For immediate release

Supreme Court of Canada Rules Not In Support of Families in
Autism Treatment Case

November 19, 2004 Regina

The Auton case ruling is very specific to the legal interpretation of the B.C. Medicare Protection Act. As such, direct application of this ruling will most likely have limited application to the over 180 other legal actions involving more than 1600 families in various provinces across Canada where public funding is being sought for provision of scientifically validated autism treatment.

"We are saddened by this ruling," said Lisa Simmermon, National Representative from Saskatchewan Families for Effective Autism Treatment to Autism Society Canada’s Board of Directors. "However, it does clarify that autism issues require the work of the federal government and Members of Parliament as our country’s legislators. In particular, Health Canada has a very significant role to work quickly to address treatment and other autism issues on a national basis. This, of course, needs to be accomplished with the provincial and territorial governments, and accomplished soon so that families, including Saskatchewan families, are not required to obtain effective treatment only through legal actions."

The number of students in Saskatchewan has increased by at least 150% over the past six years, and there are now more than 700 students in Saskatchewan with an Autism Spectrum Disorder. Currently, only 6 are provided with comprehensive treatment for their autism in Saskatoon. Families who seek to provide autism treatment for their children in the form of Applied Behavior Analysis/Intensive Behavioral Intervention have to pay for it and/or provide it themselves. This is also very often the case with treatment components speech therapy (for alternative or augmentative language system development as well as speech challenges) and occupational or physical therapy (for motor control and sensory challenges).

Links to the Auton decision (available on the Supreme Court of Canada website) and a media release are available from Autism Society Canada at

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Contacts:

Statements Made by People in the Saskatchewan Government Regarding Autism Spectrum Disorders

(Updated September 27, 2005)

Brad Wall, Leader, Saskatchewan Party (March 2005): from a letter to SaskFEAT President Lynn Verklan – if the Saskatchewan Party forms the next government, they “will work with all stakeholders to provide necessary treatment and services for autistic children.”

Government of Saskatchewan Caucus Committee on Human Services (February 2005) to the Saskatchewan Minister of Health, the Hon. John Nilson: “The presentation from Saskatchewan Families for Effective Autism Treatment concerned issues surrounding the support of autistic children and adults that need review, one in particular being the availability of behavioral therapists.  The committee was impressed with the commitment of the parents and families of people with autism and encourages you to look for ways to improve their lives from diagnosis to therapies, work opportunities and family support”

Saskatchewan Reports that Pertain to Autism Spectrum Disorders Issues

• 2005 Saskatchewan Communities Working Together: Saskatchewan’s Action Plan for Citizens With Cognitive Disabilities (Saskatchewan Health)
  http://www.health.gov.sk.ca/fs_cognitive_disabilities.pdf
  (This document is being reviewed; comments and clarifications will be provided shortly)
• 2004 Report of the Saskatchewan Children’s Advocate
• Children are not accessing the mental health services and supports they need in a timely manner
• Difficulties in accessing services for children with disabilities, including speech therapy, occupational therapy, subsidy for specialized dietary needs and special equipment
• The Government has not responded to the Disability Action Plan

• Expressed concerns about Community Living Division of Community Resources and Employment (formerly Social Services) about difficulty accessing services such as respite to assist with caring for a child with disabilities at home

o       There is a challenge with student and parent accessibility to a fair, independent and consistent mediation, investigation and/or appeal processes in the event of a dispute between the parent or student and the school

·                                2003 Saskatchewan Mental Health Sector Study: Final Report (funded by Saskatchewan Learning and Saskatchewan Health), http://www.sasked.gov.sk.ca/branches/programs/pdf/spp_mental_health.pdf  .  With regard to autism, this report notes:

o       “thirty years of research has now demonstrated the efficacy of applied behavioral methods” (p. 44)

o       “Care providers who are well trained and skilled in applied behavioral treatment methods, the most clearly effective treatment in working with autistic and mentally retarded children, are not available in Saskatchewan.  Post-secondary training programs at the two universities and at SIAST do not offer adequate training opportunities in applied behavioral treatment.” (p. 45)

o       Recommendations:

§         1.2.4 Doctoral programs in clinical psychology at the two universities should enhance training in evidence-based therapy, such as… behavioral treatments for children.

