Residential Provision for Adult Persons with Intellectual Disabilities in Ireland

Background The type of accommodation provided for persons with an intellectual disability is a major indicator of the social policy for this client group. This is likely to vary within and across countries; hence the importance of undertaking national and international comparisons. Estimations of future need are also required to assist service planning. Method A database of all persons in receipt of intellectual disability services has been operating in the Republic of Ireland since 1995. In Northern Ireland, regional databases were used to provide similar information. Results Around 10 000 people live in some form of residential provision: 56% in special settings, 35% in ordinary housing and 9% in hospitals. Most residents were classed as having ‘severe’ disabilities and were aged over 35 years. There were marked differences in the amount and type of provision provided in the two parts of the island. This was also mirrored in differences across health service areas within each country. The demand for future places was greater in Northern Ireland. Conclusions A planning target of 3.5 places per 1000 adult population is proposed although substantial investments in services is required to achieve this. Longitudinal surveys are an important way of monitoring the impact of new policy initiatives.     

People with Intellectual Disabilities Living in Generic Residential Services for Older People in the UK

Background As part of a UK programme of work focusing on older people with intellectual disabilities, the circumstance of those who reside in generic services for older people were investigated. Materials and methods Questionnaires were sent to 2570 residential and nursing homes in 53 local authorities across the UK. Results Five hundred and thirty returned questionnaires identified 215 people with intellectual disabilities currently living in 150 homes. They were significantly younger than the other residents, and were placed in these homes more often because of organizational change or the ageing/death of a family carer, rather than any changes in their own needs. Several potential indicators of a low quality of life were identified, including limited opportunities to get out, to access day services, to have contact with family or friends and to receive input from professionals outside the home. Conclusions Attention needs to be given both to people with intellectual disabilities already residing in older people's services and to the prevention of further inappropriate placements.     

Specialist Versus Generic Models of Psychiatry Training and Service Provision for People with Intellectual Disabilities

Background Models of service provision and professional training differ between countries. This study aims to investigate a specialist intellectual disabilities model and a generic mental health model, specifically comparing psychiatrists’ knowledge and competencies, and service quality and accessibility in meeting the mental health needs of people with intellectual disabilities. Method Data were collected from consultant and trainee psychiatrists within a specialist intellectual disabilities model (UK) and a generic mental health model (Australia). Results The sample sizes were 294 (UK) and 205 (Australia). Statistically significant differences were found, with UK participants having positive views about the specialist intellectual disabilities service model they worked within, demonstrating flexible and accessible working practices and service provision, responsive to the range of mental health needs of the population with intellectual disabilities, and providing a wide range of treatments and supports. The UK participants were knowledgeable, well trained and confident in their work. They wanted to work with people with intellectual disabilities. In all of these areas, the converse was found from the Australian generic mental health service model. Conclusions The specialist intellectual disabilities model of service provision and training has advantages over the generic mental health model.     

Participation in Sports by People with Intellectual Disabilities in England: A Brief Report

Background Participation in sports has been linked to a range of physical, social and mental health benefits. Little is known about the extent to which people with intellectual disabilities take part in sports. This study looks at participation in sports and factors associated with participation by people with intellectual disabilities in England. Method Data on participation in sports and measures of personal characteristics, living situation, social participation, and socioeconomic status associated with participation were analysed based on a sample of 2784 people with intellectual disabilities in England. Results Overall, 41% of participants had taken part in sports in the past month, nearly all of whom had enjoyed it. Of those who did not take part, 34% said they would like to. Participation in sport was associated with some personal characteristics but not with support needs, and was also associated with indicators of socioeconomic status. Conclusions Targeting interventions to increase participation in sports by people with intellectual disabilities may make a significant contribution to improving their health and well‐being.     

Care Standards in Homes for People with Intellectual Disabilities

Background National minimum standards for residential care homes were introduced following the Care Standards Act 2000 in response to concern about the lack of consistency and poor quality services. These standards are intended to reflect outcomes for service users and to be comprehensive in scope. Method This study compared ratings made by care standards inspectors with research measures for 52 homes for people with intellectual disabilities serving 299 people. The research measures focused on the lived experience of residential care, including engagement in meaningful activity, choice and participation in activities of daily living. They also included measures of related care practices and organizational arrangements. Results The research measures were in general significantly correlated with each other. Most of the care standards ratings were also correlated with each other. However, only two of 108 correlations between care standards and research measures were significant. Possible reasons for this are discussed. Conclusions This study confirms that the review of national minimum standards and modernization of inspection methods recently announced by the Department of Health and the Commission for Social Care Inspection are timely and appropriate.     

