THE TISDALE RECORDER   WED., NOVEMBER 21, 2001

   U.S. AUTISM SPECIALIST IN TISDALE AND NIPAWIN

BY PEGGY TODD

           Though several local families have been fortunate to access the expertise and knowledge of a U. S. based autism expert in the development of a treatment program for their children, the lack of an universally effective treatment provision for those diagnosed with autism in this province may soon result in the launch of a class action lawsuit against the government by families affected by the disorder.

          Saskatchewan is currently one of only four Canadian provinces that has not taken legal action in an effort to accelerate change in the provision of an effective treatment for a disorder in which time is of the essence.  Research indicates the accurate and early diagnosis of autism coupled with the early initiation of an effective treatment program are essential in ensuring a positive long-term outcome for those diagnosed with the disorder.

          With little progress toward guaranteeing the universal provision of these basic support services, Saskatchewan families with autism have been forced to take matters into their own hands.  Unfortunately, for many families, accessing effective treatment comes at a cost and the financial burden faced by some is simply too much.

          Though Saskatchewan families affected by autism have not sought legal recourse yet, that does not mean they haven’t been toying with idea.

“It’s in the back of our minds,” stated Lynn Verklan of Nipawin, president of Saskatchewan Families for Effective Autism Treatment (SASKFEAT).  “But, as much as I’d like to do it, I have to focus my energy on what I’m doing for my son.”

          “I do think a lawsuit will come forward in Saskatchewan with the next year or two,” she added.

          The Verklan’s, three families from Tisdale, and a family in Swift Current are involved in an autism treatment program known as Applied Behavior Analysis (ABA).  The program is being supervised and developed by Dr. Janet Butz of Las Vegas, Nevada, who recently spent a week working with the families, therapists, schools and teachers that work directly with the children in the five families involved.

          Butz, who is originally from Nipawin, is an expert in the field of autism, receiving her education at the University of Saskatchewan, California State University Dominguez Hill, and Rutgers State University as well as training in the use of the best autism condition diagnostic assessment tool, the Autism Diagnostic Observation Schedule (ADOS).

In addition, Butz is also in the process of completing her Board Certified Behavior Analysis (BCBA) certification.

          Butz has been integral in the consultation, training, development, implementation, and supervision of the ABA program currently being accessed by the five Saskatchewan families utilizing her services.  “I think she finds it very rewarding,” Verklan stated, adding Butz works full-time in a Las Vegas school, has a family, and sits on a variety of committees in addition to working with the local families.  “I think her biggest high comes from working with these kids.  She feeds off their energy.  She’s made a huge commitment to these families in Saskatchewan personally.”

          In a province that is sorely lacking in support services, programming and professionals trained to deal with autism, Butz has proven to be a critical and valuable resource for the five families currently accessing her expertise.  Though six Saskatchewan children are currently benefiting form an excellent Autism Early Childhood Therapy pilot program in Saskatoon, the rest of the province’s nearly 500 autistic children and their families have been largely been left to look after themselves.  Even through the best efforts of their local communities however, the majority of autistic children are not receiving effective treatment.

          And, unfortunately, the number of cases of autism diagnosed in Canada over the past two years has seen an average increase of 63 percent.  In Saskatchewan alone, the number of reported cases of autism conditions has rise at the startling rate of almost 80 percent in two years.

          “It’s almost becoming an epidemic,” Verklan commented.  “There’s a ton of research going into it.  The diagnostic tools are definitely better but the incidence of it seems to be high too.  They’re looking at genetics and the environmental stimulants that could be causing it.”

          Effective treatment programs are most successful the earlier they are initiated and sadly, diagnosis among Saskatchewan children can lag up to six years behind that of children in the U.S.  “All research says, regardless of the methodology used, the sooner, the better.  The sad fact is in Saskatchewan most children aren’t diagnosed until they’re eight years old,” Verklan said, adding two years is the average in the U.S.  Research also indicates treatment is most effective when initiated by age four.

          Though discussions with Saskatchewan Health, Education and Social Services have been ongoing for years, very little headway has been  made in the quest to obtain a universal provision for effective autism treatments and adequate support.  Presently, Saskatchewan Health takes

responsibility for children until they are five years old, providing funding assistance to access services such as those provided by an occupational therapist.  Saskatchewan Education will provide funding for a teacher assistant and access to educational programming beginning at the preschool age.  However, in both cases, coverage dose not include any effective autism treatment programming.

