Dear Canada Autism Spectrum Disorders Alliance: Important Autism News for Your Members

 

 The fight for a REAL National Autism Strategy including Medicare coverage of ABA 

for autism began more than 15 years ago in courts in BC and in  the offices of 

Fredericton MP Andy Scott, joined by Nova Scotia MP Peter Stoffer, former 

PEI MP Shawn Murphy,  and  Ontario MP Glenn Thibeault and has  continued 

under the leadership of the Medicare for Autism NOW! organizaton.

Members of CASDA, the Canadian Autism Spectrum Disorders 

Alliance, might be interested in the strong federal NDP  statement

of commitment to a REAL National Autism Strategy and Medicare 

 coverage of ABA  for Autism.

July 19, 2014

CASDA Leadership Committee

Cynthia Carroll, Executive Director, Autism Nova Scotia

Laurie Mawlam, Executive Director, Autism Canada Founndation

Richard Burelle, Executive Director, Autism Society Canada

Dave Mikkelsen, Executive Director, Society for the Treatment of Autism

Debbie Irish, Executive Director, Geneva Centre for Autism

Suzanne Jacobson. President, Quick Start

Jill Farber, Executive Director, Autism Speaks Canada

Dear Executive Directors and CASDA Board Members:

I  am a father of a severely autistic 18 year old son with intellectual disability and epileptic seizures.  Although I am not currently a president, member or  executive director of any organization or board I have been actively involved as an advocate provincially in NB for 15 years where we have, in response to focused parental advocacy, one of the earliest  established credible provincial early autism intervention programs and autism trained Education Aides and Resource teachers in our schools.

We also worked during those 15 years with the late Andy Scott, then our Fredericton area MP, towards a National Autism Strategy that resulted in the private members' motion to that effect sponsored by Andy and Nova Scotia MP Peter Stoffer.

I wish to bring to your attention a reply I received recently from the office of the Leader of the Official Opposition, Thomas Mulcair.  The reply is set out in full on my blog Facing Autism in New Brunswick in a July 11, 2014 commentary NDP Continues Strong Leadership for A Real National Autism Strategy.

To save your time though I reprint the reply directly.  It confirms the federal NDP commitment to a real National Autism Strategy including ABA coverage under Medicare:

Dear Mr. Doherty,

Thank you for writing. We appreciate hearing of your advocacy work on behalf of your son and all individuals living with autism spectrum disorders.

Please be assured that New Democrats are determined to help put the needs of Autistic children on the political map. The NDP supports the continuing efforts to create a National Autism Strategy, therefore ensuring that individuals would receive the highest level of care, regardless of which region of Canada they live in.

As you mentioned, NDP MP Glenn Thibeault is helping to provide leadership on this matter along with working to have the Canada Health Act amended to include Applied Behavioural Analysis (ABA) and Intensive Behavioural Intervention (IBI) as medically recognized treatments for individuals living with autism spectrum disorders. (http://glennthibeault.ndp.ca/post/thibeault-re-introduces-autism-legislation) 

Going forward you can count on our team of New Democrat MPs to continue to speak out on this matter. It’s time for leadership that will move Canada forward.

Again, thank you for taking the time to be in touch.

All the best,

Office of Thomas Mulcair, MP (Outremont)

Leader of the Official Opposition

New Democratic Party of Canada

This is, in my humble opinion, very significant news for autism parents and advocates.  The fight for a Real National Autism  Strategy has been a long one, starting at least 15 years ago in NB. It will undoubtedly take much more time but the statement by the current Leader of the Official Opposition is an important step in that struggle.

It would be appreciated if you and your members could advocate directly to your respective MPs and would be MPs and request all parties to make the same commitment made by the New Democratic Party of Canada. If that is too much for your organization to contemplate I ask you all to highlight this important development on all your information sites and members news releases.

Respectfully,

Harold L Doherty,  Fredericton, NB

cc. media, interested parties

Is the CASDA National Autism Needs Assessment Survey Credible and Legitimate?

"This survey marks an important opportunity for parents, individuals with ASD and professionals in the autism field to serve notice to our federal government that a national autism strategy is needed. Canadians with ASD deserve the attention of our government. They deserve to have policy and planning done using evidence from across the country and to have standards for service set at the national level,"said Cynthia Carroll, CASDA Chair."

Should autistic Canadians and their family members complete this survey reference above?  While I am very skeptical about the credibility and legitimacy of this survey, for the reasons that I set out in this commentary I do recommend that all eligible autistic Canadians, family members and care givers, give the organizers a chance and  complete the survey.

The above quote from CASDA director Carroll is from the CASDA National Needs Assessment News Release, set out in full below my commentary.  The quote itself is interesting in that it seems to assume, in stating that the survey is an opportunity to serve notice to our federal government that a national autism strategy is needed, that such notice has not already been provided, when in fact our federal government has been served with such notice many times over the past decade.