Readiness for Cognitive Therapy in People with Intellectual Disabilities

Aims Cognitive therapies are increasingly being offered by clinical psychologists to people with intellectual disabilities. This paper reviews some of the factors that influence people's readiness to engage in cognitive therapy. Literature review Limited verbal ability, psychological‐mindedness (particularly in relation to the understanding of emotions and the mediating role of cognitions), and self‐efficacy, are all likely to present significant barriers. There may also be motivational barriers to treatment, including the functionality of some psychological presentations, maladaptive beliefs promoting resistance to change, the intellectually challenging nature of cognitive therapy, and external factors such as inappropriate settings. Engagement with therapy can be promoted by involving carers to support the therapy, but carers may themselves display a range of limitations of ability and motivation similar to those displayed by clients, which need to be recognized, and where possible addressed, in order for their involvement to be effective. Recommendations If barriers to treatment are recognized, significant steps can be taken to increase accessibility. In addition to simplifying the delivery of therapy, there is also scope to simplify the model; this point is illustrated by case examples, and some principles for formalizing modifications to standard procedures are suggested. As barriers to treatment can often be surmounted, a decision whether or not to offer cognitive therapy should be derived from a comprehensive formulation, and should never be based solely on a client's performance on tests of cognitive ability.     

High Cost Residential Placements for Adults with Intellectual Disabilities

Background Concern has been expressed repeatedly about the cost and quality of residential placements for adults with learning disabilities and additional needs. This study sought to identify characteristics of the highest cost placements in the South‐East of England. Method Lead learning disability commissioners in the South‐East of England were asked to provide information about the five highest cost residential placements that they commissioned for adults with learning disabilities. Results The average placement cost of £172k per annum disguised wide variation. Individuals placed were mainly young and male with high rates of challenging behaviour and/or autism spectrum disorder. Most placements were in out‐of‐area residential care. The highest costs were associated with hospital placements and placements for people presenting challenging behaviour. Conclusions Young, male adults with learning disability, challenging behaviour and/or autism continue to receive very high cost residential support, often in out‐of‐area residential care. There remains limited evidence of plans to redirect resources to more local service developments.     

Self‐Harm Among People with Intellectual Disabilities Living in Secure Service Provision: A Qualitative Exploration

Background Research into self‐harm among people with intellectual disabilities has focused predominantly on high frequency internally maladaptive behaviour among people whose disability is severe or profound. Research into different forms of self‐harm, such as cutting or burning the skin, found in those with mild intellectual disabilities; especially those living in secure accommodation, has largely been neglected, although there has been recognition of its impact on individuals and staff working in this field. This study aimed to address this issue through exploration of the experiences and understanding of self‐harm among people with intellectual disabilities living in secure accommodation. A second aim was to explore experiences of interventions associated with this behaviour. Method and Results Semi‐structured interviews were carried out with nine people who self harm, have intellectual disabilities and had been placed in secure accommodation. Interpretative Phenomenological Analysis yielded three master themes. The first related to the interpersonal context of self‐harm and included sub themes relating to past experiences of abuse and loss, and current issues of control and protection. The second master theme related to the emotional experience of self‐harm, which varied throughout the process of self‐harm and was characterized by anger, frustration, hopelessness, relief, guilt and regret. The third master theme related to the management of self‐harm. Participants had experience of helpful individual and collaborative strategies, as well as interventions that were experienced as controlling, unhelpful or ridiculing. Conclusion Emerging themes are considered in relation to the wider‐self‐harm literature and current psychotherapeutic models. A number of limitations to the study are noted and the use of this methodology with people with intellectual disabilities was discussed.     

Adaptive Behaviour Gains in Ordinary Housing for People with Intellectual Disabilities

Fifty-one residents of 14 staffed houses for people with intellectual disabilities were assessed using the Adaptive Behavior Scale (ABS) at the beginning, middle and end of a two year period. Changes in ABS score were calculated to ascertain whether residents experienced continued development once the immediate period following resettlement from institutional services was past. Although some individuals changed little and some lost skills, ABS scores were found to increase significantly over time, particularly among the least able residents. This latter finding prompted further investigations. Conversion to percentile ranks was undertaken to provide a better basis for comparison between individuals as the raw scores cannot be interpreted as an equal interval scale. Unreliability of measurement provided a further reason for caution. Changes in percentile rank scores were relatively modest when compared to the level of unreliability. Moreover, the consistency of change found for individuals across both years of the study period was unconvincing, with the number of times change was in the same direction being only similar to that which would be predicted by chance. Overall, the study demonstrates the difficulties encountered in trying to establish whether improvements in personal competence are ongoing in community residential services for people with intellectual disabilities.     

