Key Autism Issues in Saskatchewan

Backgrounder

 

 

 

 

 

 

 

 

 

December 15, 2004

 

 

Prepared by Lisa Simmermon

National Representative for Saskatchewan Families for Effective Autism Treatment and
Past President of Autism Society Canada

 

Key Autism Issues in Saskatchewan

 

 

Summary of Issues

 

 

 

 

 

·       there is a need for a provincial autism scientifically validated effective treatment program

 

 

·       special programs in Saskatchewan should meet the needs of people with Autism Spectrum Disorders (ASD), in particular the respite subsidy program

 

 

·       school programs for people with ASD should meet internationally recognized standards

 

 

·       Accessibility and accommodation issues of people with ASD need a perspective that is in keeping with their needs

 

 

·       Services and supports for adults with ASD need improvement, and must be preceded with and include reasonable access to effective treatment

 

 

·       Need to develop autism research in Saskatchewan

 

Issue: there is a need for a provincial autism scientifically validated effective treatment program

• Autism numbers have been rising continually in Saskatchewan and other provinces for more than 6 years (see Autism Society Canada’s 2003 Autism Facts in Canada)
• Saskatchewan number of students with ASD rose 159% from 1998/99 to 1003/04; there were 694 students in the school system with ASD in 03/04, which means that there were more than at least 700 cases last year counting preschoolers not in the school system and adults, with a probability of closer to 800 cases in total. We do not have figures for this year.
• International number of ASD cases has been rising dramatically for the past ten years; research indicates that neither better diagnosis or genetics can account for the increase in reported cases: there is an actual increase in number of ASD cases
• Family requests for provision of Applied Behavior Analysis (ABA) treatment have been refused for a period of 8 years
• Information has been provided to government regarding the efficacy,  short as well as long-term outcomes and cost benefit analysis of ABA (see Autism Society Canada’s Autism Effective Treatment Rationale and 2003 Autism Facts in Canada), including the reality that this methodology has
• the largest body of scientific validation in the form of published research, including reviews of effective autism treatment programs in the US
• parent and professional manuals
• a system for accreditation of professionals
• support by hundreds of court actions across North America
• ABA is provided to children of all ages by other provincial and territorial governments (see Autism Society Canada’s Autism Treatment and Services summary)
• Saskatchewan Learning unpublished data information provides the possibility to estimate average age of diagnosis, which is currently age 8.3; many youth are being provided with ASD late diagnosis, and they require the opportunity to access effective treatment
• Auton case ruling from the Supreme Court of Canada November 19, 2004 indicated that provincial governments do not have a legal obligation to provide effective autism treatment under the core benefits identified by the Canada Health Act; however, treatment can be provided under the non-core benefits if there is political will for a provincial government to identify accredited behavior consultants and therapists as health care providers
• Autism treatment for 2004-2005 would probably involve about 100 preschoolers and 800 school age students with ASD.  Funding is required for scientifically validated effective treatment over and above the incremental funding provided to special needs students through Saskatchewan Learning which is to enable education.  A full funding program could look like:
  100 preschoolers x $60,000 = $6 million (ABA $50,000, OT $5,000, ST $5,000)

800 school age x $30,000 = $24 million (ABA $20,000, OT $5,000, ST $5,000)

Total $30 million (for 2005-2006, and which would probably increase to $34 million the next year, and an additional 10 - 15% each subsequent year)

·        People could choose to use social pragmatic methodology in a centre-based program since it does have a small body of scientific validation (such as the Autism Treatment Program in Saskatoon)

• Saskatchewan Autism Discussion Group recommendations for early intervention treatment program were declined by the Saskatchewan Government
• Autism Task Team of the Office for Disability Issues  recommendations for a provincial early intervention treatment program were declined by the Saskatchewan Government
• 6 children in Saskatoon are provided with a comprehensive autism treatment program (speech therapy <communication challenges which are always present in ASD), occupational therapy <motor skill challenges which are almost always present in ASD)  and interaction instruction using social-pragmatic (play-based) methodology
• this program began as a pilot, and is now a permanent program jointly funded by the Saskatoon Board of Education and Saskatoon Health Region
• the program has not produced any data to provide information regarding its degree of efficacy
• professionally delivered ABA always includes data collection and analysis so that progress can be monitored and programming can be adjusted
• Speech and occupational therapy specific to the needs of children with autism is only very rarely available in our province; many parents pay for these services privately in or out of province
• Physicians are not provided with training in the diverse medical conditions that most often co-exist with ASD (immune system anomalies, digestive system problems, heavy metal toxicity, seizures, metabolic anomalies); children with ASD most often have to go out of province to access physicians who have this training and who are willing to treat the unusual medical issues in children with ASD
• There are no diagnosticians in Regina with specialized ASD diagnosis and assessment training; there are only a few in Saskatoon
• Diagnosticians are required to obtain this training at their own cost
• Diagnostic tools training is organized and tools trainers prepared by the University of Michigan Autism and Communication Disorders Centre http://www.umaccweb.com/diagnostic_tools/index.html
• There is one Canadian trainer for each of the two diagnostic tools
• The Mental Health Advisory Council which advises the Minister of Health and senior officials in Saskatchewan Health on policies, programs, priorities and resources aimed at meeting the mental health needs of the people in Saskatchewan does not appear to include any adults with ASD or accredited ASD treatment experts