§         3.3.2 Applied behavioral therapy specialists are needed in Community Living (Division) to work with the intellectually disabled

§         4.2.1 the (Health) Quality Council should… monitor access to evidence-based mental health treatments

§         4.3.1 incremental investments in social housing for the mentally disabled are required

§         4.4.4 Incremental funding for mental health is necessary in order to act on a reasonable number of the recommendations.

• 2001 Disability Action Plan submitted by the Office of Disability Issues
• physio, occupational and speech therapy services resources are unable to meet demands
• insufficient programming to meet the needs of children with autism
• adults with chronic disabilities do not have access to therapeutic services to enable them to maintain functional skills gained
• need for timely diagnosis and follow-up
• lack of support for parents and caregivers, including parents and caregivers of older children
• need to address psychiatric disorders differently from physical disabilities
• participant fees are barriers with regard to health services
• 1999 report of the Autism Task Team
• Saskatchewan Action Plan for Children
• Also called the Child Action Plan
• Addressed by the Saskatchewan Council on Children (who do not respond to correspondence)
• A provincial strategy to enhance well-being of Saskatchewan children, youth and families using common approaches to children’s issues
• (Note: common approaches to children’s issues are shown by published research to be ineffective for children with ASD; autism requires a very specific approach using specific methodologies; published research also indicates generic methodological treatment approaches for autism are not effective)
• Autism Discussion Group & Saskatchewan Health autism brochure
• Provides an overview of autism characteristics and considerations when assessing treatment options
• Listing of services clearly indicates that treatment is not available

·        The Education Act (1971), Section 186: “boards of education (shall) provide appropriate education programs for all children”

·        The Principle for Educational Excellence: “Because we believe in educational excellence… expectations are clearly defined and students are provided with the supports necessary to achieve their best”

·        Our Children, Our Communities and Our Future – Equity in Education:” A Policy Framework August 1997 (Saskatchewan Education): “Schools in Saskatchewan are committed to equitable educational opportunities”

·        Saskatchewan Human Rights Code: Section 13(1): “Every person (and …every class of persons) shall enjoy the right to education…without discrimination on the basis of a prohibited ground other than age.”

Autistics need special treatment

September 27, 2005

I write regarding the article "Cognitive disabilities: Province-wide support promised" by Erin Morrison, that appeared in the Sept. 17 edition of the Leader-Post.

The provincial Cognitive Disabilities Strategy appears to be a step forward for people with Autism Spectrum Disorders (ASD) and their families. However, the reality may be affected by the lack of autism-specific requirements for the consultants being hired.

It is very interesting that the advertisement for the Regina Area Cognitive Disability Group Consultant, which ran in the Sept. 3 edition of the Leader-Post, indicated no requirement for the person in this position to have any knowledge of applied behavior analysis. This is a disappointment since the 2003 Saskatchewan Mental Health Sector Study: Final Report (funded by Saskatchewan Learning and Saskatchewan Health), notes: "Thirty years of research has now demonstrated the efficacy of applied behavioral methods" (p. 44), and "Care providers who are well trained and skilled in applied behavioral treatment methods, the most clearly effective treatment in working with autistic and mentally retarded children, are not available in Saskatchewan. Post-secondary training programs at the two universities and at SIAST do not offer adequate training opportunities in applied behavioral treatment." (p. 45).

To address this, the report recommended that "Doctoral programs in clinical psychology at the two universities should enhance training in evidence-based therapy, such as . . . behavioural treatments for children", and that

"Applied behavioural therapy specialists are needed . . . to work with the intellectually disabled".

In the article, Health Minister John Nilson is quoted as saying, "And so now what we'll have is one place where people can go, and then the tools are there to help them."

If the professionals hired to assist people with Autism Spectrum Disorders and their families through this provincial initiative are not required to have the skills that are clearly recommended to the government in its own report, how will it be possible for Nilson's comment to come true?

Lisa Simmermon

Simmermon is public relations director, Saskatchewan Families for Effective Autism Treatment.

Regina

© The Leader-Post (Regina) 2005

Brad Wall, Leader, Saskatchewan Party (March 2005): from a letter to SaskFEAT President Lynn Verklan – if the Saskatchewan Party forms the next government, they "will work with all stakeholders to provide necessary treatment and services for autistic children."

