Table of Contents
Cover
Praise for Psychological Therapies for Adults with Intellectual Disabilities
Title page
Copyright page
About the Editors
List of Contributors
Foreword
Preface
Chapter 1 Mental Health and Emotional Problems in People with Intellectual Disabilities
Identifying Mental Health and Emotional Disorders in People with Intellectual Disabilities
Therapeutic Disdain
The Evidence for Psychological Therapies for People with Intellectual Disabilities
Making the “Economic Case” for Interventions
Conclusions
Chapter 2 Social and Psychological Factors as Determinants of Emotional and Behavioral Difficulties
Introduction
Upstream Determinants: Socioeconomic Position and Poverty
Upstream Determinants: Disablism
Downstream Determinants: Psychological Factors as Mediating and Moderating Processes
Conclusions
Chapter 3 The Assessment of Mental Health Problems in Adults with Intellectual Disabilities
Introduction
Fundamental Issues in the Identification and Assessment of Mental Health Problems in Adults with Intellectual Disabilities
Mental Health Assessment Tools for Use with Adults with Intellectual Disabilities
Conclusions
Chapter 4 Preparing People with Intellectual Disabilities for Psychological Treatment
Introduction
Client Expectations
The Therapeutic Relationship
Client Factors
Technique Factors: Preparing Therapists
Conclusions
Chapter 5 Adapting Psychological Therapies for People with Intellectual Disabilities I:
Introduction
Assessment of Individuals with Intellectual Disabilities
Adaptations to Compensate for Cognitive Deficits
General Adaptations to Treatment Techniques
Summary
Chapter 6 Adapting Psychological Therapies for People with Intellectual Disabilities II:
Introduction
Conclusions
Chapter 7 Cognitive–Behavioral Therapy for Anxiety Disorders
Introduction
Cognitive–Behavioral Therapy for Anxiety Disorders in the General Population
Meta-Analyses of CBT Studies for Anxiety Disorders in General Populations
Assessment of Anxiety and Emotion
Cognitive Processes and Anxiety Disorders
CBT for People with IDs and Anxiety Disorders
Case Study: Walter
CBT Anxiety Interventions for People IDs
Conclusions
Chapter 8 Cognitive–Behavioral Therapy for Mood Disorders
Introduction
Review of CBT and Mood Disorders
Training and Modification of CBT for Individuals with IDs and Mood Disorders
Empirical Support for Modified CBT
Case Example
Conclusions
Chapter 9 Anger Control Problems
Introduction
Assessment of Anger
Treatment of Anger Control Problems
A Model CBT Anger Treatment for People with Intellectual Disabilities
Conclusions
Chapter 10 Cognitive–Behavioral Therapy for People with Intellectual Disabilities and Psychosis
Introduction
Standardized Assessments of Psychosis in People with IDs
Psychological Therapies for Psychosis in the Nonintellectual Disability Population
Psychological Interventions for Psychosis with People Who Have IDs
Case Study: Joan
Conclusions
Chapter 11 Cognitive–Behavioral Treatment for Inappropriate Sexual Behavior in Men with Intellectual Disabilities
Introduction
Types of Sexual Offending and Inappropriate Sexual Behavior
The Development of Treatment Procedures
The Development of Behavioral Methods
The Development of Cognitive Treatments
Outcomes for Treatment of Sex Offenders with IDs
Conclusions
Chapter 12 Developing Psychotherapeutic Interventions for People with Autism Spectrum Disorders
Introduction
Definition of ASDs
The Cognitive Basis of ASD
Psychological and Emotional Distress in ASD
Psychotherapeutic Interventions for People with ASD
Conclusions
Chapter 13 Supporting Care Staff Using Mindfulness- and Acceptance-Based Approaches
A Key Challenge Facing Care Staff
Theoretical Perspectives on Care Staff Stress
Implications for Intervention
Mindfulness- and Acceptance-Based Intervention with Care Staff
Promotion of Acceptance in Carers and Teachers
Processes within PACT
Conclusions
Chapter 14 Behavioral Approaches to Working with Mental Health Problems
Introduction
The Nature of Behaviorism
Questioning the Evidence for the Efficacy of CBT
Understanding the Development of Mental Health Problems
Implications for Clinical Practice
Chapter 15 Psychodynamic Psychotherapy and People with Intellectual Disabilities
Introduction
Distinctive Features of the Psychodynamic Technique
Developing a Formulation
The Formulation
The Treatment Process
The Evidence Base
Conclusions
Chapter 16 Mindfulness-Based Approaches
Introduction
Mindfulness Approaches in Cognitive–Behavioral Therapy
Mindfulness
Assessment Methods
Mindfulness in ID
Strategies for Teaching Mindfulness to Individuals with ID
Translating Research into Practice
Conclusions
Chapter 17 Psychological Therapies for Adults with Intellectual Disabilities:
Psychological Therapies in the Intellectual Disability Field: “The Translational Continuum”
Special Case versus Mainstream Models, Interventions, and Evidence
Conclusions
Index
Praise for Psychological Therapies for Adults with Intellectual Disabilities
“This book is edited by four professors who are the leading clinical researchers in the field of intellectual disabilities. Their collective expertise and experience are extremely impressive. This book will undoubtedly make an important contribution to the understanding and treatment of the range of difficulties encountered in this population.”