Related documents

• 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
• 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
• 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
• 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
• Saskatchewan Health Mental Health Services indicates that its purpose is to “promote, preserve and restore the mental health of the population”
• Child and Youth Services indicates it offers behavioral assessment and treatment, however, there are no accredited professional behavioral consultants trained in autism treatment
• Health regions provide some support to regional autism service providers
• Regina Autism Resource Centre
• waiting list of more than a decade
• offers a weekly social skills program and 3 hours per week of a home-delivered developmental methodology for basic vocational-oriented programming
• provides excellent post diagnosis assessment of skills and needs (but only for clients)
• Autism Treatment Services of Saskatchewan
• Provides a home support program, various activity programs, a residential program and parent support

 

Issue: special programs in Saskatchewan should meet the needs of people with Autism Spectrum Disorders (ASD), in particular the respite subsidy program

·        administered through the Community Living Division (CLD) of Community Resources and Employment (CRE)

·        provides a subsidy of about half of minimum wage for a small number of hours per month

·        in theory, program information states that it is for families of people with intellectual disabilities (which would most certainly include ASD)

·        in reality, it is only for families of people with one particular intellectual disability (mental retardation)

·        families of people with ASD with intact IQ must appeal to the Minister of CRE to acquire access to the respite subsidy program

o       the process can take many months

o       this information is not provided to families

Relevant documents

• Canadian Human Rights Commission
• “A special program must be tailored to meet the actual needs of the disadvantaged group”
• 2004 Report of the Saskatchewan Children’s Advocate
• expressed concerns about CLD of CRE about difficulty accessing services such as respite to assist with caring for a child with disabilities at home
• 1999 report of the Autism Task Team

 

Issue: school programs for people with ASD should meet internationally recognized standards

• currently very often less than appropriate
• “appropriate” is not defined in the Education Act, so there is little ability to rationally dispute programming.
• “Appropriate” is articulated by the Regina Board of Education as the opportunity to benefit
• The reality is that you can place a child in a library, but if you do not help that child gain the skills to read, the opportunity to benefit is negligible
• Efforts to address complex issues requiring considerable expertise try to be addressed through Saskatchewan Learning’s ACCESS workshops, but this mechanism is not comprehensive enough to effect province-wide significant improvement of program development, delivery and supervision
• Almost always not in line with published standards
• Most often do not include the supports necessary for an ASD student to achieve his/her best
• See
• Autism Program Quality Indicators: A SELF-REVIEW AND QUALITY IMPROVEMENT GUIDE FOR SCHOOLS AND PROGRAMS SERVING STUDENTS WITH AUTISM SPECTRUM DISORDERS; The University of the State of New York, New York State Education Department; Office of Vocational and Educational Services for Individuals with Disabilities Albany, NY 12234; August, 2001; http://web.nysed.gov/vesid/sped/autism/apqi.htm
• Educating Children with Autism:
  Catherine Lord and James P. McGee, Editors, Committee on Educational Interventions for Children with Autism, National Research Council 300 pages (approximate), 6 x 9, 2001; National Academies (U.S.) NATIONAL RESEARCH COUNCIL; Division of Behavioral and Social Sciences and Education; Board on Behavioral, Cognitive, and Sensory Sciences and Education; June 13, 2001; http://books.nap.edu/catalog/10017.html?onpi_newsdoc06132001

•  In the US, there is federal legislation mandating that the needs of children with disabilities must be met through programming delivered in the school and after school (on holidays, at home, etc.)
• in Canada programming for children with ASD is
• determined by autonomous school boards that are not required to meet provincial or national standards
• not required by law to meet standards of any kind
• lack of treatment negatively impacts a child’s right to an education

Relevant documents:

• 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.”
• 2004 Saskatchewan Children’s Advocate Report: 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

 

Issue: Accessibility and accommodation issues of people with ASD need a perspective that is in keeping with their needs

• accessibility and accommodation issues for people with psychiatric disorders can not be met with accessibility and accommodation initiatives for physical disabilities
• accommodations are often required such as reduced noise, visual stimulation levels, limiting proximity to large groups and crowds, use of computers instead of handwriting, as well as support and flexibility for unexpected  situations or planned changes

 

Issue: Services and supports for adults with ASD need improvement, and must be preceded with and include reasonable access to effective treatment

• the number of adults recognizing that they have a form of autism is increasing
• they can not find trained ASD adult diagnosticians
• there is no recognized ASD adult diagnostician in our province
• there is a need for a specialized ASD work training and support program such as Mission Possible in Toronto http://www.anythingispossible.ca/home.htm
• most child ASD diagnosticians will not work with adults
• 2004 Federal Budget increase in funding to launch the Multilateral Framework for Labour Market Agreements for Persons with Disabilities is good, but does not address the reality of lack of services for adults, including ASD trained personnel for diagnosis, assessment and supports adulthood
• housing and housing support staff issues for the needs of adults with ASD need

Related documents:

• 2004 Federal Budget increase in funding to launch the Multilateral Framework for Labour Market Agreements for Persons with Disabilities

 

Issue: Need to develop autism research in Saskatchewan

• In 2002/03, neither Autism Society Canada or the BC Michael Smith Foundation for Research were able to identify any ongoing autism research in Saskatchewan
• In 2003 there was one research project being carried out by one professor at the University of Regina (Dr. Anthony Thompson)

Related documents

• Autism Society Canada White Paper: Canadian Autism Research Agenda and Canadian Autism Strategy, March 2004
• Michael Smith Foundation for Research (BC) Inventory of Autism Research in Canada (2003)