Pediatric Intellectual Disabilities at School: Translating Research into Practice PDF
Preview Pediatric Intellectual Disabilities at School: Translating Research into Practice
Pediatric School Psychology Series Editor: Paul McCabe Steven R. Shaw Anna M. Jankowska Pediatric Intellectual Disabilities at School Translating Research into Practice Pediatric School Psychology Series Editor: Paul McCabe Brooklyn College School of Education Brooklyn, NY, USA The Pediatric School Psychology series presents evidence-based research and practices for prevention, intervention, and treatment of pediatric health issues in school settings. As school psychologists and other educational professionals apply their skills to promote the social and academic success of all students, the information presented in each book in the series facilitates their efforts to understand various health and mental health disorders and target educational delivery to maximize success. Each volume in the series provides analysis by leading experts, who evaluate, synthesize and summarize key research findings and school-related considerations on a specific pediatric disorder. Volume authors critically assess the quality and scholarly design of the extant literature and provide readers with a comprehensive, in depth review of the topic. The information presented in each volume helps scholars and practitioners make informed decisions about identification, evaluation, and treatment of the pediatric health or mental health issue. The overarching goal of the series is to inform and facilitate efforts to enhance the health, mental health, and educational development of students. More information about this series at http://www.springer.com/series/13561 Steven R. Shaw • Anna M. Jankowska Pediatric Intellectual Disabilities at School Translating Research into Practice Steven R. Shaw Anna M. Jankowska McGill University University of Gdańsk Montreal, QC, Canada Gdańsk, Poland ISSN 2524-8278 ISSN 2524-8286 (electronic) Pediatric School Psychology ISBN 978-3-030-02990-6 ISBN 978-3-030-02992-0 (eBook) https://doi.org/10.1007/978-3-030-02992-0 Library of Congress Control Number: 2018961746 © Springer Nature Switzerland AG 2018 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, express or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland Preface Both authors of this volume have extensive clinical experience providing educa- tional, social, and mental health services to a diverse population of children and their families. Even though our training and clinical experiences took place in dif- ferent parts of the world with differing cultures, systems, beliefs, and languages (Poland and Spain for AMJ, the southern United States, French and English- speaking Canada for SRS), we saw similar challenges of meeting all the needs of children with intellectual developmental disabilities and how quickly professionals were to dismiss these children as having low potential for success. As we moved from careers as clinicians to researchers, we saw three major areas of challenges. Professionals researching developmental disabilities focus much of their atten- tion on autism spectrum disorder (ASD) and minimize research on intellectual developmental disabilities. The frequently heard arguments were that research on ASD is dynamic and exciting whereas research on intellectual development has stagnated and advanced little over the last 20 years. Another frequent refrain is that research in intellectual developmental disabili- ties has advanced in fields of genetics and neuroscience, but there is no change in implementing these ideas or applying advanced research to classrooms or therapy. The third concern is that much work on intellectual developmental disabilities has focused on advocacy, disability rights, and legal reform. As such, advances in scholarship may be specific to a nation, legal system, or culture. An international perspective in improving the details of educational and mental health service deliv- ery to persons with intellectual developmental disabilities is lacking. As we began collaborating and focusing on children with low general mental ability, it became clear that a volume was required that identified the wide breadth and depth of new research focusing on intellectual developmental disabili- ties. Far from being stagnant, the field is dynamic and has provided multiple advances in areas ranging from genetics and neuroscience to family and community supports. We also identified the need for a volume that focuses on how this informa- tion can be directly applied to ideas for implementing research for teachers, thera- pists, policymakers, parents, pediatricians, and other professionals and stakeholders in the lives and development of persons with intellectual developmental disabilities. v vi Preface Finally, we wanted to integrate our international perspectives and review the best and most recent scholarship from around the world and summarize this information in a single volume. This volume addresses several issues for school psychologists, educators, thera- pists, and researchers that require a new book-length treatment on the topic of pro- viding rehabilitative and educational services to children with intellectual developmental disabilities. There are many children in school systems with idio- pathic severe to profound intellectual disabilities or autism who are sometimes con- sidered to be untestable, unteachable, and unknowable. This volume describes and addresses the following issues: • There have been many advances in genetic and medical research with direct implications for children with intellectual disabilities. Yet, most of these findings appear in medical and genetic journals that are not immediately accessible to most school psychologists and educators. Moreover, the application of the find- ings to the provision of advanced educational and mental health services in a school setting is not clear. This book reviews the latest advances in the detection, understanding, and medical treatments for children with intellectual disabilities and transfers this knowledge to an audience of educators and school psycholo- gists in a clear and applied manner. • In addition to advances in genetics and medicine, there have also been major advances made in the psychology, education, and technology for assessment, education, therapies, implementation of innovation, evidence-based interven- tions, and medical management of children with low incidence developmental disabilities. These advances require translation of research to practice. • The role of mental health for children with intellectual developmental disabilities has received more attention and research over the last 5 years than before. Rather than simply considered a behavior management issue, there is significantly new thinking about the understanding