Roz Shafran, Professor of Psychology and Clinical Language Sciences, Reading University
“The editors have brought together an impressive, international group of contributors to present psychological therapies for people with intellectual disabilities. The volume is rich in clinical examples which are extremely valuable in illustrating the therapeutic techniques in action. The chapters on preparing people with intellectual disability for psychological treatment and adapting therapies for persons with intellectual disabilities will be useful for therapists from all theoretical orientations.”
Betsey Benson, Ph.D., Associate Professor of Clinical Psychiatry and Psychology, Nisonger Center UCEDD, Ohio State University
“Without doubt, Psychological Therapies for Adults with Intellectual Disabilities is the best book available at present on this topic. Its chapters span different theoretical frameworks, with an emphasis on cognitive behaviour therapy for a range of emotional and behavioural problems often encountered in people with intellectual disabilities. It provides guidance on many practical issues that come with adapting psychological therapies to people with intellectual disabilities. The editors and contributors are all leading experts in their field, which has resulted in a book that should be standard for practitioners, researchers and students working with people with intellectual disabilities and mental health problems.”
Prof. Dr. Robert Didden, Radboud University Nijmegen, The Netherlands
“The book gives a thorough account of the current state of science in psychological therapies for people with learning disabilities and outlines a plausible way forward for clinicians and researchers to develop a stronger evidence base for such interventions. The chapters on lesser known interventions, e.g. mindfulness were very useful and informative. The authors are all well-known experts and have presented the material persuasively and with clarity.”
Angela Hassiotis, Reader in Psychiatry of Intellectual Disabilities, Mental Health Sciences Unit, Faculty of Brain Sciences, University College London
This edition first published 2013
© 2013 John Wiley & Sons, Ltd.
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Library of Congress Cataloging-in-Publication Data
Psychological therapies for adults with intellectual disabilities / Edited by John L. Taylor, William R. Lindsay, Richard P. Hastings, Chris Hatton.
pages cm
Includes bibliographical references and index.
ISBN 978-0-470-68346-0 (hbk.) – ISBN 978-0-470-68345-3 (pbk.) 1. People with mental disabilities–Psychology. 2. People with mental disabilities–Counseling of.
RC451.4.M47P777 2013
362.2–dc23
2012031380
A catalogue record for this book is available from the British Library.
Cover image: Wooden posts in sea at high tide. Image © James Ross / Getty.
Cover design by www.cyandesign.co.uk
About the Editors
John L. Taylor (john2.taylor@northumbria.ac.uk)
Professor of Clinical Psychology, Consultant Clinical Psychologist and Psychological Services Professional Lead
Northumbria University and Northumberland, Tyne & Wear NHS Foundation Trust, UK
John Taylor qualified as a clinical psychologist from Edinburgh University and has worked mainly in intellectual disability and forensic services in a range of settings in the United Kingdom (community learning disability services, and high, medium, and low secure services). Dr. Taylor has authored or coauthored over 90 publications related to his clinical research interests in the assessment and treatment of mental health and emotional problems and offending behavior associated with intellectual disabilities in a range of research journals, professional publications, and books. He is a Past President of the British Association of Behavioural & Cognitive Psychotherapies (BABCP). Previously, Dr. Taylor was Chair of the BPS Faculty for Forensic Clinical Psychology, the BPS Mental Health Working Group, and the Department of Health National Forensic Mental Health R&D Programme – Learning Disability Steering Group. Currently, he chairs the BPS Approved Clinicians Peer Review Panel.
William R. Lindsay (billlindsay@castlebeck.com)
Consultant Clinical Forensic Psychologist, Professor of Learning Disabilities and Forensic Psychology, Honorary Professor
Castlebeck; University of Abertay, Dundee; and Bangor University, UK
Bill Lindsay is Consultant Psychologist and Clinical Director in Scotland for Castlebeck. He was previously Head of Psychology (LD) in NHS Tayside and a Consultant Psychologist in the State Hospital. He is Professor of Learning Disabilities and Forensic Psychology at the University of Abertay, Dundee; Honorary Professor at Bangor University; and Honorary Professor at Deakin University, Melbourne. Dr. Lindsay has published over 300 research articles and book chapters, and given many presentations and workshops on cognitive therapy and the assessment and treatment of offenders with intellectual disability.