Government of Saskatchewan Caucus Committee on Human Services (February 2005) to the Saskatchewan Minister of Health, the Hon. John Nilson: "The presentation from Saskatchewan Families for Effective Autism Treatment concerned issues surrounding the support of autistic children and adults that need review, one in particular being the availability of behavioral therapists. The committee was impressed with the commitment of the parents and families of people with autism and encourages you to look for ways to improve their lives from diagnosis to therapies, work opportunities and family support"

Following is a news release from the Regina Qu’Appelle Health Region.  Also included at the bottom is some background information on the new doctor (she has experience with ASD's)
-Laura

*News Release*

Pediatric specialist recruited to Regina Qu’Appelle Health Region
September 14, 2005

The Regina Qu’Appelle Health Region has been successful in recruiting a new pediatric specialist to join its medical staff. The arrival of this Developmental Pediatrician, who has expertise in cognitive disabilities in children, will allow the Region to enhance services to children and their families across southern Saskatchewan.

“We are pleased to welcome Dr. Susan Petryk and we look forward to working with her,” says Dave Hedlund, Executive Director of Mental Health and Addictions Services, Regina Qu’Appelle Health Region. “Her experience and expertise in the diagnosis and management of children with developmental disabilities, will help the Region provide more services to the children and families of southern Saskatchewan.”

Dr. Petryk comes to RQHR from the University of Alberta, in Edmonton, where she was a Consultant Developmental Pediatrician. She was also a consultant with Capital Health Region’s Autism Follow up Service and a consultant to the Children’s Mental Health Enhancement for Neurodevelopmental Clinics.

Dr. Petryk, who began working in RQHR on September 6, is the only Developmental Pediatrician in southern Saskatchewan. She will provide services to the Region’s Child and Youth Services and the Children’s Program at Wascana Rehabilitation Centre.

RQHR’s Physician Recruitment and Retention Office welcomes Dr. Petryk to the medical staff and thanks all those whom were instrumental in her recruitment. The Region also appreciates the funding it received from Saskatchewan Health in recruiting our new pediatric specialist to Regina, which dovetails with the provincial cognitive disabilities strategy.

Since the beginning of 2005, Regina Qu’Appelle Health Region has recruited 32 new family physicians and specialists to serve patients across the Region.

****Background Information on Dr. Susan Petryk, Developmental Pediatrician
September 14, 2005

• Comes to Regina from Edmonton, Alberta, where she was:
  
  
  • Consultant Developmental Pediatrician at the Glenrose Rehabilitation Centre and Grey Nuns Community Hospital.
    
    
  • Consultant with Capital Health Autism Follow up Centre.
    
    
  • Consultant to the Children’s Mental Health Enhancement for Neurodevelopmental Clinics.
    
    
• Completed her pediatric residency at Dalhousie University in Nova Scotia.
  
  
• Completed her fellowship in Developmental Pediatrics at the University of Alberta in 1998.
  
  
• Will work with children, from southern Saskatchewan, aged two to 18 years with common developmental issues, including:
  
  
  • Attention Deficit Hyperactivity Disorder
    
    
  • Autism Spectrum Disorders
    
    
  • Emotional and Behavioural Disorders
    
    
  • Fetal Alcohol Spectrum Disorders
    
    
  • Learning disorders
    
    
  • Other developmental delays/disorders
    
    
• Began work in Regina Qu’Appelle Health Region on September 6, 2005.
  
  
• Will provide services to the Region’s Child and Youth Services and the Children’s Program at Wascana Rehabilitation Centre.

Public Affairs
Regina Qu'Appelle Health Region
September 14, 2005

THIS IS A RESPONSE TO A PETION # 381-0702 THAT WAS READ BY BRIAN FITZPATRICK (PRINCE ALBERT) DATED APRIL 7/2005.

SUBJECT: HEALTH CARE SERVICES (AUTISM)

RESPONSE:

AS CANADA'S FEDERAL HEALTH INSURANCE LEGISLATION, THE CANADA HEALTH ACT REQUIRES THAT HOSPITAL AND PHYSICIAN SERVICES THAT ARE MEDICALLY NECESSARY MUST BE COVERED BY PROVINICIAL AND TERRITORIAL PUBLICLY FUNDED HEALTH INSURANCE PLANS.  SINCE BEHAVIOURAL THERAPY SERVICES FOR AUTISTIC CHILDREN ARE PROVIDED OUTSIDE OF HOSPITALS BY NON-PHYSICIANS, THE CANADA HEALTH ACT AND ITS CRITERIA AND CONDITIONS DO NOT APPLY TO THESE SERVICES.

