Psychological Therapies for Adults with Intellectual Disabilities

John L. Taylor, William R. Lindsay, Richard P. Hastings, Chris Hatton, John L. Taylor, William R. Lindsay, Richard P. Hastings, Chris Hatton

• Publisher: Wiley-Blackwell
• Year: 2012
• Print ISBN: 9780470683453, 9780470683460
• eBook ISBN: 9781118329191
• Edition: 1
• Topic: Psychology
• Subtopic: Clinical Psychology
• Index: Psychology

Psychological Therapies for Adults with Intellectual Disabilities brings together contributions from leading proponents of psychological therapies for people with intellectual disabilities, which offer key information on the nature and prevalence of psychological and mental health problems, the delivery of treatment approaches, and the effectiveness of treatment.

• Offers a detailed guide to available therapies for adults with intellectual disabilities
• Includes case illustrations to demonstrate therapies in action
• Provides up-to-date coverage of current research in the field
• Puts forward a consideration of the wider contexts for psychological therapy including the relationship with social deprivation, general health, and the cost effectiveness of treatment
• Places individual interventions in the context of the person's immediate social network including families and carers
• Includes contributions from leading proponents from around the world

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

	N	Prevalence (%)
(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 assessments^a
Cooper et al. (2007)	1023	18
Cooper and Bailey (2001)	207	22
Lund (1985)	302	17
Corbett (1979)	402	21

^aRates excluding behavior problems calculated using the data presented by Cooper et al. (2007) in Table 6, p. 33.

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 p...

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
• Chapter 2 Social and Psychological Factors as Determinants of Emotional and Behavioral Difficulties
• Chapter 3 The Assessment of Mental Health Problems in Adults with Intellectual Disabilities
• Chapter 4 Preparing People with Intellectual Disabilities for Psychological Treatment
• Chapter 5 Adapting Psychological Therapies for People with Intellectual Disabilities I:
• Chapter 6 Adapting Psychological Therapies for People with Intellectual Disabilities II:
• Chapter 7 Cognitive–Behavioral Therapy for Anxiety Disorders
• Chapter 8 Cognitive–Behavioral Therapy for Mood Disorders
• Chapter 9 Anger Control Problems
• Chapter 10 Cognitive–Behavioral Therapy for People with Intellectual Disabilities and Psychosis
• Chapter 11 Cognitive–Behavioral Treatment for Inappropriate Sexual Behavior in Men with Intellectual Disabilities
• Chapter 12 Developing Psychotherapeutic Interventions for People with Autism Spectrum Disorders
• Chapter 13 Supporting Care Staff Using Mindfulness- and Acceptance-Based Approaches
• Chapter 14 Behavioral Approaches to Working with Mental Health Problems
• Chapter 15 Psychodynamic Psychotherapy and People with Intellectual Disabilities
• Chapter 16 Mindfulness-Based Approaches
• Chapter 17 Psychological Therapies for Adults with Intellectual Disabilities:
• Index