Richard P. Hastings (r.hastings@bangor.ac.uk)
Professor of Psychology
Bangor University, UK
Richard Hastings is Professor of Psychology at Bangor University in Wales where he is the research director of the clinical psychology training program and codirector of the masters training program in Applied Behaviour Analysis. Dr. Hastings engages in research and teaching primarily in the field of intellectual and developmental disabilities. He has authored or coauthored more than 150 journal papers, chapters, and other publications, and currently holds grants with a value in excess of £4 million. He is currently an associate editor/editorial board member for 13 research journals. Dr. Hastings’ research interests focus on mental health in intellectual disability, challenging behavior, caregivers’ adaptation and distress, and psychoeducational intervention for children with autism.
Chris Hatton (chris.hatton@lancaster.ac.uk)
Professor of Psychology, Health and Social Care
Lancaster University, UK
Chris Hatton is Professor of Psychology, Health and Social Care at the Centre for Disability Research, Lancaster University, UK, where he has worked since 2000. Before that, he was a researcher at the Hester Adrian Research Centre, University of Manchester, UK. He has also been Research Director of the Lancaster University Doctoral Programme in Clinical Psychology, and is a cofounder of the Public Health Observatory concerning people with intellectual disabilities. Over the past 20 years, Dr. Hatton has had a consistent research interest in the mental health and well-being of people with intellectual disabilities and their families, including work on understanding the social determinants of inequalities in mental health and well-being, and evaluating assessment tools, psychosocial interventions, and broader innovations in social policy designed to improve mental health and well-being. He has been an author on over 100 peer-reviewed journal articles and over 20 book chapters, and has jointly edited or authored 10 books.
List of Contributors
Alastair L. Barrowcliff
Consultant Clinical Psychologist and Clinical Lead (Learning Disabilities)
Five Boroughs Partnership NHS Foundation Trust, UK
Nigel Beail
Professor of Psychology, Consultant Clinical Psychologist and Professional Head of Psychological Services
University of Sheffield and South West Yorkshire Partnership NHS Foundation Trust and Barnsley Metropolitan Borough Council, UK
Dave Dagnan
Honorary Professor and Clinical Director
Lancaster University and Cumbria Partnership NHS Trust, UK
Alan Dowey
Consultant Clinical Psychologist, Deputy Head of Adult Learning Disabilities
Betsi Cadwaladr University Health Board and Bangor University, UK
Eric Emerson
Professor of Disability & Health Research and Professor of Disability Population Health
Lancaster University, UK and University of Sydney, Australia
Anna J. Esbensen
Assistant Professor of Pediatrics
Cincinnati Children’s Hospital Medical Center, Cincinnati, Ohio, USA
Gillian Haddock
Professor of Clinical Psychology and Head of Division of Clinical Psychology
University of Manchester, UK
Dougal Julian Hare
Senior Lecturer in Clinical Psychology
University of Manchester, UK
Sigan L. Hartley
Assistant Professor
University of Wisconsin-Madison, Wisconsin, USA
Tom Jackson
Consultant Clinical Psychologist
South West Yorkshire Partnership NHS Foundation Trust and Barnsley Metropolitan Borough Council, UK
Andrew J. Jahoda
Professor of Learning Disabilities and Honorary Consultant Clinical Psychologist
University of Glasgow and NHS Greater Glasgow and Clyde, UK
Robert S.P. Jones
Academic Director and Honorary Professor, North Wales Clinical Psychology Programme and Head of Learning Disability (Clinical Psychology)
Bangor University and Betsi Cadwalader University Health Board, UK
Amy Kilbane
Clinical Psychologist
University of Glasgow and NHS Greater Glasgow and Clyde, UK
Martin Knapp
Professor of Social Policy and Director, LSE Health and Personal Social Services Research Unit (PSSRU)
London School of Economics, UK
Giulio E. Lancioni
Professor, Department of Neuroscience and Sense Organs
University of Bari, Italy
Stephen J. Noone
Consultant Clinical Psychologist
Northumberland, Tyne & Wear NHS Foundation Trust, UK
Raymond W. Novaco
Professor of Psychology and Social Behavior
University of California, Irvine, California, USA
Stephen C. Oathamshaw
Consultant Clinical Psychologist and Head of Specialty
Scottish Borders Learning Disability Service, NHS Borders, UK
Angela D.A. Singh
Chief Executive Officer
American Health and Wellness Institute, Long Beach, California, USA
Ashvind N.A. Singh
Chief Clinical Officer
American Health and Wellness Institute, Long Beach, California, USA
Judy Singh
Chief Program Evaluation Officer
American Health and Wellness Institute, Raleigh, North Carolina, USA
Nirbhay N. Singh
Chief Learning and Development Officer
American Health and Wellness Institute, Raleigh, North Carolina, USA
Peter Sturmey
Professor of Psychology
Queens College and The Graduate Center, City University of New York, USA
Paul Willner
Emeritus Professor of Psychology
Swansea University, UK
Alan S.W. Winton
Senior Lecturer
School of Psychology
Massey University, Palmerston North, New Zealand
Foreword
I first became involved in working with persons with intellectual and developmental disabilities while in graduate school (many years ago!). It was not a burning desire to work in this field nor was it even an interest area at the time. I was simply a starving graduate student and I was offered a position as coordinator of a deinstitutionalization project based at the university. By way of context, I had grown up in a small town in upstate New York (USA) where the major employer was a large state institution for persons with intellectual and developmental disabilities. The institution was at the edge of town and fairly isolated from the rest of the community. Integration with the community and interaction with the town’s residents was minimal at best. As a result, many of my peers (and myself included) grew up with very stereotypic, biased, and inaccurate attitudes toward persons with disabilities.
