Improving access to focused psychological interventions for people with intellectual disability

People with disability represent a diverse population. The Convention on the Rights of Persons with Disabilities (The United Nations, 2006) defines persons with disabilities as having long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others. This article focuses on people with intellectual disability (ID) primarily, a developmental disorder affecting about three per cent of the population. The prevalence rates of mental health problems are higher for people with an ID (dual disability) than for the general population, suggesting that they are a particularly vulnerable group.

Much has shifted in our conceptualisation of ID over the decades, from paternalism and protectionism, to social models. Current social models highlight the need to not simply focus on the person in isolation, but to consider the enablers and barriers in their environment, and the opportunities and support they may require to participate in the community.

Current conceptualisations of disability have a number of implications for psychology practice including the need for psychologists to:

• make reasonable adjustments to ensure persons with disability have access to their services
• reflect on their attitudes, reactions, conceptions of disability, and possible biases that may affect their professional relationships with clients who have disabilities
• provide care that enhances wellbeing, social inclusion and allied concepts such as choice, preference and self-determination, and addresses environmental barriers to their realisation.

None of these ideas are new to psychologists, who abide by a code of ethics that stipulates discrimination-free practice, and who are well-versed in person-centred care approaches which have their roots in psychological theory and practice.

Intellectual disability

ID is a condition which shows itself as limitations in the person’s ability to learn about and solve the problems of daily life (intellectual functioning) and to be independent in the activities required for daily living (adaptive functioning). ID occurs along a spectrum and is present in some form in about three per cent of the population. It is often present from a person’s early years of life and is permanent. People with an ID usually have difficulty communicating, remembering things, understanding social rules, understanding cause and effect for everyday events, solving problems, and interacting in ways that are characteristic for their age. A proportion of people with ID (approximately 60%) have severe communication impairment, sometimes referred to as complex communication needs (AIHW, 2008). This is where someone does not use speech to meet their daily communication needs. It means having little or no functional speech or where the person’s speech is very hard to understand and this is not due primarily to a hearing loss. The person may use different communication strategies in conjunction with their speech to make themselves understood (e.g., speech approximations, gestures, facial expression). Other people use one or more types of communication systems (e.g., picture/word boards, electronic devices) as a complete alternative to speech.

ID and mental health

Prevalence rates of mental health problems are generally higher for people with ID than for the general population. Some disorders may be more or less likely and may also present in a different way than in the general population. However, research has demonstrated that people with ID experience the full range of psychological disorders (Lowry, 1998). Prevalence rates have been placed between 10 and 74 per cent, the large variation being a result of the different ways studies have been conducted. In Australia in 2003, 57 per cent of people aged less than 65 years with intellectual disability also had psychiatric disability1. Certain factors are thought to interact to mediate mental health outcomes for this population, including neurological and genetic conditions, sensory impairments, reduced social networks, inappropriate living environments, adverse life events, economic disadvantage, frequent transitions, bereavement and loss, discrimination and abuse (biopsychosocial model).

Mental health assessment of people with ID

The presence of ID poses particular difficulties when it comes to mental illness diagnosis. Assessment of mental illness in those with a mild ID may be similar to the general population however there may be greater reliance on others for information. One reason is that the person with ID is often unable to express symptoms that a clinician looks for when diagnosing a mental illness which makes information about symptoms difficult to elicit. A limited number of tools have been developed to evaluate the presence of a potential psychiatric problem in a person with ID. For example, the Glasgow Depression Scale for people with a Learning Disability (Cuthill, Espie & Cooper, 2003) is designed to be completed by the person with a mild disability. For people who are unable to self-report, the Depression Checklist for Adults with ID (Torr, Iacono, Graham, & Galea, 2008) can be completed by carers. The Psychiatric Assessment Schedules for Adults with Developmental Disabilities2 provide a structured framework for assessment and case recognition.

Carers and others, including clinicians, may attribute all forms of behaviour difficulties to the person’s ID and fail to consider that the behaviour may be a symptom of mental illness. This is referred to as diagnostic overshadowing, and is a major barrier in the accurate diagnosis of mental illness in this population. Adding further complexity, there may be unique symptom presentations in the ID population. For example, depressed mood may manifest as physical aggression, losses of previously mastered skills or decreases in IQ upon testing. When assessing the presence of mental illness in a person with ID, psychologists should investigate whether the person is behaving in ways that are different to their usual behaviour (e.g., changes in self-care, posture and movement), whether these changes are consistent across the majority of settings, and whether the person’s reactions are out of keeping with the situation.

