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The Role of Government
Autism Society Canada supports the universal provision of all necessary treatments and educational approaches for people with ASDs of all ages. Governments must not discriminate, and must fund effective treatments as recommended by the individual's medical team.
People with ASDs and their families need the Government of Canada to take a leadership role with regard to Autism Spectrum Disorders:
- Increase funding for provinces and territories to provide critical no-cost treatment, education, professional training and required supports for Canadians with ASD.
- Mandate the Public Health Agency of Canada (PHAC) to make autism a national priority by initiating surveillance and reporting, and setting national standards for treatment and service delivery.
- Allocate significant funds targeted for ASD research to Canadian funding organizations such as CIHR.
- Improve financial and other supports to individuals with disabilities and their families through the federal tax and labour systems.
- Develop a National Strategy on ASD
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What is Needed?
- Better screening for ASD. Universal screening is not available in Canada.
- Accurate timely diagnosis and comprehensive assessment of all aspects of the condition provided by professionals with specialized ASD diagnostic training for both children and adults.
- Universally accessible treatment and services across the lifespan regardless of age or ability to pay. Autism Society Canada supports evidence-based treatment models and the right to choose treatments that are in the best interests of the individual.
- Early intervention: Everyone should have the opportunity to benefit from early treatment. It makes sense to offer the most effective treatments to people in the hope that they will respond. There is strong support from the Canadian autism research community that all people with ASD should have access to early intervention, evidence-based effective treatment and required supports.
- Treatment to address educational needs, behaviour issues, communication problems and/or motor and physical disabilities and medical needs are all vital – these will include some combination of:
- early intensive behavioural interventions;
- speech and language therapy;
- other communication interventions;
- physical or occupational therapy;
- specialized medical services;
- social and self-help skills development; and,
- biomedical and/or pharmacological assistance.
- Supports to facilitate community inclusion, including teachers and aides with specialized autism education training, career/vocational training and support, better assisted living arrangements and professional assistance in work and community situations.
- More attention to the needs of adults and seniors with ASDs.
- Supports for caregivers, including respite, family training and assistance, sibling supports, and long-term planning and financial assistance.
- Increased funding and support for research on effective ASD treatments and interventions.
ASC is working to ensure that all people affected by autism have access to effective treatments and other required services. The right of choice in deciding on a treatment approach is paramount; services must be made available so that choice is possible.
Barriers to Accessing Treatment
- Lack of Diagnosis and Assessment
Currently there is no universal screening for autism in Canada. Diagnosis of an autism condition can take 3 to 24 months for preschoolers, and for youngsters, sometimes several years. A growing issue is diagnosis of youth and adults whose ASD was not previously accurately identified. Assessment for certain aspects of ASD is provided in some locations, usually related to learning disabilities, communication and motor skills, but more rarely for medical or other physical issues related to autism. More on diagnosis...
- The Burden of Proof
Provinces often indicate that only traditional treatments provided by physicians should be included in their insured medical services. However, there are many other insured services recommended by physicians which are carried out by other trained, accredited health professionals.
Children and adults with debilitating autism conditions cannot wait for research to provide every answer about the causes of autism and to provide absolutely perfect treatment options. That is a bit like suggesting that no treatments for heart disease should be offered until there is complete agreement about every possible cause of heart disease. That kind of thinking is not acceptable to most people.
There is certainly enough widely accepted peer-reviewed research about effective methods of assisting a person with ASD to experience significant improvement in many areas of development. ASC feels that refusing to exercise that knowledge through effective treatment provision is irresponsible from a moral and financial perspective. Courts across the country have also been supporting this perspective.
- Lack of Professional Training
There are still a limited number of qualified professionals to provide effective autism treatment services. Medical, health, education and social work professional training does not currently include adequate autism and ASD treatment information. Nor do these professional organizations require specific autism accreditation and licensing.
In the last few years, more Canadian colleges and universities have seen the need to offer ABA training. (See: Resources for Professionals: Education and Training) Nonetheless, many families seeking treatment for their family member with ASD have to locate an ABA accredited professional, often from outside their region, and pay for their expenses to come, provide consultation, training and supervision of ABA programming.
Providing intensive early school-aged treatment is very expensive, how can governments with limited funds pay for it?
- Firstly, lack of funding should never be a reason for not taking care of our children. Medical treatments, services and supports are also very expensive but we do not deny them to children who need them.
- Investing in intensive early treatment and interventions for autism conditions is costly but lack of treatment or ineffective treatment is far more costly, both for individuals with autism who are prevented from reaching their full potential and in financial terms for our current and future health, social and justice systems.
- In his 2007 research, Dr. Micheal Ganz of the Lexington, and Harvard School of Public Health found that the lifetime per capita incremental societal cost of autism in the U.S. is $3.2 million. Lost productivity and adult care are the largest components of costs. Direct medical costs are quite high for the first 5 years of life (average of around $35 000), start to decline substantially by age 8 years (around $6000), and continue to decline through the end of life to around $1000. Direct nonmedical costs vary around $10 000 to approximately $16 000 during the first 20 years of life, peak in the 23- to 27-year age range (around $27 500), and then steadily decline to the end of life to around $8000 in the last age group. Indirect costs also display a similar pattern, decreasing from around $43 000 in early life, peaking at ages 23 to 27 years (around $52 000), and declining through the end of life to $0. (The Lifetime Distribution of the Incremental Societal Costs of Autism. Michael L. Ganz, MS, PhD: Arch Pediatr Adolesc Med. 2007;161(4):343-349.)