My involvement in the deinstitutionalization project ended up having profound impact on my career. My role in the project was mulifaceted. I was involved in direct care, supervision of staff, cooking (scary!), transportation, overnights, and community integration activities. Many days I would work with the project participants from early morning to bedtime. I very soon realized that my prior attitudes and expectations about persons with intellectual and developmental disabilities were terribly off base. I became particularly interested in the array of social–emotional issues of persons with disabilities. The term “dual diagnosis” had not become part of our vernacular at that time, but I realized that was my interest. At that point, I had also completed several courses in counseling and psychotherapy. It struck me as odd that none of these courses included any content on counseling persons with intellectual disabilities. If mentioned, the guidance in those courses was that counseling and psychotherapy was not appropriate for persons with intellectual disabilities. Clearly, we have come a long way, and Psychological Therapies for Adults with Intellectual Disabilities is a strong evidence of this.
More recently, I spent several weeks in Fall 2011 at the University of Glasgow and was hosted by Dr. Andrew J. Jahoda (thank you again, Andrew) of their Centre for Excellence in Development Disabilities and Department of Mental Health and Wellbeing. Dr. Jahoda is coauthor of several chapters in this book. I also had the opportunity to spend a day with Dr. John L. Taylor. The overall goal of my trip was to get a better understanding of the intellectual and developmental disability services in the National Health Service, particularly in the dual diagnosis area. I was very impressed with the service delivery in the United Kingdom. During my visit with Dr. Taylor, he told me about this forthcoming book and asked if I would consider writing a foreword for the book. I was extremely honored, and after having read the manuscript, I was very pleased to have a small association with this outstanding book.
This book will be an invaluable resource both to professionals who work with persons with intellectual and developmental disabilities as well as more general mental health professionals. In fact, I believe this book will go a long way in encouraging general mental health professionals to offer a fuller and broader array of psychotherapeutic interventions for adults with disabilities. This book emphasizes “think broadly and creatively” in planning services for adults with disabilities.
The first chapters in the book deal primarily with the context of mental health issues with persons with intellectual disabilities – these chapters alone provide an excellent overview of issues in the dual diagnosis area, again providing a broad perspective. The next set of chapters describes various approaches and strategies for preparing clients for psychotherapy and how to make developmental adaptations in therapeutic techniques (e.g., how to encourage expression, monitor thoughts, and use appropriate language). These chapters provide an outstanding overview of various clinical techniques and considerations and cut across theoretical perspectives. Taken alone, these chapters provide a highly useful clinical guidebook.
The remainder of the book focuses on specific theoretical approaches and specific problems areas. These chapters provide an excellent balance of practice issues and review of research. The major theoretical approaches are addressed (cognitive–behavioral, mindfulness, behavioral, psychodynamic) as well as primary presenting problem areas (anxiety disorders, mood disorders, autism spectrum disorders, psychosis, psychosexual problems). The chapters parallel many books on providing therapeutic services for the general population, and the references cited in these chapters are an incredible resource.
For years, I have been an unabashed supporter and advocate for the provision of psychotherapeutic services for persons with intellectual disabilities. And, I have also been a critical reviewer of the research literature base in this area. Psychological Therapies for Adults with Intellectual Disabilities provides an excellent base for both practitioners and researchers in this area. While the chapter authors are predominantly from the United Kingdom, the resources and literature represent an international perspective. In particular, my North American colleagues will find great value in this book. I have not seen a better summary of both the research and clinical issues than those covered in this book. For those professionals who already work with adults with intellectual disabilities, this book will expand your knowledge base and skill repertoire. For general mental health professionals, you will be better able to intervene with your clients with intellectual disabilities with more confidence and a broader perspective.
In my mostly cluttered and marginally organized office, I reserve one bookshelf for those books that I consult frequently and/or highly value – sort of my own personal “hall of fame” for books. Psychological Therapies for Adults with Intellectual Disabilities has a space reserved on that shelf!!!
H. Thompson Prout, PhD
Professor, University of Kentucky
Lexington, Kentucky, USA
July 2012
Preface
It has been estimated that one in six people suffer from mental health problems such as anxiety and depression at any one time. The UK government has stated that this is the single largest cause of disability and illness in England accounting for nearly 40 percent of people receiving incapacity benefits. The effects of these conditions on individuals, their families and carers can be chronic and devastating. Economists have estimated the total cost to the economy of anxiety and depression in terms of lost productivity, sick and other benefits to add up to billions of pounds and equates to one per cent of the national income.