Psychological interventions for people with ID

Despite an established need for counselling and psychotherapy for people with ID3 there have been few empirical studies of the effectiveness of psychotherapy for this group, with case studies providing the main source of evidence. More recent studies have been characterised by stronger designs and methodologies (e.g., RCT studies) and demonstrate that cognitive behaviour therapy (CBT) can be used with this group with some modification and is effective for anger management and reducing levels of depression in adults with mild/moderate ID (for a review of these, see Di Marco and Iacono, 2007).

Examination of the available research reveals an evolution of perspectives on psychological interventions. The early research was driven by a psychodynamic perspective (that often had a focus on curing ID) with later research utilising CBT for people with an ID documenting positive outcomes. Therapies based on mindfulness are emerging as important new developments. On the whole, the evidence base for the effectiveness of psychological therapies is limited. A degree of inference is drawn from the interventions applicable to the general population with mental health problems and clinicians continue to rely on opinion over evidence to support their use (Flynn, 2012).

For a person with ID, his or her cognitive and/or communication characteristics can have a substantial impact on how therapy proceeds. The processes of speech and listening underlie a range of counselling techniques (e.g., paraphrasing, reflecting, questioning, summarising, challenging) – applying this with someone with little or no functional speech, or who has difficulty understanding the nuances of abstract feelings presents obvious challenges.

Examples of issues that influence the effectiveness of counselling for people with ID include:

• The pace of counselling may be slower, or sessions might be briefer to contend with client fatigue, meaning less content can be covered in each session, or shorter more frequent sessions may need to be scheduled.
• Clinicians are restricted in their capacity to ask open-ended questions and there is a greater reliance on closed questions. Especially for client-centred approaches, open-ended questions give clients opportunity to elaborate on a point without being influenced into the clinician’s frame of reference.
• There is greater potential for the therapist to misunderstand or wrongly interpret the client’s messages.
• The person may be less likely to initiate new topics and is more likely to take a passive role in conversations in comparison with people who rely on speech.
• There is reliance on carers as information sources which needs to be balanced with privacy and confidentiality considerations. Carer perspectives are not always equivalent to a person’s own perception of his or her life.

A word on adaptations

It is important to point out that there are more similarities than differences when working psychotherapeutically with clients with ID and those without. The presence of ID requires psychologists to consider the way procedures are applied, but does not change the underlying principle of counselling – that is, supporting self-exploration in order that a client may achieve desired changes in behaviour. A psychologist’s capacity for counselling attitudes and behaviours (e.g., empathy, positive regard and genuineness) similarly remains unchanged.

Psychologists can seek to further understand the appropriate provision of accommodations in order to provide better access to psychological interventions for persons with disabilities. Accommodations are alterations to standard procedures that are made to overcome a person’s functional impairments, in order to increase a person’s access to those procedures. A functional impairment for a person with ID may be expressing needs, understanding information, participating in conversations and integrating information for making positive life changes. Examples of reasonable adaptations include the clinician slowing down their rate of conversation by inserting frequent pauses, working with the person to co-construct messages, using visual aids and providing limited set options.

Psychologists should use their professional judgement in applying any adaptations, with attention to preserving the integrity of the approach from which the procedure is predicated. How adaptations impact on psychotherapeutic processes and outcomes (e.g., the therapist-client relationship within a consultation) has not been addressed in the research literature. Further reading and professional consultation or clinical supervision are important elements to support the practice of psychologists in this area.

A number of considerations for adapting focused psychological interventions for use with people with ID are presented in the boxed content to the right.

The final word

Mental health assessment and treatment for people with ID is an area of some complexity and evidence is decidedly lacking, however there are sufficient inferences that we can make from interventions applicable to the general population with mental health problems and best practice in ID mental health. Effective interventions need to be part of a broader service plan for the person – planning that is directed by the person and his or her care team, and reflects the person’s goals and aspirations.

Multidisciplinary practice is the preferred model, with a range of disciplines contributing to the management of mental health problems and requires willingness for collaboration. There are a range of other practice and ethical issues, for example, informed consent for treatment that must also be navigated when working with some people with ID whose capacity may be impaired or limited. Further research is needed into the effectiveness of adaptations for psychological interventions that target different clinical issues (currently, evidence in relation to adaptations of CBT for people with an ID has demonstrated the effective treatment of anger and depression) as well as how effective such modifications might be for people with more severe levels of ID. Research is also needed to understand which elements are the most effective change agents.

The first author can be contacted at [email protected].