- The Cambridge Center for Behavioral Studies estimates that Early Intensive Behavioral Intervention (EIBI) saves up to $2,500,000 per person. Research shows that without effective intervention, most people with autism and other pervasive developmental disorders (PDD) require a lifetime of specialized educational, family, and adult services, at a total cost that is estimated at upwards of $4 million. (John W. Jacobson, James A. Mulick, and Gina Green, In Behavioral Interventions, 1998, Volume 13, 201-226)
- ABA in particular has cost-effectiveness studies which indicate that at least half of the life-time cost of supporting individuals with ASDs can be cut with the provision of ABA. (Jacobsen et al, 1998; Jarbrink and Knapp, 2000).
Legal Actions
The Auton Case (B.C.)
- The Auton case was the first case where a provincial appeal court upheld a lower court's decision that Charter rights require a provincial government to pay for a specific health treatment.
- The provincial ruling was appealed by the B.C. Government to the Supreme Court of Canada.
- Almost every provincial and federal Attorney General intervened in the case, and there were a record 29 interveners - a clear indication of the importance of this case not only to the autism community, but to the health and disability communities, and to every provincial government.
- ASC also intervened - arguing that all people in Canada share the right to accessible effective treatment for their medical conditions.
- The Supreme Court overturned the two lower court rulings.
- Legal actions continue.
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As of 2005, approximately 1,600 Canadian families are engaged in various autism-related legal actions. British Columbia, Ontario and Alberta have been very active with multiple legal actions. Other provinces with recent and current ASD legal actions include Quebec (very large class action), Nova Scotia, New Brunswick and Newfoundland. Families in many provinces are in the process of exploring and organizing additional legal actions.
The premise of most of the legal actions in Canada is that it is discriminatory not to provide scientifically validated effective treatment to certain groups of people (people with Autism Spectrum Disorders, people with ASD over the age of six and of any age). Treatment is costly, and few families have the personal financial resources to provide ABA. The outcomes of legal actions and appeals to date have been overwhelmingly in support of the assertion that people with autism should be afforded the opportunity to receive scientifically validated effective treatment in a non-discriminatory manner.
Legal actions have sometimes been the only means to motivate a provincial government to provide effective treatment to children with ASDs, but they are expensive and often take years. Few families can afford to initiate and maintain legal actions, and few families can cope with the additional duress of legal action on top of their already exceedingly high stress levels. More on legal actions... Download Page: Auton Factum and Press Releases.
Further reading:
ARCH Disability Law Centre: A Legal Resource Centre for Persons with Disabilities is a specialty legal aid clinic dedicated to defending and advancing the equality-rights of persons with disabilities.
Autism: The Demand for Advocacy (info pamphlet). The National Autistic Society, United Kingdom.
Autism Resoluton Ontario: A new parent-led initiative to combat government discrimination against children with ASDs and to make ABA therapy more accessible.
Interactive Autism Network (IAN) Research Reports:
April 2009: Family Stress - Part 1 | May 2009: Family Stress - Part 2 Work Life and Finances
Advancing Futures for Adults with Autism, Expert Think Tank summary report.
Canadian Association for Community Living (CACL): A federation of more than 400 Local Associations for Community Living, plus 13 Provincial/Territorial ACLs, and over 40,000 people working to advance the full inclusion and human rights of people with intellectual disabilities.
Charter for Persons with Autism, Autism Europe. Adopted as a written declaration by the European parliament on May 9, 1996.
Collective Voice of the Autism Community in Canada Calls on Government to Take Steps to Establish National Autism Strategy. Ottawa, Nov. 5, 2007
Combating Autism ( U.S.).
Constructive Campaigning for Autism Services: The PACE Parents' Handbook.
FEAT (Families for Early Autism Treatment) BC.
FEAT (Families for Effective Autism Treatment) of Alberta
MFEAT (Manitoba Families for Effective Autism Treatment).
Forgotten: Ontario Adults with Autism and Adults with Aspergers [PDF]. Autism Ontario, October 15, 2008: Recommendations for supports and services for adults with Autism Spectrum Disorder.
Harold Doherty’s autism blog: Facing Autism in New Brunswick.
Legal Action in Canada: Resource on the law and court cases involving learning disabilities.
Office of the Auditor General of Ontario – Annual Report 2008.
News from Ontario Autism Coalition
Ontario Coalition for Inclusive Education
Policy Forum: Autism Across the Lifespan. Montreal, February 5–6, 2009 [PDF]. Centre of Excellence for Early Childhood Development (CEECD) and the Centre of Excellence for Children and Adolescents with Special Needs (CECASN),
Provincial and Territorial Funding Programs for Autism Therapy, Parliamentary Information and Research Service, Canada, 2006.
Recours Collectif.
Report of the Advisory Committee of Adults with Autism Spectrum Disorders, Presented to the Autism Society Canada Board of Directors, February 4, 2007
Special education legal resource web site.
The Health of Canadians – The Federal Role. Final Report. Volume Six: Recommendations for Reform (2002). The Standing Senate Committee on Social Affairs, Science and Technology.
The federal government has responded to the Canadian Standing Senate Committee on Social Affairs recommendations in their report "Pay Now or Pay Later: Autism Families in Crisis" – tabled in the Senate on October 17, 2007. French-PDF | English-PDF
The Standing Senate Committee on Social Affairs, Science and Technology Final Report on: The Enquiry on the Funding for the Treatment of Autism, Pay Now or Pay Later: Autism Families In Crisis, Chair: The Honourable Art Eggleton, P.C., Deputy Chair: The Honourable Wilbert Joseph Keon, March 2007
The Rights of Ageing People with Autism, Autism Europe. A position paper on ageing persons with Autism.
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