Only one in four of those whose condition is recognised receive effective treatment. Although medication can be a successful treatment for many people, many others would prefer alternative forms of treatment. Psychological therapies have proved to be as effective as drugs in tackling many mental health problems and are often more effective in the longer term. The National Institute for Health and Clinical Excellence (NICE), an independent government advisory body in the UK, has recommended psychological therapies as effective and long-lasting treatments for a wide range of mental health conditions in its clinical guidelines. Subsequently the National Health Service in England has invested heavily in improving access to these interventions through funding new services, training courses and thousands of specially trained therapists.
The situation for people with intellectual disabilities who experience mental health and emotional problems is arguably far worse. People with intellectual disabilities are more likely than others to experience living circumstances and life events that are known to be associated with increased risks for mental health problems. Although mental health and emotional problems are common amongst people with intellectual disabilities, they often go undetected and thus untreated. Despite policy and legislative developments designed to enable people with intellectual disabilities to access mainstream mental health services and effective treatments, there is no evidence that this group is in fact reaping any of the benefits of the large scale investment in improved psychological therapy services.
The reasons – historical, cultural, attitudinal, economic – that people with intellectual disabilities are disadvantaged and excluded in this way are complex and varied. It is the case though that the evidence for the effectiveness of psychological therapies has been slow to develop and hard to come by for clinicians working in routine service settings. This is especially difficult for mental health practitioners who may see people with intellectual disabilities and mental health problems only occasionally or in small numbers.
This volume is aimed at such colleagues and others working in mental health and primary care fields. It sets out the social, policy and economic context, the evidence base, and examples of good clinical practice to assist clinicians and practitioners in providing effective psychological therapies to people with intellectual disabilities who experience mental health problems. Psychological therapies including cognitive, behavioural, psychodynamic and mindfulness-based interventions for a range of mental health and emotional problems including anxiety, depression, anger and psychotic disorders are covered. There are also chapters on working with carers and with clients with autistic spectrum disorders. In addition to guiding good practice in treating these problems and client groups, issues including assessment, adaptation of therapy techniques, and preparing patients for therapy are addressed.
We hope that in bringing this up-to-date material together in a single volume clinicians will be better able to provide effective psychological therapies to adults with intellectual disabilities. It should also be a useful resource to students and therapists in training in the use of psychological therapies and thus over time help to reduce the inequality in access to effective treatments for this client group.
Finally, we would like to thank our colleagues Andy Peart and Kathy Syplywczak at Wiley-Blackwell for their encouragement and help at the beginning and end stages of this project respectively. Particular thanks go to Karen Shield, Senior Project Editor (Psychology) for her forbearance and encouragement during the substantive writing stage this venture.
John L. Taylor, William R. Lindsay, Richard P. Hastings & Chris Hatton
September 2012
Chapter 1
Mental Health and Emotional Problems in People with Intellectual Disabilities
John L. Taylor
Martin Knapp
Historically, there has been a general lack of regard for the mental health needs of people with intellectual disabilities (e.g., Stenfert Kroese, 1998). This is despite clear evidence that people in this population have higher levels of unmet needs and receive less effective treatment for their mental health and emotional problems, and despite the promotion of government policies and the introduction of antidiscrimination legislation designed to break down these barriers. For example, in England, the National Service Framework for Mental Health (Department of Health, 1999) applied to all working age adults and aimed at improving quality and tackling variations in access to care. Its successors, New Horizons: A Shared Vision for Mental Health (HM Government, 2009) and No Health without Mental Health (HM Government and Department of Health, 2011), prioritized better access to psychological therapies (especially cognitive therapy) for socially excluded groups and improved outcomes in mental health by promoting equality and reducing inequalities. The report on Services for People with Learning Disabilities and Challenging Behaviour or Mental Health Needs (Department of Health, 2007) recommended that “[mental health] services available to the whole community increase their ability to meet the needs of people with learning disabilities whose behaviour presents challenges and who have a diagnosed mental illness” (p. 17). In terms of primary legislation, people with intellectual disabilities who experience mental health problems should be able to access services and receive the same treatment as others with reasonable modifications being made in accordance with relevant legislation (e.g., the Disability Discrimination Act 1995, incorporated into the Equality Act 2010).
Despite this raft of policy and legislation, there are a number of reasons for the continuing inequality of access to mental health services and effective treatment for people with intellectual disabilities. These include (a) a lack of knowledge and awareness of mental health and emotional problems experienced by people with intellectual disabilities; (b) some reluctance on the part of therapists to provide these interventions to people in this population; (c) a lack of good quality evidence to guide practice with this client group; and (d) the difficulty of making an economic case in an increasingly challenging fiscal context. These and related issues are explored further in the following sections.
