Adult Autism Care in New Brunswick Is Our Top Autism Priority

The Daily Gleaner makes brief mention of the Oscars for Autism event held Saturday Night at the Delta Fredericton.

Neil Lacroix and Kim Gahan of Autism Connections Fredericton, and Brian Jones of TD Waterhouse, deserve applause for their hard work in making the Oscars for Autism event a huge success. Stan Cassidy Centre developmental pediatrician, Dr. Tara Kennedy, a great asset for New Brunswick's autistic children, gave an excellent overview of autism disorders. Psychologist Paul McDonnell was recognized for his outstanding contributions to autistic children in NB. Parents of autistic children who fought for autism services, the many civil servants and front line workers who provide them, and the leaders who responded, former Premier Lord and Premier Graham, were all saluted.

NB is literally a world leader in providing evidence based services to autistic children and the people of NB as a whole deserve credit. We must focus now on those autistic youths and adults who require what is currently lacking - a decent residential care system to provide for them when families no longer can.

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A New Brunswick Autism Dad's Open Letter to Dr. Susan Bryson re Nova Scotia's Immoral Autism Lottery

May 1, 2009

Dr. Susan Bryson, PhD
Joan and Jack Craig Chair in Autism Research
Pediatrics, Dalhousie University


Dear Dr. Bryson

I am writing you this open letter (also posted on my blog site Facing Autism in New Brunswick) to express my concerns about Nova Scotia's lottery system of autism service delivery a system which, in my respectful opinion, is immoral. I do not believe that something of such importance to the life and well being of a child with a serious neurological disorder should depend upon a system of chance. I do not believe that such a system can be rationalized in a country like Canada which recognizes the desirability of a universal, publicly funded approach to health care. I do not believe that Nova Scotia's lottery system of provision of autism service delivery is consistent with principles expounded in several versions of the United Nations Declaration of the Rights of the Child.

As a lawyer I am also doubtful that the lottery system would survive a challenge under the Charter, notwithstanding the Auton decision, given that, unlike in Auton, the Nova Scotia government has agreed to provide some autistic children with autism specific ABA services and given the further empirical and professional support for ABA since the Auton decision, including the 2007 review by the American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders. I ask that you, with your internationally recognized autism expertise and your acceptance by government authorities in Canada, including provincial governments and the federal CIHR, speak out publicly against the lottery system of autism service delivery in Nova Scotia.

As you are undoubtedly aware, those Nova Scotian families whose autistic children lose out on the Nova Scotia Autism Lottery, and who have the means to do so, leave Nova Scotia in search of services elsewhere. In one well known instance, a husband and wife in that situation, both medical professionals, left Nova Scotia for Manitoba for the autism services available at the St. Amant facility in Manitoba. For famiiles of lesser means whose autistic children do not win the autism lottery .. well .. with your background and expertise you know what awaits them.

I am the father of a 13 year old boy diagnosed with Autistic Disorder and assessed with profound developmental delays and I have been a parent autism advocate here in New Brunswick since my son's initial diagnosis at age 2, a relatively early age of diagnosis 11 years ago. I also have very strong family ties in Nova Scotia where I was born and where my parents and siblings, cousins, nephews and nieces live, including an autistic child in my extended family. I also have friends in Nova Scotia's autism community including Jim Young of FEAT NS who has been a relentless and outstanding advocate for autistic children and adults in Nova Scotia. I am concerned for autistic children and their families who must be subjected to the Nova Scotia autism lottery.

I am also deeply concerned for a more immediate reason. I am concerned that the Nova Scotia lottery model which, on its face, reflects greater concerns for budgetary considerations than for the best interests of autistic children, might influence developments elsewhere in the Maritimes and particularly here in New Brunswick. As an autism advocate here in New Brunswick I can say from personal experience that our autism advocacy community had to overcome many obstacles to develop an autism service delivery model at both the pre-school and school levels that is as good as any that I am aware of in Canada or the United States. And it took time to develop the model we now enjoy.

In 2001, after an Interdepartmental Committee Review (Education, Health, Family Services), the New Brunswick government committed to the principle of provision of evidence based autism interventions. Most autism services are now provided by Autism Support Workers, Clinical Supervisors, Teacher Assistants and Resource Teachers trained at the University of New Brunswick College of Extended Learning.

The UNB-CEL AIT program has been subjected to external review by Dr. Eric Larsson who has commented about the program as follows:

"The current AITP is a remarkable and thorough program that has been developed to an exceptional level of quality in the context of limited resources. The province-wide model is one that many other provinces should adopt, as it carries with it many cost-effective features. The curriculum content requires little modification".