of assessment and treatment of emotional and behavioral therapies for people with intellectual disabilities. • There are new classification systems from the American Psychiatric Association, World Health Organization, and the American Association on Intellectual and Developmental Disabilities. These classification systems require integration and application to school settings. Ramifications of these changes for assessment, education, service delivery, and funding are discussed and suggestions made. • In a dynamic area of research, such as intellectual disabilities, there is a host of new research and clinical questions, unresolved research areas, and more unknowns than ever. As an analogy: as the balloon of what is known expands due to new research findings, an ever-greater surface area of the balloon encounters the unknown. New and future research questions and methods to address future questions are discussed. • As in other areas of clinical practice, the answer to providing quality research-to- practice school psychological, educational, and mental health services is via a team approach. Methods of developing and using multidisciplinary, i nterdisciplinary, and transdisciplinary teams for providing improved services to children with intel- lectual developmental disabilities are discussed. Preface vii There is often a false dichotomy set up in books, professional training, educa- tion, and clinical practice. This false dichotomy is the “practical versus research” problem. This false dichotomy results in psychologists and educators chasing unfounded ideas because they are practical and intuitive. Likewise, research is more likely to be developed to test a theoretically relevant hypothesis and ignore potential applications. The move toward evidence-based practice has resulted in meretricious ideas and interventions that are bolstered by carefully cherry-picked supportive sci- entific studies of questionable quality, all the while ignoring studies not supporting the idea or intervention of the moment. The Lewin quote “There is nothing so prac- tical as good theory” has never been more relevant than for children with intellec- tual developmental disabilities. The purpose of this book is to mobilize theory and research in the service of evidence-based practice for this population and combat questionable and even dangerous practices. Only when research and its application inform each other will the quality of education and service delivery advance. The purpose of this book is to integrate the interdisciplinary advances in the frontiers of research on intellectual developmental disabilities into a coherent and easy-to-read volume. We have prioritized the most important new research in medi- cal, sociological, pedagogical, psychological, administrative, legal, biological, and genetic arenas for critical review. The goal is not simply to engage in knowledge transfer. The goal is to identify and describe exactly how teachers and researchers can integrate the wide range of new research and implement these findings into classrooms, therapeutic settings, and policy development arenas. We would like to erase the common, but false dichotomy between research and practice. Therefore, our primary audiences are teachers, psychologists, therapists, physicians, and other providers of services to children with intellectual developmental disabilities. Researchers may also benefit simply because we are providing a review of advances in science and identifying fertile ground for new research and weaknesses in the current research literature. Yet, the primary goal is to assist educators and other professionals to develop the most innovative and evidence-based approaches to pro- viding services to children with intellectual disabilities based on new thinking, basic science, and published action research available. Montreal, QC, Canada Steven R. Shaw Gdańsk, Poland Anna M. Jankowska Acknowledgments We would like to acknowledge several people in the development and completion of this project. The graduate students and members of the Connections Lab at McGill University have been invaluable in providing direct support to this project and pick- ing up the slack on our other research projects as I was away completing this volume. Finally, many thanks to my family for their unfailing patience and support. Special thanks to Isabel for keeping me disciplined and focused. S.R.S. No project can be successful without the strong support of an editorial staff. Paul McCabe, Judy Jones, and Garth Haller have provided invaluable feedback to improve the focus and nature of this volume. Their kindness, rigor, timeliness, and professionalism have made this project an enjoyable one. A.M.J. ix Contents 1 Introduction and Overview . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 People with Intellectual Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Common Characteristics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2 Evolving Science, Evolving Social Perspectives . . . . . . . . . . . . . . . . . . . 3 Defining Developmental Intellectual Disabilities . . . . . . . . . . . . . . . . . . 4 Labelling/Euphemism Treadmill . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5 Sociological Influences . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Definitions in Current Use . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 International Classification of Diseases, 11th Edition . . . . . . . . . . . . . 14 American Association on Intellectual and Developmental Disabilities . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16 Individuals with Disabilities Education Act . . . . . . . . . . . . . . . . . . . . . 17 Social Security Disability Insurance . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Conclusions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 2 Causes and Symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Case Study . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23 Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 24 Genetics . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 26 Advances in Practice . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 32 Advances in Technology, Screening, and Description of Behaviours . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Behavioural Phenotypes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Genetic Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 34 Genetic Screening and Testing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Finding a Cure or Cause . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 Translating Basic Science to Classroom and Therapy . . . . . . . . . . . . . . . 38 Team Membership . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 Medical . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 39 xi
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