Identifying Mental Health and Emotional Disorders in People with Intellectual Disabilities
As a group, people with intellectual disabilities are more likely than people in the general population to experience living circumstances and life events associated with an increased risk of mental health problems, including birth trauma, stressful family circumstances, unemployment, debt, stigmatization, lack of self-determination, and lack of meaningful friendships and intimate relationships (Martorell et al., 2009). People with intellectual disabilities report experiencing stigma and negative beliefs about themselves and their social attractiveness (MacMahon & Jahoda, 2008), and the stigma and discrimination so often associated with mental health problems add to these challenges (Thornicroft, 2006). In addition, people in this population are likely to have fewer psychological resources available to cope effectively with stressful events, as well as poorer cognitive abilities including memory, problem-solving, and planning skills (van den Hout et al., 2000).
Prevalence
Despite these apparent disadvantages, it is not clear whether people with intellectual disabilities experience more mental health and emotional problems than those without disabilities. Studies of mental health problems among samples of people in this population report large variations in prevalence depending on the methodology used, such as the use of case note reviews versus clinical evaluation, the nature and type of diagnostic assessment used, the location of the study sample (e.g., inpatient vs. generic community services), and, importantly, the inclusion of challenging behavior as a mental health problem or not (see Kerker et al., 2004 for a brief review).
Studies of populations of people with intellectual disabilities using screening instruments to identify potential cases report rates of mental health problems (excluding challenging behavior) of between 20 percent and 39 percent and studies involving clinical assessment of psychiatric diagnosis in people with intellectual disabilities have reported point prevalence rates of between 17 percent and 22 percent when behavior problems are excluded (see Table 1.1). These figures are quite similar to the rates between 16 percent and 25 percent for mental health problems found in the general population (e.g., McManus et al., 2009; Singleton et al., 2001). Although the overall rates of mental health problems (excluding behavior problems) among people with intellectual disabilities appear to be broadly consistent with those found in the general population, the profiles for types of disorders differ. In particular, the rates for psychosis and affective disorders are somewhat higher among people with intellectual disabilities, while those for personality, alcohol/substance use, and sleep disorders are considerably lower (Cooper et al., 2007; Singleton et al., 2001). Hatton and Taylor (2010) present a more detailed discussion of the prevalence of specific types of mental health and emotional disorders (anxiety, depression, psychosis, dementia, substance misuse, and anger) among people with intellectual disabilities.
Table 1.1 Selected Studies of the Prevalence of Mental Health Problems Experienced by Adults with Intellectual Disabilities Using (a) Screening Instruments and (b) Clinical Assessments
(a) Studies using screening instruments |
Taylor et al. (2004) |
1155 |
20 |
Deb et al. (2001) |
90 |
22 |
Roy et al. (1997) |
127 |
33 |
Reiss (1990) |
205 |
39 |
Iverson and Fox (1989) |
165 |
36 |
(b) Studies involving clinical assessmentsa |
Cooper et al. (2007) |
1023 |
18 |
Cooper and Bailey (2001) |
207 |
22 |
Lund (1985) |
302 |
17 |
Corbett (1979) |
402 |
21 |
Diagnostic Overshadowing
Although case recognition is a crucial step in meeting the mental health needs of people with intellectual disabilities, many of these needs are not detected and so remain untreated. There can be several reasons for this.
Reiss et al. (1982) used the term “diagnostic overshadowing” to describe the phenomenon in which carers and professionals misattribute signs of mental health problems, such as social withdrawal as a result of feelings of depression, to an aspect of a person’s intellectual disability, for example, poor social skills. Although it is likely that causes and maintaining factors overlap, the relationship between mental health problems and challenging behavior in people with intellectual disabilities remains unclear (Emerson et al., 1999) and requires further elucidation. Taylor (2010) reported that correlations between scores on a challenging behavior schedule and the three subscales of the Psychiatric Assessment Schedule for Adults with Developmental Disability (PAS-ADD) Checklist mental health screening tool (Moss et al., 1998) were statistically significant (all p < 0.001), but relatively small in magnitude (0.32 affective disorder, 0.31 organic disorder, and 0.28 psychotic disorder) for 740 adults with intellectual disabilities. These data are consistent with the suggestion that while challenging behaviors and mental disorders experienced by people in this population are associated, they are distinct problems.
The issue of diagnostic overshadowing can be exacerbated by the values base and ethos of the training of many staff working in intellectual disability services. Staff in these services tend to use a conceptual framework built around challenging behavior rather than one focused on mental health to understand problematic behavior. Consequently, they may be antithetic to viewing a person’s behavior as indicative of a mental health problem rather than a form of challenging behavior (Costello, 2004). Furthermore, services for people with intellectual disabilities and those for people with mental health problems are often organizationally and functionally separate and have distinct cultures that can lead to gaps in the provision of diagnostic and treatment services (Hassiotis et al., 2000).