In addition to Dr. Larsson's external review the New Brunswick autism service delivery model has been the subject of presentations by key local professional and administrative personnel at national and international conferences. Dr. Paul McDonnell a clinical psychologist and Professor of Psychology (Emeritus) from UNB has been instrumental in educating New Brunswick parents and in providing clinical autism services to autistic children. He made a presentation on the New Brunswick Autism Service delivery model at the ABA International Symposium, Chicago, May 123-28, 2008. Anne Higgins, Director Professional Development Division, College of Extended Learning, University of New Brunswick, made a presentation on the NB model at the CAUCE (Canadian Association for University Continuing Education) Conference 2008 at the University of Western Ontario.

The pre-school autism interventions are provided by the Autism Support Workers and Clinical Supervisors at several agencies situated around the province. AITP trained Teacher Assistants provide daily intervention and educational assistance to autistic children in neighborhood schools across New Brunswick. The system is not perfect. More work needs to be done but I can tell you as an autism advocate with ties across Canada that some people have actually moved to, or are considering moving to, New Brunswick to seek autism services not available in their home province, including some from Nova Scotia. I have visited Ontario as part of a national autism advocacy campaign last year and I am well aware through the personal friendships that I have developed there, and through my blogging activities and contacts, that Ontario despite its relatively greater wealth, is not even close to New Brunswick in provision of pre-school or school autism services.

In addition to a serious effort by the current government of Premier Shawn Graham and Education Minister Kelly Lamrock to provide autism training to Teacher Assistants and Resource Teachers our schools have also begun to accommodate ABA based education for autistic children in our schools in a variety of settings. Some autistic children, for whom that environment is suitable, are educated for the most part in the mainstream classroom. Others, including my son Conor who is severely autistic, are educated in a small separate room, at our request, where he is not overstimulated and overwhelmed by the mainstream classroom environment. Conor visits common areas of the school for specific periods for limited periods of time with a TA who is UNB-CEL trained and who pays close attention to my son's reaction to his environment and ability to function in different locations. In terms of peer acceptance I can say through personal observation taking him to and from school that that my son has been very well received by other children in the grade school and middle school he has attended in our neighborhood even though his time with them is for brief periods during class time or in common areas of the school.

Apart from these regular pre-school and school services New Brunswick also has an autism specific pediatric tertiary care team at the Stan Cassidy Centre for Rehabilitation in Fredericton. At one time the autism team at the Stan Cassidy was scheduled for closure .... because the overwhelming demand for its services was perceived as a threat to the continued viability of the Stan Cassidy's overall operation. Community and government response to that initial closure decision was such that the decision was reversed. The autism component of the Stan Cassidy team has been rebuilt and now includes a next generation of professional leadership including Dr. Tara Kennedy who has quickly become immersed in, and a very important part of, New Brunswick's autism service delivery model.

These autism services in New Brunswick have been largely built since 2003-2004 while next door Nova Scotia, starting from a similar vantage point, today offers a lottery system of early intervention with little in the way of systemic provision of autism services in schools across Nova Scotia. Here in New Brunswick we had a determined parental autism advocacy community driving much of what has been accomplished. We also had responsive government and political leadership.

Vitally important to what has been achieved though has been the direct and sustained involvement of New Brunswick's academic and professional autism community in helping parent advocates understand what is required, from an evidence based perspective, to help our autistic children. The same people have been engaged in helping government work through and understand the importance of evidence based approaches to autism service delivery. The public involvement of our academics and professionals has been key to what has been achieved in New Brunswick.

I ask you to speak out publicly against the immoral autism lottery system in Nova Scotia. Your expertise, and government trust in you, would surely mean that your views would be given considerable weight by public decision makers. Nova Scotia's autistic children would surely benefit from your public advocacy.

You could consider recommending to the Nova Scotia government that it replace its immoral autism lottery with the more just, equitable, evidence based and province wide model developed here in New Brunswick and recommended by Dr. Eric Larsson.