IN ADDITION TO THE SERVICES SET OUT IN THE CANADA HEALTH ACT, PROVINCES AND TERRITORIES MAY CHOOSE TO COVER OTHER PROGRAMS AND SERVICES UNDER THEIR PUBLICLY FUNDED HEALTH INSURANCE PLANS.  IN THE CASE OF BEHAVIOURAL THERAPY FOR AUTISTIC CHILDREN, CERTAIN PROVINCES AND TERRITORIES COVER A PORTION OF THE COSTS OF CERTAIN FORMS OF BEHAVIOURAL TREATMENT FOR AUTISTIC CHILDREN.

AS SUCH SERVICES FALL WITHIN THE JURISDICTION OF PROVINICIAL AND TERRITORIAL GOVERNMENTS, IT IS UP TO THE PROVINCIAL AND TERRITORIAL GOVERNMENTS TO MAKE THE DIFFICULT CHOICES AROUND PUBLIC FUNDING FOR NON-HOSPITAL AND NON-PHYSICAN SERVICES.  THE FEDERAL GOVERNMENT CONTINUES TO SUPPORT THIS APPROACH, WHICH IS RESPECTFUL OF PROVINCIAL/TERRITORIAL JURISDICTION IN HEALTH.

THE FEDERAL GOVERNMENT IS ALSO SUPPORTIVE OF HELPING TO IMPROVE OUR UNDERSTANDING OF AUTISM AND WAYS TO TREAT IT.  ON NOVEMBER 4,2004, THE HONOURABLE LUCIENNE ROBILLARD, IN CONJUNCTION WITH DR. MICHAEL KRAMER OF THE CANADIAN INSTITUTES OF HEALTH RESEARCH (CIHR), ANNOUNCED THE AWARD OF OVER $6 MILLION TO THREE RESEARCH TEAMS TO STUDY THE COGNITIVE AND BEHAVIOURAL DEVELOPMENT OF INFANTS, CHILDREN AND YOUTH, INCLUDING OVER $2 MILLION TO A TEAM LOOKING AT WAYS TO ENSURE BETTER OUTCOMES FOR PEOPLE WITH AUTISM SPECTRUM DISORDER.  IN TOTAL, THE CIHR IS SUPPORTING OVER 30 GRANTS AND AWARDS RELATED TO AUTISM RESEARCH, EQUALLING AN ESTIMATED MULTI-YEAR COMMITMENT OF $16.2 MILLION.

Letter to the Editor - The Leader Post

May 2, 2005

I would like to comment on the recent announcement regarding the $146M funding for child care in Saskatchewan presented by Prime Minister Paul Martin at YMCA last week. While clearly this is a good thing for our province and for the children of our province, I would like to direct some concerns to both our provincial Health Minister John Nilson, Education Minister Andrew Thompson, and the provincial minister in attendance, Saskatchewan Community Resource Minister Joanne Crofford, as to how they will use some of this funding to help autistic children, and specifically my 3 year old son, in our province? Currently Saskatchewan is the only Canadian province without a current or planned provincial autism treatment program. During the province’s recent budget address Finance Minister Harry Van Mulligen made the statement "It’s all about our first duty to protect the most vulnerable members of society. It’s all about helping Saskatchewan people to build successful lives." How sad no one in our provincial government values our autistic children with special needs enough to do something about providing the services they need. No one assists us to pay for a private speech therapist, or other services our son could truly benefit from receiving. With Autism Spectrum Disorder cases increasing between 10 and 15 percent each year, and now being at a level in our province where every school and community is affected by autism (about 1 in 200 students), this is an issue of growing importance and it will not be going away. There are now about 900 students in Saskatchewan with an Autism Spectrum Disorder and only 6 are provided with comprehensive treatment for their autism in Saskatoon, Regina has no comprehensive program. The Autism Resource Centre in Regina has a waiting list of over four years because of serious problems with lack of proper funding and an ever increasing need for their services.

It’s very disappointing that no provincial politician is willing to take up this challenge and provide some needing funding and programs for autistic children and their families in this province. There is no easy solution to this, but it would be nice for someone to make an effort, learn from what others have done in jurisdictions where programs are in place, and then get to work and do something about it.

Concerned parent of a 3 year old autistic son

Joy-Ell Sahlmueller.