Assessment of Mental Health Problems
An additional obstacle to the identification of mental health and emotional problems experienced by people with intellectual disabilities is clinical assessment. The assessment measures available to detect mental health problems among people in this client group are not well developed and often lack reliability and validity. Although in its early stages, work is under way to develop measures for a range of purposes and conditions (e.g., screening and detailed diagnostic assessments for multiple mental health problems, anxiety, depression, psychosis, and trauma) using adapted and de novo measures that can be self or informant. The issues concerning the assessment of mental health problems in adults with intellectual disabilities and a description of a range of tools available to assess these problems are set out in more detail in Chapter 3 of this book.
Therapeutic Disdain
Therapist Attitudes and Beliefs
In the past, many therapists have been reluctant to offer individual psychotherapy, including cognitive–behavioral therapy (CBT), to clients with intellectual disabilities. Offering these treatment approaches requires the development of close working relationships with clients who may be thought to be unattractive because of their disabilities, which make the therapeutic endeavor more challenging and the achievement of quick treatment gains more difficult. Bender (1993) used the term “the unoffered chair” to describe this “therapeutic disdain” (p. 7). In addition, therapists may have assumed that people with intellectual disabilities do not have the cognitive abilities required to understand or benefit from psychological therapy. There is, however, no evidence in the intellectual disabilities field that deficits in particular cognitive abilities result in poorer outcomes, and studies involving children show that it is not necessary to have mature adult cognitive structures to benefit from CBT (Durlak et al., 1991).
A further reason for therapists and services routinely failing to offer psychological therapy to people with intellectual disabilities is the lack of research evidence to support its use with these clients. The lack of good quality research is in part due to difficulties in obtaining funding for research in this area from established grant-giving bodies. Another issue is research ethics committees’ reticence about approving research studies involving participants with intellectual disabilities due to concerns about their capacity to give valid consent to take part in clinical research. Although some people with intellectual disabilities may not be able to comprehend all of the information required to participate in research (Arscott et al., 1998), there is evidence that research participants of average intellectual ability do not fully comprehend key aspects of treatment studies they have consented to take part in either (Featherstone & Donovan, 2002). Thus, we risk discriminatory practices in excluding people with intellectual disabilities from potentially beneficial or benign treatment outcome research based on erroneous assumptions about their capacity to consent compared with the general population.
Cognitive Impairments
Over the last 30 years, psychological therapies, especially CBT, have become established in the treatment of common mental health problems and some severe mental health problems such as psychosis. More recently, this development has been underpinned by the inclusion of CBT for a range of mental health conditions in the National Institute for Health and Clinical Excellence (NICE) guidance. NICE is an independent organization in England that provides advice to the government on the evidence supporting interventions for the promotion of good health and the prevention and treatment of ill-health (www.nice.org.uk). Historically, it has been assumed that people with intellectual disabilities have cognitive impairments that hinder their ability to engage successfully in and benefit from CBT and other evidence-based psychotherapies.
Despite the concern that people with intellectual disabilities may have difficulties in coping with the complexity of interventions aimed at modifying cognitive distortions, experimental evidence shows that people with mild intellectual disabilities can recognize emotions (Joyce et al., 2006; Oathamshaw & Haddock, 2006; Sams et al., 2006); label emotions (Joyce et al., 2006); discriminate thoughts, feelings, and behaviors (Sams et al., 2006); and link events and emotions (Dagnan et al., 2000; Joyce et al., 2006; Oathamshaw & Haddock, 2006). However, there is some research showing that the majority of these participants with intellectual disabilities were unable to do an experimental task involving understanding of the mediating role of cognitions, particularly when the complexity of the task was increased (Dagnan et al., 2000; Joyce et al., 2006; Oathamshaw & Haddock, 2006). However, it is not clear whether this phenomenon is simply a function of the complexity of the experimental tasks presented to study participants or if it would be observed in routine treatment settings.
Changes in Professional Attitudes
There are encouraging signs that provision of evidence-based psychological therapies, and CBT in particular, to people with intellectual disabilities is increasing. Nagel and Leiper (1999) found that approximately one-third of British psychologists who responded to a survey on the use of psychotherapy with people with intellectual disabilities reported using these approaches frequently. An edited book on CBT for people with intellectual disabilities (Stenfert Kroese et al., 1997) and a special issue of the Journal of Applied Research in Intellectual Disabilities devoted to CBT (Willner & Hatton, 2006) point to increasing interest in the use of these therapeutic approaches with these clients. A special issue of Behavioural and Cognitive Psychotherapy – the official scientific journal of the British Association for Behavioural and Cognitive Psychotherapies (BABCP) – concerning contemporary developments in the theory and practice of CBT included a paper on applications for people with intellectual disabilities (Taylor et al., 2008).