Respectfully,


Harold L Doherty
Fredericton New Brunswick

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New Brunswick Autism Service Delivery Model At The CAUCE Conference 2008

The New Brunswick Autism Service Model will be discussed at the CAUCE Conference 2008 hosted this year by the University of Western Ontario. CAUCE, the Canadian Association for University Continuing Education, will be holding its 2008 Conference May 27, 2008 - May 31, 2008 at the Hilton London Ontario. Anne Higgins and Sheila Burt will be there for concurrent session 5 on May 30. Discussion of the New Brunswick Autism Service Model will focus on the UNB-CEL Autism Intervention Training Program:

How to Keep the Pieces Together: A Multi-Partnered Community Based Training Program

Anne Higgins, Director, Professional Development, College of Extended Learning, University of New Brunswick

Sheila Burt, Manager, Professional Development Division Delivery Team, University of New Brunswick

In 1998, a University of New Brunswick (UNB) professor and the autism community in the province lobbied the provincial government to fund intervention treatment for pre-school children. Today, the families of autistic children receive multi-partnered, systematized intervention services. The College of Extended Learning (CEL) at UNB is a pivotal partner in this endeavour, providing bilingual training and practicums, as well as holding together the many critical pieces of the complex service delivery. This session will examine the critical pieces that need to be paid attention to in the development and delivery of a multi-partnered, community-based training program and how the CEL has put mechanisms in place to anticipate problems and how these mechanisms are used to respond to multiple unique agendas.

The UNB professor referenced in the above excerpt is Professor Emeritus (Psychology) and Clinical Psychologist Paul McDonnell. Paul was honored by the Autism Society of New Brunswick in 2006 for his contributions to autism in New Brunswick. He is the only person who has been so honored and it is impossible to overstate his role in improving the lives of autistic persons in New Brunswick. He has worked directly with autistic children, educated parents, professionals and public decision makers. Paul has guided the autism community and autism advocates toward effective evidence based interventions for autism and has provided many of the cornerstone elements of the New Brunswick Autism Service Model.

In the excerpt it also states that "the College of Extended Learning (CEL) at UNB is a pivotal partner in this endeavour". I agree completely with that statement. Anne Higgins and Sheila Burt, working with Paul, Barb D'Entremont and Amanda Morgan from UNB have put together the UNB-CEL Autism Intervention Training Program which now provides training to persons working with autistic preschoolers and in New Brunswick schools. The UNB-CEL AIT program is marked by its quality and integrity and ensures that autistic children in New Brunswick receive quality effective evidence based intervention and education.

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New Brunswick Autism Service Delivery Model At ABA International Symposium in Chicago, May 23-28

The New Brunswick Autism Service Delivery Model is one of 4 models that will be presented at the #72 International Symposium of the Association for Behavior Analysis International 34th Annual Convention in Chicago, Illinois from May 23-27, 2008 at the Hilton Chicago. As a parent who saw the establishment and growth of the pre-school autism intervention program here in New Brunswick I am very appreciative of the efforts of Paul McDonnell, Barb D'Entremont, and Amanda Morgan of the University of New Brunswick and Sheila Bulmer of he Province of New Brunswick for what has been accomplished in providing pre-school autism intervention services in New Brunswick. Such services would not be possible without a training program of quality and integrity for service providers such as that provided by Anne Higgins and Sheila Burt at the UNB-CEL Autism Intervention Training Program. I thank you all and the other dedicated people at UNB, and with the Province of New Brunswick, who have given New Brunswick's autistic children access to effective evidence based autism treatment.

#72 International Symposium Intensive Early Intervention: Organizational Design, Evaluation and Management of Comprehensive Systems in Diverse International Locations BACB CE Offered. CE Instructor: Eric Larsson, Ph.D., BCBA

5/24/2008
3:30 PM - 4:50 PM
Continental B
AUT/OBM; Service Delivery
BACB CE Offered. CE Instructor: Eric Larsson, Ph.D., BCBA

Intensive Early Intervention: Organizational Design, Evaluation and Management of Comprehensive Systems in Diverse International Locations
Chair: Eric Larsson (Lovaas Institute Midwest)

The applied behavior analysis of Intensive Early Intervention for children with autism is conducted at many different levels of resolution. All levels of ABA are necessary to effectively manage the best possible outcomes for the greatest number of children. In order to build a sustainable program, numerous issues in accountability and management must be addressed. This symposium will present the results of four different organized systems for delivering and managing treatment efficacy. The management procedures of the organizations will include the molecular levels of ABA (single-subject analyses of all facets of treatment; component and package analyses of all facets of treatment; analysis of maintenance of treatment effects; analysis of the limits of generality of the treatment); the intermediate analysis of staff training, parent training, consumer responsiveness, and the organizational management necessary to sustain the treatment; and long-term traditional epidemiological analyses of consumer validity, cost-effectiveness and social validity to provide overall guidance to organizational design. Cultural and language issues will also be addressed. Current results of these organized systems will be presented.

