The planning and provision of psychiatric services for adults with intellectual disability
Nick Bouras
Geraldine Holt
Introduction
The functioning of people with intellectual disability (ID) is affected by many factors. As well as their ID, their ability to communicate with others, their social competency, personality, life experiences and circumstances, and their health (including mental health) also influence their behaviour and adjustment.
This chapter focuses on the development and provision of services for adults with ID who have additional psychiatric and behavioural disorders. Developments have taken place in various parts of the world in recent years and a wide range of services has emerged.
History and concepts
In the mid-nineteenth century the conceptualizations of the needs of people with ID and of those with mental illness, and of how to meet these needs were separated. Intellectual disability was not then included in psychiatric training curricula and generations of psychiatrists did not see people with ID, apart from those involved with administrative functions or the prescription of psychotropic medications in institutions. The mental health needs of those with ID at this time were largely unrecognized and so ignored.
Ideologies, sociological theories, civil rights issues, and the normalization philosophy(1, 2) together with families’ organizations inspired current care practices and directed the way ID services developed.
Policy initiatives originating in the United States during the 1960s and 1970s produced profound and far-reaching changes offering the integration of people with ID into mainstream community life. Similar policies were adopted gradually around the world, particularly in North America, Europe, and Australasia, and in several countries the number of people with ID remaining in institutions has been drastically decreased. Deinstitutionalization of people with ID has been probably the largest social policy experiment of our time. Vivid accounts have been published recently offering enlightening narratives from individuals who were resettled in community living.(3) Overall people with ID and their families have benefited, having a better quality of life. Nevertheless, there are significant variations in the quality of community-based services and of the experiences of people who use them.(4)
Psychiatric disorders and ID (dual diagnosis)
Many service planners and providers assumed that psychiatric disorders in this population would substantially diminish when community care programmes had been put in place. With the implementation, however, of the deinstitutionalization process the need for services for people with ID and psychiatric disorders emerged as a major issue.
This is because a significant number of people with ID, 5 to 12 per cent of children(5) and 15.7 to 40.9 per cent of adults with ID(6) have psychiatric disorders and despite progress in care delivery systems, require appropriate input to manage their mental health needs, sometimes over considerable time. Behavioural or psychiatric disorders can impair people’s quality of life, cause regression of adaptive and intellectual functioning, and create unnecessary escalation of family stresses.
The presence of severe behaviour or psychiatric disorders in people with ID is one of the main reasons for the breakdown of community placements and of retention in residential environments that are more restrictive than otherwise required. Such people are at risk of being placed in out of area facilities(7) if local resources are not adequate to meet their assessment and treatment needs or ongoing support needs. These placements are often expensive and divert resources from developing local initiatives. The care provided may be inadequate and difficult to monitor. People may lose contact with families, friends, and those people and structures that previously supported them.
It has become clear that people with ID and mental health problems need services from both the ID network and the mental health system. The overall position of governmental policy has been that people with ID should have access to generic (i.e. for anyone with or without ID) health services, but with additional specialist (specifically for people with ID) support when needed.(8,9)
The argument for the provision of mental health care for people with ID from generic services appears sound and is supported widely.(10) Some argue that specialized services lead to stigmatization,
labelling, and negative professional attitudes. Others argue that special expertise is required for the diagnosis and treatment of psychiatric disorders in this population, because although it is theoretically possible to train staff in generic settings, the relatively small number of cases gives little opportunity for staff to gain or maintain the necessary skills.(11)
labelling, and negative professional attitudes. Others argue that special expertise is required for the diagnosis and treatment of psychiatric disorders in this population, because although it is theoretically possible to train staff in generic settings, the relatively small number of cases gives little opportunity for staff to gain or maintain the necessary skills.(11)
Problems arise particularly when admissions to adult acute inpatient units occur, as people with ID often require longer admissions, and may be vulnerable without additional support on the ward. Furthermore, people with ID represent a very heterogeneous group with a varied range of highly complex mental health needs which generic staff may feel ill equipped to meet.(10)
Menolascino(12) recommended that services be provided according to need and be delivered in the context of both ID and psychiatric disorders coexisting allowing for more appropriate treatment, support, service planning, and development. The result is to create a partnership between the mental health and ID service structures to ensure responsive supports and treatments to previously underserved individuals.
Models of services for people with psychiatric disorders and ID
There has been a growing interest internationally as to how to address this issue. Davidson and O’Hara(13) offer a comprehensive review of service developments for this population. Long-term resolution of behavioural or psychiatric disorders in persons with ID requires community-based activities. Hence since the year of publication of the first edition of the New Oxford Textbook of Psychiatry new developments in most countries of the world are community-based. The pace and form of change depends on each country’s unique historical perspective and national philosophies about care for people with ID.(14) However, resolution of an acute crisis may require, in addition to community-based psychiatric or behavioural resources, inpatient acute psychiatric assessment and treatment services, specialized outreach, emergency respite, or emergency behaviour stabilization services.
The most common models of services for adults with ID and psychiatric disorders that have emerged in recent years in the United Kingdom can be described as: (a) generic ID community-based multidisciplinary (interdisciplinary) teams, (b) specialist community-based mental service for people with ID.
Generic ID community-based multidisciplinary (interdisciplinary) teams
A multidisciplinary (interdisciplinary) team offers assessment and specialist services to people with ID. Initially, most of these teams were involved with deinstitutionalization, carrying out tasks such as identifying appropriately adapted and staffed houses, matching clients to live together, assessing health and social needs, and so on. Most of them have input from clinical psychologists and usually some input from a psychiatrist specializing in people with ID. Some teams have developed innovative ways of working with people with challenging behaviour often with severe ID. Members specializing in functional analysis and/or behavioural treatments strengthen such teams.
One considerable problem with this model has been the lack of links with mainstream mental health services. Despite the psychiatric input, such services may experience difficulties in meeting the mental health needs of people particularly those with mild ID and mental illness. The problems are extended to people with ID who may have additional forensic mental health problems, autistic spectrum disorders including Asperger’s syndrome and co-morbid conditions as well as those with borderline intellectual functioning.
Specialist mental health service for people with ID
Since 1982, the Community Mental Health in ID Service in South East London(10,15) has operated using this model. It has secondary and tertiary care functions. This Service includes outpatient clinics, outreach work, inpatient assessment and treatment, and consultation with community agencies. The clinical team comprises of psychiatrists, community psychiatric nurses, and administrative staff, and has a regular interface with clinical psychologists and behaviour support specialists. The clinical team also receives regular input from occupational therapists, speech therapists, and social workers. The composition and functions of the Service have evolved over a number of years. An integrated part of the Service is the provision of training to direct support care staff and others to promote and sustain the development of a competent workforce at every level, from direct care staff to managers and organizations.
There are three phases in providing clinical services: assessment, intervention, and follow-up.
The clinical team carries out a structured clinical assessment on all referrals with the additional application of standardized instruments, e.g. Aberrant Behaviour Checklist(16) and CANDID.(17)
Therapeutic interventions are based on multidisciplinary work and include medication and environmental manipulation, as well as psychological treatments such as anxiety management and cognitive behaviour therapy. Regular weekly clinical team meetings are held to review progress. Crisis prevention plans are developed to help families and service providers identify early signs of breakdown and to take appropriate action. Training is offered to improve the capacity of families and service providers, to better understand and respond to the mental health needs of people with ID. This includes seminars, books and videos as well as modelling and role-playing exercises. Ongoing support and consultation is also provided while other specific therapeutic interventions are implemented.
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