There is also emerging evidence that practitioners in the field are beginning to offer CBT interventions aimed at identifying and modifying cognitive distortions rather than relying on techniques that focus on ameliorating cognitive skills deficits. For example, Lindsay (1999) reported on successful outcomes of CBT interventions for people referred for a range of clinical problems including anxiety, depression, and anger that explicitly incorporated work on the content of cognitions underpinning and maintaining their emotional difficulties. Willner (2004) and Stenfert Kroese and Thomas (2006) used imagery rehearsal therapy, a technique that deals with dream imagery in the same way as cognitive distortions, to successfully treat a man and two women, respectively, who were experiencing postabuse traumatic nightmares. Haddock et al. (2004) reported a case series of five people with mild intellectual disabilities and psychosis who showed improvements following a cognitive–behavioral intervention adapted from an established therapy that included a cognitive restructuring component.
The Evidence for Psychological Therapies for People with Intellectual Disabilities
The difficulties in developing an evidence base to support psychological (and other forms of) treatments for people with intellectual disabilities have been discussed previously (e.g., Oliver et al., 2003; Sturmey et al., 2004) and are covered in some depth in Chapter 17 of this book. In the following section, an overview of the evidence for psychological therapies for this client group is provided to frame the detailed discussion of the application of these approaches to particular types of disorders and client groups in succeeding chapters.
Reviews of Reviews of the Evidence
Gustafsson et al. (2009) surveyed systematic reviews that evaluated the effects of psychosocial interventions for adults with intellectual disabilities who experienced mental health problems. They found 55 reviews that concerned the effectiveness of psychotherapy (mainly behavioral and cognitive behavioral interventions) for adults with intellectual disabilities published between 1969 and 2005. Only two reviews met the survey inclusion criteria. The results of these reviews showed that interventions based on cognitive–behavioral approaches appear to reduce aggression at the end of treatment, although the reviews included studies judged to be of low quality.
In a narrative review of reviews that focused more specifically on psychotherapy for people with intellectual disabilities, Prout and Browning (2011a) described the conclusions of seven reviews published between 2000 and 2011. Prout and Browning found that research on psychotherapy with this client group continues to lack a critical mass of studies with robust designs (particularly randomized controlled trials (RCTs)) required to establish the efficacy of these approaches. This lack of rigor notwithstanding, they concluded that psychotherapy is “at least moderately beneficial” for people with intellectual disabilities and a range of mental health problems (p. 57). They suggested that in addition to RCT studies, future research needs to consider the active ingredients of effective treatments, and the adaptations and process variables (e.g., therapeutic alliance) that contribute to successful outcomes.
Reviews and Commentaries
There have been numerous narrative reviews and commentaries that have considered the effectiveness of psychotherapy for people with intellectual disabilities who have mental health and emotional problems. A summary of some of the key themes and conclusions from these reviews is given in the following discussion.
Prout and Nowak-Drabik (2003) reported on perhaps the most comprehensive review of psychotherapy for people with intellectual disabilities. Using a clear definition of psychotherapy, they considered 92 studies published over a 30-year period between 1968 and 1998. The pool of 92 studies was rated systematically by “experts” with regard to outcome and effectiveness. The studies in this pool involved behavioral (33 percent), cognitive–behavioral (13 percent), analytic/dynamic (15 percent), humanistic/person centered (2 percent), and “other” (37 percent) types of psychotherapy. Just 9 of the 92 study reports were found to meet the study criteria and provided sufficient information to be used in a meta-analysis of treatment effectiveness; this yielded a mean effect size of 1.01. Exploratory analyses suggested that published studies involving manual-guided individual treatment and behaviorally orientated therapies (excluding behavior modification) yielded higher outcome and effectiveness ratings. Prout and Nowak-Drabik (2003) concluded from their analysis that psychotherapy for people with intellectual disabilities produces moderate outcomes and benefits for clients. Although many of the studies included in the review lacked methodological rigor, the authors suggested that psychotherapeutic interventions should be more frequently considered in treatment plans for these clients.
Beail (2003) provided a commentary comparing “self-management” approaches, cognitive therapy, and psychodynamic psychotherapy outcome studies in the intellectual disabilities field. Numerous case studies, case series, and a small number of uncontrolled group studies concerning self-management approaches were identified, especially in the forensic intellectual disability field. Only a few attempts at controlled studies were cited – two studies in the area of problem-solving reported mixed results in terms of outcome, and three studies in the anger management field produced significant improvements.
Although the literature pertaining to cognitive–behavioral self-management approaches reviewed by Beail (2003) is quite limited, this contrasts with the evidence available for psychodynamic psychotherapy with this client group. Four pre-post treatment open trials of psychodynamic psychotherapy were included, which were successful in reducing behavioral and offending problems among people with intellectual disabilities. Very little evidence was available to support the use of cognitive therapy as means of targeting distorted cognitions that underpin problem behavior, attitudes, and emotional distress in this population.