Sunday, July 03, 2011

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!


4 comments:

farmwifetwo said...

I sent those links earlier about the ABA legislation to my MP with a reminded that "training" children is not appropriate. What we need is speech - public both in and out of school, OT - ditto, ACS, aides, proper classrooms and proper long term adult care.

Having had to deal with one of the "autism" Prov funded organizations in this corner of the world yet again a couple of weeks ago after 5 years.... They called us and wanted me to agree to re-dx my kid to prove that he didn't have autism... No matter about the speech therapy (private/public), the fact PPM 140 is still in his IEP, the fact he's off to social skills daycamp this summer, the laptop that is coming via his IPRC and the fact he still has OT and a quarter time aide... NOT TO MENTION... the school board doesn't recommend it be done... I asked btw. They know he is doing amazing b/c of the services available via the dx. Pulling it just b/c the child "passes for normal" at a glance and academically holds his own, is neither in his nor their best interest.

"But it won't be in his public record".... and how are you going to pay for it?? electronic records?? and to prove you are correct... They were SHOCKED I wouldn't just rush right up there and have them do it. The arrogance and know-it-all attitude hasn't improved a bit... They don't deserve my support.

Oh, and I told my MP about that phone call too.

Autism Reality NB said...

FW2, Canada is a democracy and you have a right to advocate against ABA, even though it remains the only evidence based effective intervention for autistic children. You have a democratic right to advocate against ABA even though so many other parents seek ABA to help their autistic children. I respect your democratic right even if I don't respect what you do with it ... and I do not ... you are fighting to prevent other parents from helping their autistic children.

Laurie Mawlam said...

Dear Harold,

Thank you for your post on CASDA, it truly helps bring more awareness to what we are doing. As a little background, we were formed in July 2007 shortly after the Senate Committee Report “Pay Now or Pay Later: Autism Families in Crisis”. During this time the federal government sent a clear message to the autism community: We need to work together with a unified voice. We responded by forming CASDA.

Over the last four years, we have engaged Members of Parliament, Senior Officials and Senators to advocate for a National Autism Strategy and pitch our position paper. I would encourage you to become familiar with CASDA’s website, www.ASDallaince.org, and position paper, http://www.asdalliance.org/English/pdf/CASDAPositionPaper.pdf.

I have been to Ottawa enough times to know that the Feds have no problem passing the buck on to the provinces. When talking to the Feds you better watch what you ask for. If you ask for help with early intervention, education and adult residential care they will quickly wipe their hands saying this falls under provincial jurisdiction.

CASDA’s position is to have a National Strategy that includes:

Ø National surveillance (is there a problem with autism rates increasing?).
Ø A clear communication from PHAC on best practices (not unlike what we have seen historically for things like waiting times in hospital emergency rooms), which would obviously include ABA. When this happens this would certainly put pressure on the provinces to make it available to all.
Ø The Feds need to take a leadership or facilitator role and get the provinces talking to ensure that services and treatments are consistent across this country and to examine what is working.
Ø The health of Aboriginals falls totally on the federal government and to date they are poorly serviced just like most other Canadians. The point is that this cannot be pushed on to the provinces. The federal government is a health care provider.
Ø Research is part of the federal government’s mandate and we want research into emerging treatments and potential environment triggers.
Ø Help with Financial Assistance to Families by way of allowing expenditures for treatments and services recommended by licensed professional (including Pediatrician, Psychologist, Occupational Therapist, Speech Pathologist etc…) as a Medical Tax Deduction. It is perceived that families with dependents with autism are being audited with more frequency than other Canadians largely due to the medical expenses they claim.
Ø Nationals Awareness is critical to ensuring that out children are understood and supported.

I hope this sheds light on what we are doing and I encourage you to join. It is through working together that we will have the strongest voice that will impact real change.

Laurie Mawlam
Executive Director
Autism Canada

Autism Reality NB said...

Thank you for sharing your autism advocacy and opinions Lawrie. I enjoyed talking with your in our phone conversation several months ago. I do not believe though that CASDA is the voice of parents who have fought for many years for a REAL national autism strategy. When you meet with the federal government remember they are meeting with you in large part because of CASDA's timid agenda and because you enable Mr. Lake and the government to say that they are doing something on the national autism front when in fact they are doing nothing of substance. Even in the area of awareness Mr. Lake's colleague Mr. Moore stated during the election campaign that autism is not a disability.

I have been involved with autism advocacy long before 2007. NB where I live had a strong parental advocacy movement which resulted in an early intervention program as good as most in Canada which has been in place for several years. Our efforts in education also resulted in the autism specific education of more than 500 education assistants and resource teachers. The UNB-CEL Autism Training program which resulted from parent advocacy has been externally reviewed and recommended for adoption by Dr. Eric Larssen of the Lovaas Institue. Dr. David Celiberti has also commented favorably on the program. The province of Saskatchewan has contracted with UNB-CEL for use of its autism training program. These are actual accomplishments that have directly helped NB's autistic preschoolers and students.

One of the first areas I was involved with after my son's autism diagnosis in 1998 was the effort to establish a National Autism Strategy. Along with several other parents I began meetings with our MP at that time, Andy Scott. We focused on a National Autism Strategy in our meetings with Andy and he publicly advocacted for a NAS long before the 2007 fiasco. Andy did introduce the bill that committed the federal government to a NAS although specifics were lacking. Andy Scott's legislation introduced autism on the national legislative agenda but it was only a beginning not an end.

CASDA should not pretend that it invented the idea of a NAS. It existed across Canada long before CASDA came into existence. Many of the people in different provinces who fought for autism services for their children also fought for a meaningful National Autism Strategy and we are still carrying on that fight. Sitting in meetings with a government that has no intention of taking specific concrete steps to help autistic children and adults and accepting their limited agenda is not providing a united national voice or doing anything to help autistic children and adults.

If CASDA wants to talk about being a united voice it should start walking the walk. It should embrace the efforts for a real national contribution to autistic early intervention, education and adult residential care and treatment. There will be no united autism advocacy voice until that is done.