St. Amant Applied Behavior Analysis Program: Publicly-Funded Centralized Early Intensive Behavioral Intervention. DANIELA FAZZIO (University of Manitoba/St. Amant) and Angela Cornick (St. Amant, Canada)

Abstract: The St. Amant ABA Program Preschool Services has operated since September 2002, serving 58 children in a home-based model (36 weekly hours, one-to-one, 3 years) funded by the Province of Manitoba to eligible children (diagnosis of Autism, Autism Spectrum Disorder, Asperger’s Syndrome, and PDD-NOS, under 5-years-old at intake, resident of Manitoba). Transition to group settings with program staff is planned based on client characteristics and school entry approach. The Program adopted the ABLLS® as a curriculum guide and evaluates group outcomes yearly (normative and criterion assessments of development, language, cognitive, adaptive skills and challenging behaviors, discrimination abilities, autism characteristics, and ABLLS skill acquisition.) Treatment is based on ABA principles and procedures with emphasis on discrete- trials teaching, is designed and supervised by ABA consultants (caseloads of 8) with graduate training in behavior analysis. Procedures are individualized, based on a standard package for skill acquisition and functional assessment and communication training for behavior problem reduction. Senior yutors (caseload of 4 clients) assist in training and supervision of tutors (caseloads of 2 clients) and parents, data collection (trial-by-trial) and summary. Overall supervision is provided by BCBA and licensed psychologist.

Meeting the Challenge of Organizational Development in Diverse Language and Cultural Contexts in Spain. VICTOR RODRIGUEZ GARCIA (Fundacion Planeta Imaginario) and Melissa J. Gard (Lovaas Institute Midwest)

Abstract: One of the challenges in replicating Lovaas’ 1987 outcome study is to translate the methods and evaluation procedures into other languages. This presentation will describe the organization and results of a privately-funded clinical intervention program in Catalonia, Spain, where there are actually two very different languages in predominance. This organization has been in the process of development for 14 years, and has met several challenges required to translate social and language norms, methods, and measurements into these other languages and cultures. In addition, the need for developing a comprehensive organization, in the face of little to no formal funding have also been addressed. Critical demands for treatment integrity will be reviewed, as well as systems that are being developed to meet these demands. The overall organizational design will be presented, as well as direct clinical data on short-term gains made by children in the program. The presentation will conclude with a focus on the directions of further development.

From Zero to 300: Development of a Comprehensive Preschool Intervention Program from “Scratch” in the Province of New Brunswick. PAUL M. MCDONNELL, Barbara D’Entremont, and Amanda Morgan (University of New Brunswick)

Abstract: This presentation describes the establishment of a preschool intervention in a largely rural Canadian province. When the initiative first began, there were virtually no services and no trained therapists or Clinical Supervisors anywhere within the province. After four years, there are now more than 300 trained therapists working throughout the province. The process of how supervisors and therapists were trained and how services were delivered on a province-wide basis is discussed. Special challenges included delivery of services in New Brunswick’s two official languages (French and English), delivery of services to First Nations children, and delivery of services to rural settings. Furthermore, a sample of outcomes from our first year of the province wide intervention is described. These data allow for the comparison of children in day care settings receiving eclectic programs with children in intensive behavior intervention. Finally, current initiatives to extend intervention services to school-aged children are examined.

Organization and Evaluation of a Responsive, Quality-Focused System for the Delivery of Intensive Early Intervention. ERIC V. LARSSON and Kara L. Riedesel (Lovaas Institute Midwest)

Abstract: The need for responsible accountability to consumer and stakeholder interests is paramount in the design of a sustainable intensive early intervention effort. This presentation will report the results of 13 years of effort in designing a comprehensive clinical management system for intensive early intervention. Given the authors’ direct participation in long-term early intervention research over a period of 25 years, the presentation will review the major challenges to treatment integrity and the management and evaluation systems put in place to address these challenges. The critical needs for organizational management and the methods and results of the organizational system across 238 children will be presented. The presentation will summarize the integration of single-subject analyses of the treatment of individual children, with the clinical system, which is designed to ensure the highest rate of best outcomes. The comprehensive clinical management system will be presented as it is designed to assure both consumers and stakeholders that the optimum services are being delivered to each child, and that the organizational capacity is being developed to increase the number of children who are effectively served. The current results will be described as will recommendations for standard accountability procedures for early intervention.

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