By Niki Rae Huitson M.A., Simon Fraser University, 2005 M.P.M., Simon Fraser University, 1998 B.Sc
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Decoding the FASD Enigma: Application of a New Multidisciplinary Policy Paradigm by Niki Rae Huitson M.A., Simon Fraser University, 2005 M.P.M., Simon Fraser University, 1998 B.Sc. (Hons.), Lakehead University, 1994 Dissertation Submitted in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in the School of Criminology Faculty of Arts and Social Sciences Niki Huitson 2014 SIMON FRASER UNIVERSITY Spring 2014 All rights reserved. However, in accordance with the Copyright Act of Canada, this work may be reproduced, without authorization, under the conditions for “Fair Dealing.” Therefore, limited reproduction of this work for the purposes of private study, research, criticism, review and news reporting is likely to be in accordance with the law, particularly if cited appropriately. Approval Name: Niki Rae Huitson Degree: Doctor of Philosophy (Criminology) Title of Thesis: Decoding the FASD Enigma: Application of a New Multidisciplinary Policy Paradigm Examining Committee: Chair: Sheri Fabian, Senior Lecture Firstname Surname Senior Supervisor Raymond Corrado Senior Supervisor Professor Margaret Jackson Supervisor Professor Gail Anderson Supervisor Professor Julian Somers Internal Examiner Associate Professor, Faculty of Health Sciences Tullio Caputo External Examiner Associate Professor, Department of Sociology and Anthropology Carleton University Date Defended/Approved: April 2, 2014 ii Partial Copyright Licence iii Ethics Statement iv Abstract In this dissertation, a comprehensive, integrated, multileveled prevention paradigm is proposed to evaluate and/or reform existing FASD policies. There is a variety of evidentiary sources available to policy makers, but there is increasing pressure to utilize more rigorous approaches to analyze the “complex evidence base”. I consider the need for high quality evidence including research and non-research sources, as well as quantitative and qualitative approaches. Findings from my own research, as appropriate for each level’s focus, are also discussed. I begin with the tertiary prevention level which aims to provide individuals affected by FASD continuous interventions throughout their lives so they will “not commit” and can function in the community. However due to the secondary disabilities associated with FASD, these individuals are often found within the criminal justice system. I present a comparison of individuals diagnosed with FASD found within a serious and violent offender population with those who are not diagnosed. I highlight exemplar legal cases where FASD is considered. In addition, I discuss exemplar initiatives and programs addressing the management of affected individuals. The secondary prevention level focuses on interventions to modify those environmental conditions that increase the possibility of maternal drinking. I present an extensive list of risk factors for FASD. Next I reveal four themes of intervention from the literature: screening tools, research, education, and legal strategies. With those in mind, I examine a high risk population using the existing literature on social determinants. The goal of the primary prevention level is to modify the social and environmental conditions that increase the opportunities which create individuals affected by FASD. At this level, the evidence I bring to bear are data which juxtapose medical facility locations and recorded police contacts with intoxicated persons in the same area. My findings suggest an integrated systems approach would be an effective way to identify, validate, implement, and evaluate current FASD policy and practices. By employing this tri-level prevention paradigm, it is possible to address the complexities of FASD, identify the gaps in knowledge and services, and discuss more promising policy and practical initiatives. Keywords: fetal alcohol spectrum disorder; policy model; integrated systems approach; prevention v Dedication To Josh and Jorja, my biggest distractions and my greatest motivators and To Margaret, who never stopped believing… vi Acknowledgements I would like to thank my committee members, Dr. Ray Corrado and Dr. Gail Anderson for your patience, guidance, and ongoing support. In particular, I would like to express my sincere gratitude to Dr. Margaret Jackson for your unwavering support and encouragement. You have always been an exemplar committee member who always found the time for guidance and inspiration, your belief in me and in my research sustained me through this long and often difficult process. I would also like to thank my external examiners, Dr. Tullio Caputo and Dr. Julian Somers for your insightful comments. In addition, I am grateful for the major theoretical contributions made by Dr. Patricia Brantingham and Dr. Jacqueline Faubert. I am also extremely appreciative for the opportunity to work with ICURS (Institution for Canadian Urban Research Studies), who provided the data for this dissertation. I also want to thank Mocssy (Modelling of Complex Social Systems program) for partially funding this research; Katie Wuschke for GIS and data retrieval expertise; Evan McCuish, Project Director of the Vancouver Longitudinal Study of Incarcerated Young Offenders, for data retrieval expertise; Dr. Bryan Kinney and Dr. Richard Frank for computer technical expertise, Dr. Chris Giles for statistical consultation, Patrick Neal and Nelly Ustyushenko for assisting with literature reviews; and Dr. Sheri Fabian and Rebecca Carleton for formatting this dissertation and substantially improving the appearance of the final product. Finally, I am grateful to my family and friends, who have travelled this academic journey with me for decades, for without you this endeavour would not be possible. vii Table of Contents Approval .......................................................................................................................... ii Partial Copyright Licence ............................................................................................... iii Ethics Statement ............................................................................................................ iv Abstract ........................................................................................................................... v Dedication ...................................................................................................................... vi Acknowledgements ....................................................................................................... vii Table of Contents .......................................................................................................... viii List of Tables .................................................................................................................. xi List of Figures................................................................................................................ xiii List of Acronyms ............................................................................................................xiv Chapter 1. Introduction: Background to the FASD Policy/Prevention Analysis .................................................................................................. 1 Policy Overview ............................................................................................................... 4 What is Policy? ................................................................................................................ 4 Policy Evolution ............................................................................................................... 5 Implementation of FASD Policy ....................................................................................... 5 Is FASD a “Wicked Problem”? ......................................................................................... 6 What is Good Policy? ...................................................................................................... 8 Types and Quality of Research Producing Evidence ....................................................... 8 The Use of Evidence ..................................................................................................... 10 Finding Evidence ........................................................................................................... 11 Chapter Organization .................................................................................................... 20 Chapter 2. Introduction to FASD ........................................................................... 22 Understanding Teratogenic Effects of Alcohol – Historical Overview ............................. 22 Historical Review ........................................................................................................... 22 1970s to Present ........................................................................................................... 24 FASD Definitions and Characteristics ............................................................................ 25 FASD Developmental and Behavioural Abnormalities ................................................... 28 Criteria and Diagnosis for FASD.................................................................................... 38 FASD Diagnostic Issues ................................................................................................ 39 Unreliability and Inconsistencies.................................................................................... 40 Development of Objective Measures ............................................................................