          Parents in the northeast have taken the matter into their own hands and  have been fortunate to access the services ad expertise of Butz to fill the void in adequate treatment programming.  According to Verklan, the three families in Tisdale utilizing Butz’s services are also fortunate to have the additional support of the Tisdale School Division, The Pasqua Health district, and the North East Early Childhood Intervention Program (NEECIP) in maximizing local support service provisions through the recent opening of the Learning Support Centre in Tisdale Elementary School.

          “Tisdale is way further ahead than Nipawin,” Verklan commented, with reference to the Learning Centre’s preschool program which includes both typical and non-typical children in the classroom setting.  Rather than segregating the two, the Learning Centre program encourages interaction and socialization, an integral concept in the effective treatment of autistic children.

          In Tisdale, children attending the Learning Support Centre also have direct access to the services of an occupational therapist and other specialists services within the school.  Currently, students attending a similar preschool setting in Nipawin do not have access to either a locally based speech and language therapist or an occupational therapist, according to Verklan.  “Even the support we’re supposed to get isn’t there because there’s a shortage of professionals so it’s hard to even access them,” Verklan said.  “It’s a vicious circle.  There is a lot of people passing the buck.”

          Dr. Butz is providing the effective training and treatment programming services that the government will not.  Butz’s services include evaluation of the children and the development of ABA treatment programs specific to the needs of each individual child.  She also provides training for the therapists hired by each family to work directly with their children, re-evaluating both the children and the therapists to ensure their treatment programs and applications are being maximized.

          With all of the Tisdale and Nipawin children involved in the ABA programming currently at the Kindergarten and Grade I age levels, Butz  also begun working with their teachers and teacher assistants in an effort to provide effective training, continue program development and ease the transition from the home to the school system.  Butz’s recent visit to the TES Learning Support Centre provided staff with valuable feedback and suggestions on methods to enhance the program currently being delivered to students.

          Butz dedicates at least one full day per family per visit for consultation, evaluation and training which, ideally should occur at least once every two months.  The costs associated with these visits are the source of the greatest frustration for the families of the children Butz is treating as the provincial government does not provide any funding assistance.

          For the Verklan family alone, Butz’s visits amount to between $1500 and $1800 per visit and they are more fortunate than many.  Because Butz still has family in Nipawin, the Verklan’s and the Tisdale families are not responsible for covering the cost of accommodations.  In addition, airfare costs are split four ways.

          The consultation fees, paying the costs associated with training all of the therapists involved in working with their children, the cost of materials used for programming and training, paying the therapists to work with their children, and all costs associated with correspondence with Butz comes directly out of each family’s pocket.  Though a significant financial commitment for each family, all would agree the end justifies the means.

          With one year under Butz’s supervision and training, the Verklan’s son is the veteran among the Tisdale and Nipawin group.  And in that relatively short period, the Verklan’s have noticed significant changes in their son.

          “Probably the biggest difference is his ability to listen and do things that I ask of him.  We definitely have our bad days but his overall behavior… he’s not screaming or melting down for hours everyday,”  Verklan stated.  “He’s acquiring the language to tell us what he wants.”

          “As a parent, until we started working with Jan, we did everything we could to make our life the easiest we could by just giving in.  Jan taught us not to do that,” she continued.  “It’s little things most parents take for granted.  When Joel achieves them we’re very proud of him, even with simple things like potty training.”

          “With a prevalence of autism in this province of 1 in 385, every community and almost every school in Saskatchewan is now dealing with issues surrounding autism.  Saskatchewan Society for the Autistic (SSFTA) encourages all families with a member with an autism condition to contact them in order to add their name to a provincial database.

          Through the national parent organization, Autism Society Canada, the SSFTA is actively involved in advocating the federal government for the development and application of best practices-based autism national standards through the creation of an Autism Secretariat with Health Canada.  The SSFTA is also encouraging families to file letters of complaint with their regional UNICEF office and Provincial Children’s Advocate regarding the lack of a universally effective autism treatment provision. 

          “With a lifetime estimated cost of $2 million for people with autism conditions for whom treatments are ineffective, inappropriate or inaccessible due to political or financial reasons, the increase in reported cases means that our society faces significant financial consequences.  However, research has shown that those costs can be cut in half with the provision of an accurate and early diagnosis, effective autism treatments based on best practices, and adequate family support,” concluded Lisa Simmermon, SSFTA and ASC president.

          Dr Butz will be returning to Tisdale and Nipawin in December to continue her work with local families.  She will also begin working with a family from Regina in January.  For more information on ABA and Dr. Butz contact SASKFEAT at (306) 862-4768.