Pediatric Intellectual Disabilities at School: Translating Research into Practice

253 Pages·2018·2.616 MB·English

by  Steven R. Shaw, Anna M. Jankowska

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
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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