 15 year old child with an autism disorder.  Mike Lake and I are diametrically opposed on issues of National Autism Strategy but he did take 2 hours from an undoubtedly hectic schedule to participate in the Conference.  He was impeccably polite and articulate and made his argument very well. 

Essentially though Mike Lake's argument  is the argument of Stephen Harper and the current version of the Conservative Party of Canada which says that autism falls within provincial jurisdiction and it is the provincial governments which must implement policy with respect to autism issues in health, education and social development. As a lawyer I understand the Harper/Lake argument but the historical fact is that Canada has not limited itself to the  hard confines of strict jurisdictional walls.  Cooperative federalism has existed for many years to permit federal efforts to address issues that  take on a national scope.  The National Health Care Act itself is a prime example of cooperative federalism.  The National Health Care Act would not exist at all using the Harper/Lake logic. In Canada our federal government has stood back and watched as more and more autistic children are diagnosed with autism disorders with current, reliable US, figures estimating 1 in 110.  Cooperative federalism is required in the form of national legislation to authorize the federal government to provide funding for necessary evidence based treatments and services and to ensure that the funding is used for that purpose in each province.

Across  Canada there are inconsistent and varied early intervention programs in place to help autistic children.  Apart from New Brunswick it is not clear that any other province has integrated autistic children into neighborhood schools in accommodated learning environments within the schools and with autism trained teacher aides and resource teachers when appropriate.  Our autistic children are also becoming adults and for those with severe, classic autistic disorder  who are low functioning and intellectually disabled there is a crying need for decent residential care and treatment. If our national government refuses to get involved many autistic Canadians will be denied a decent life.  They will have been abandoned in the name of frigid, hard constitutional rigidity.  

If Canada is to have a  real national autism strategy it must consist of more than surveys and internet information sites. It must be one which ensures that all Canadian autistic children and adults have access to evidence based treatment and education.  A real national autism strategy will be one which commits the federal government, through Federal legislation,  to work directly with the provinces to ensure that all autistic Canadians have access to evidence based treatment and education and to decent residential care and treatment.    A national autism strategy which does not focus on these goals will not help Canadian children and adults with autism disorders.  If a national autism strategy is not focused on achieving such goals it is a sham, a mockery of the desperate needs of many autistic Canadians and their families.

It's Not Just Children with Autism - Stephen Harper Just Doesn't Care

Autism parent advocates have advocated for many years for a national autism strategy.  NDP and Liberal MP's and Senators including Peter Stoffer, Shawn Murphy, Andy Scott and  Jim Munson joined them in their efforts but no meaningful strategy has resulted in Parliament.  

Under Stephen Harper autism has been rejected as a concern by our federal government. A national autism symposium was cancelled and rescheduled after it became clear that serious autism advocates were slated to attend. The Harper government rescheduled  a sham national autism symposium to make sure that "local" representatives were put forth who would be  docile and not rock the boat by calling for federal funding across Canada of evidence based autism interventions.  

Medicare for Autism was not, and will not, happen under a Harper government.  Sure Mike Lake, a Conservative MP and father of a child with autism, will be happy to appear as a token autism parent/Conservative MP  at autism events to harvest PR for the Conservative Party but neither he, nor  Prime Minister Harper, will permit any serious discussion of a meaningful national autism strategy involving federal support of funding for evidence based autism intervention for all autistic Canadian children. Effective evidence based intervention for autistic Canadian children is just not up there with census forms in the Harper list of priorities

It comes as no surprise, given Harper's lack of concern about addressing Canada's national autism crisis,  that the same "not my problem", attitude of our PM is manifested in other non-action as seen in the following horror story from the Calgary Herald. A Canadian child visiting his stepfather in Oregon, who resided there for health reasons during the winter, was detained by state health authorities for riding a bike without a helmet.  He was in fact detained by the state for 2 years and placed in a succession of foster homes while his mother fought for his return to their home in Calgary.  Eventually he was returned and a lawsuit brought by the State of Oregon against his mother for child care expenses dropped after a group of lawyers stepped in to help.  The Canadian government under Stephen Harper remained on the sidelines as described in the Calgary Herald:

"No, the state of Oregon didn't prove -- it didn't even claim -- that Noah was neglected or abused by either his mother or stepfather, who unfortunately doesn't have the status of legal guardian to Noah.

But that didn't convince them to cave in to common sense for several months. In the end, it was most likely embarrassment that prompted their about-face, dropping the lawsuit citing an estimated $7,500 in costs for caring for Noah -- the story made headlines around the world, eventually catching the attention of TV news network CNN.

On Tuesday, both Kirkman and her lawyer, Daniel Mol, express thanks for others who have helped them in their cause, most notably lawyer Tony Merchant and The National Council for the Protection of Canadians Abroad -- who earlier stepped in to fill the void of a silent Harper government and filed an application under The Hague Convention in U.S. federal court, asking for the boy's return under international law.

But after the momentary joy over their victory, the most salient emotion they show is righteous anger.

"I never expected to be sued for the cost of them essentially kidnapping my son," says Kirkman outside court."