Parents here in Fredericton NB were actively involved over 15 years ago in lobbying our late, former MP Andy Scott to push our federal government to adopt a National Autism Strategy. Together with Nova Scotia MP Peter Stoffer a private members bill was passed which, although lacking teeth, did at least "serve notice" that a National Autism Strategy was needed.  A motion for a real national autism strategy also originated from the Maritime Provinces when former PEI MP Shawn Murphy attempted unsuccessfully to include autism treatment under our national healthcare legislation.  The Medicare for Autism NOW! organization originating in BC with members and supporters across Canada,  has advocated extensively for inclusion of autism treatment in medicare coverage for many years.  The Canadian Senate released its Pay Now or Pay Later report several years ago.

Nothing of substance resulted from these historical efforts.  Even a National Autism Symposium which had been scheduled was cancelled and then rescheduled under the hilarious excuse that premises for the Symposium were unavailable in Canada's National Capital Region where such events are a core business of the area.  When the event was rescheduled local autism community activists, including me, nominated to attend by autism professionals were not accepted for participation by the Harper government.  Instead strident anti-ABA activist Michelle Dawson was given prominence and a stage to push her opinions at the "national autism symposium".  The efforts of parents across Canada had led to the introduction to various degrees of early ABA intervention, the only evidence based treatment for autism, in the provinces. The federal government opposed a national autism strategy which recognized those efforts and instead set up a phony puppet symposium of those who opposed evidence based early intervention for autism disorders.  

Is there any reason to think that the current needs assessment survey will result in a credible, representative statement of needs of autistic Canadians and their families? The CASDA web site indicates that the survey is funded by the Public Health Agency Canada (PHAC). As someone who has seen the opposition by Prime Minister Harper and CASDA "Political Ambassador" Mike Lake to a national effort to ensure that all Canadian children receive effective evidence based treatment regardless of their province of residence I am doubtful. As someone who has been active in autism advocacy in Canada including the events leading to the replacement of the original National Autism Symposium by the phony symposium dictated and controlled by the Harper government I will be very surprised if this survey results in a credible, genuine National Autism Needs Assessment.

I  sincerely hope though that  my skepticism is misplaced.  I myself completed the survey.  As a lawyer I have on occasion changed the legal opinion provided to clients when new information, new evidence points to a different or contrary conclusion.  I hope that this survey results in a genuine assessment of the needs of ALL autistic Canadians, of all ages and severity levels wherever they live in Canada.  Just as important I hope that the survey results in effective, real action and not more posturing and inaction.  

I urge all eligible Canadians to complete the CASDA survey.

-------------------------------------------------------------------------------------------

News Release

Autism National Needs Assessment Survey Responses Surpass Halfway Mark

 In one month, over 2,600 surveys completed, but help needed from ALL provinces [TORONTO – May 12, 2014] On April 2, 2014, World Autism Awareness Day, the Canadian Autism Spectrum Disorders Alliance (CASDA) launched the first National Needs Assessment Survey for Autism in Canada. Today, CASDA is delighted to announce that, after one month, they have surpassed the halfway mark with over 2,600 responses from the Canadian Autism Spectrum Disorder (ASD) community. This National Needs Assessment Survey is the first of its kind in Canada and is designed to canvas the opinions of thousands of Canadians, from all provinces and territories, with a goal of 5000 surveys completed. After analyzing the data to date, there has been an overwhelming response from ASD professionals and caregivers in Ontario but not yet enough representation from caregivers, professionals and those with ASD in other provinces. To ensure the data is statistically accurate and representative of the entire country, CASDA needs solid rates of response from all provinces.

 "This survey marks an important opportunity for parents, individuals with ASD and professionals in the autism field to serve notice to our federal government that a national autism strategy is needed. Canadians with ASD deserve the attention of our government. They deserve to have policy and planning done using evidence from across the country and to have standards for service set at the national level," said Cynthia Carroll, CASDA Chair. While 1 in 68 people in Canada will be diagnosed with Autism, there are thousands more who live, work and care for them. The data gathered from this survey will identify existing services and service gaps, provide perspectives based on regional, individual, family and professional views and needs as well as help support surveillance initiatives. Survey Quick Facts

• CASDA needs 5000 Canadians to complete the survey in order to ensure a statistically representative sample size.

• 300 surveys completed by parents/caregivers of children with ASD are needed in each province.

• To be eligible to complete the survey you must be, an Individual with ASD, a Family member of an individual with ASD or a Caregiver of an individual with ASD.

 • Survey is open only until June 30th and takes just 15 minutes to complete • Survey is available online in English at http://bit.ly/1qkfMQy and in French http://bit.ly/1gHySe1

• CASDA will use this information to write a report for the Public Health Agency of Canada, estimated publish date is October, 2014.

• Join the conversation online using #GetTo5000

CASDA wants everyone touched by Autism in Canada to have their voice heard and together, the ASD community is in a position to influence public policy and planning in Canada.

CASDA is a national coalition of autism related professionals, family members and community members and together, they are working to secure the federal government’s commitment to the development of a National Autism Action Plan. The National Needs Assessment survey was developed by Dr. Jonathan Weiss, a researcher from York University and CIHR Chair in Autism Spectrum Disorders Treatment  and Care Research, in consultation with Cynthia Carroll from Autism Nova Scotia. This research has been  approved by the Ethics Review Board of York University. From the data collected, CASDA will produce a  report to assist with its planning and advocacy process.

For more information, contact
Marg Whelan
Project Manager
info@asdalliance.org
416-522-9180

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!