Harper and his autism dad spokesperson Mike Lake have said that because health care is within primary provincial constitutional jurisdiction it can take no action to implement a serious national autism strategy. That position ignores decades of cooperative efforts between federal and provincial governments to address important issues using all available Canadian resource regardless of strict constitutional categories.  What is interesting in the Kirkman  case is that the protection of Canadians in foreign countries, especially Canadian children, is a matter squarely within federal constitutional jurisdiction but Prime Minister Stephen Harper did nothing to protect a Canadian child abroad. 

Autism should be a non partisan issue.  Here in NB both Conservative Premier Bernard Lord and Liberal Premier Shawn Graham took steps to make NB a leader  in autism service delivery.  Federally though it is crystal clear that no serious national autism strategy will be developed as long as Stephen Harper is Prime Minister.

Let's face facts.  Our Prime Minister just doesn't care.  Period.

A REAL National Autism Strategy Request for Mr Ignatieff and Mr Layton

Dear Honourable Leaders, MP's and Senator Munson

I am the father of a 13 year old boy with Autistic Disorder, assessed with profound developmental delays living in Fredericton, New Brunswick. I have addressed this email correspondence to Mr Ignatieff and Mr Layton as the leaders of the two parties, Liberal and NDP, that have recognized the need for a real National Autism Strategy. I have also copied some of the members of both parties in the House, and Senator Munson, who have made outstanding individual efforts on behalf of autistic children and adults in Canada and who have fought for a real National Autism Strategy.

The motion by Mr. Stoffer and our former Fredericton MP Andy Scott achieved recognition by the House of Commons of the need for a National Autism Strategy. Unfortunately the private members bill brought by Mr. Shawn Murphy from PEI which would have done so much to ensure that autistic children across Canada have real access to evidence based autism interventions was defeated notwithstanding the solid support demonstrated by both of your parties. I humbly ask that both the Liberal and NDP parties not give up on autistic children and adults and continue the fight for a real National Autism Strategy one that would see a federal government commitment to funding evidence based autism interventions and decent residential care for all Canadians with Autism Spectrum Disorders regardless of their province of residence.

Canadians have moved from province to province seeking appropriate help, particularly Applied Behavior Analysis (ABA), for their children. Gains have been made by provincial action across Canada but there are huge gaps in the services available. As a New Brunswicker I am proud of what our province has done with relatively limited resources to help autistic children but much more needs to be done here, particularly for autistic youths and adults in need of decent residential care. Even a family with two medical professionals left Nova Scotia to seek ABA help for their autistic child in Manitoba. In Ontario, where I visited in the spring of 2008 as part of a national autism advocacy tour organized by our good friends from FEAT BC, more autistic children are languishing on waiting lists than are actually receiving treatment.

I remind you of the well informed comments of Ms Dhalla when she spoke on behalf of the Liberal Party in the House of Commons, on October 27, 2006, in support of the Scott-Stoffer motion calling for a National Autism Strategy:

"We must make sure that regardless of where one lives in Canada, whether it is on the west coast, the east coast or in the Northwest Territories, all children who are affected by autism actually have the opportunity to receive the treatment they need throughout their lives until the age of 18.

I am sure this national strategy is going to ensure that we have the proper investment to do further research into whether there are other treatment options available and into how this type of condition can be prevented. We must invest in a comprehensive strategy to address this very complex disorder. (1420)

As I have mentioned, we know the cost is upwards of $70,000 per year, but we have to ensure we give the opportunity to these families so their children can obtain treatment and provide them with the quality of life they need. These families should be able to do this without having to mortgage their homes, or sell their cars, or go through those financial hardships. Many families that have been affected by autism simply cannot afford this treatment.?"

I ask that both the Liberal and NDP parties keep the need for a real National Autism Strategy in mind as you go forward and work toward a strategy which sees Canada invest in autistic children and adults regardless of their province or territory of residence. Canada is more than a place where one's health, one's quality of life depends entirely on jurisdictional boundaries. Our national health care scheme generally, which results in longer life expectancy and greater infant survival rates than that of our good neighbours to the south, is a testament to that fact.

Please do your best to ensure the enactment of a REAL National Autism Strategy for all autistic Canadians.

Respectfully,

Harold L Doherty
Fredericton, New Brunswick

autism

Please Endorse "Canada Needs a REAL National Autism Strategy "

There are HUGE discrepancies from one province to another in Canada when it comes to the availability of ABA and evidence based treatments for autism disorders. Alberta has long had top tier funding of ABA treatment. New Brunswick has done well with much more limited resources but is need of shoring up. Nova Scotia has an immoral lottery system that determines which autistic children receive autism treatment and which do not. Some provinces and territories, even Ontario traditionally a leader in Canada is in desperate need of assistance in addressing Canada's autism crisis as many of Ontario's autistic children languish on interminable waiting lists. Canada needs a REAL National Autism Strategy and we needed it yesterday.

Please visit Parliament2 Top Priorities for Canada, register and endorse Canada Needs a REAL National Autism Strategy.

autism