Mortality of Parents of People with Intellectual Disabilities

Background The experience of caring for a son or daughter with an intellectual disability has long been recognized as stressful. The long‐term health costs for parents of people with intellectual disability have attracted some recent research attention, but mortality has not been studied. Methods The present authors examined mortality as measured by the standardized mortality ratio (SMR), and cause of death for parents of people with intellectual disability, identified through an intellectual disability register in Merton, south London. Results Although there was a trend for lower SMRs particularly for mothers, SMRs were not significantly different from unity. Subgroups of parents whose child was cared for predominantly in an institution, or in the family home were analysed and similarly showed no significant difference from unity. The same applied to cause of death analyses. Conclusions These findings offer some reassurance to parents of people with intellectual disability. There is an urgent need for further research in this area.     

Friendship,Quality of Life,and People with Intellectual and Developmental Disabilities

People with intellectual and developmental disabilities (IDD) often have fewer opportunities to create and maintain friendships. In fact, it is not uncommon for people with IDD to consider their paid staff friends, which is problematic given high staff turnover and a lack of reciprocity, a key element of friendship. The aim of this study is to explore the relationships between friendship and quality of life of people with IDD. We had two main research questions: 1) what factors predict people with IDD having friends (outcomes present)?; and, 2) how does having friends (outcomes present) impact the quality of life of people with IDD? To do so, this study analyzed Personal Outcome Measures^® interviews data from approximately 1300 people with IDD exploring the relationships between friendship and factors at individual, organizational, and societal levels. Findings revealed friendship predicts improved outcomes in almost every area of one’s life; as such, it is critical to promote the development, maintenance, and growth of friendship of people with IDD. To do so, organizations need to make it best practice to facilitate the friendships of the people they serve. Systemic issues also need to be addressed in order to promote the friendships of people with IDD.     

Community‐based Residential Supports for People with Intellectual Disabilities and Challenging Behaviour: The Views of Neighbours

Background The issue of the views of neighbours of community‐based residential supports for people with intellectual disabilities and challenging behaviour has not been examined till date. This study looks at the views of neighbours of two types of community‐based residential supports: non‐congregate settings where the minority of residents have challenging behaviour; and congregate settings where the majority of residents have challenging behaviour. Materials and methods A self‐completion questionnaire was used to collect information on contact between neighbours, residents and staff, and the views of neighbours. Information was also collected by semi‐structured interview with service staff on the characteristics of settings. Results Sixty‐four questionnaires were returned. Contact between neighbours and service users was limited for both types of setting, with two‐thirds of neighbours not knowing any service users by name, and a third having had no active contact with service users. Neighbours of non‐congregate settings were more likely to think that community care was a ‘good policy’ (76%) than neighbours of congregate settings (53%) and to believe that there were benefits to the neighbourhood from having the group home in the area (46% versus 29%) but these differences were not significant. Contact with people with intellectual disabilities was associated with more positive attitudes to community care and specific characteristics of the settings. Conclusions Contact between neighbours and people with severe intellectual disabilities and challenging behaviour is limited. However, the majority of neighbours are positive about community care and the problems reported by neighbours are predominantly minor. The results point to the key role that contact plays in fostering positive attitudes. Findings regarding differences between congregate and non‐congregate settings are limited by the small number of responses from neighbours of congregate settings.     

Benefit Groups and Resource Groups for Adults with Intellectual Disabilities in Residential Accommodation

Service commissioning is now a more formalized activity, and both purchasers and providers employ a variety of tools to inform their decision‐making. The present paper examines whether ‘benefit groups’ and ‘resource groups’ can be developed so as to assist these decision‐making processes by using a survey of the characteristics of 2093 adults with intellectual disabilities (IDs) in residential accommodation (mainly National Health Service trusts), and a supplementary collection of data on service utilization and costs (for a subsample of 930 clients). The clients were classified, according to their needs benefit groups (BGs), and the services which they used were classified in terms of coherence as likely packages of care and similar consumption of resources as resource groups (RGs). It proved possible to construct nine BGs and 96 possible RGs which had both intuitive meaning and explanatory power. Statistical analysis showed that the resulting BGs and RGs are meaningful ways of classifying ID and challenging behaviour needs and costs.     

Service Provision for Young People with Intellectual Disabilities and Additional Mental Health Needs: Service‐providers’ Perspectives

Background Very little is known about young people with intellectual disabilities who experience additional mental health problems. The perspective of service providers has been highlighted as one unresearched area. Method Semi‐structured interviews were completed with senior service providers. Aims: (1) to explore experiences of working with young people with intellectual disabilities and additional mental health problems and their families; (2) to examine views on services’ ability to meet the needs of this group. Results Service providers identified a gulf between current policy and the reality for this group, not least in terms of all agencies working in partnership. All agencies described instances when young people in this group fall through gaps between services. Interviewees identified a range of factors that promote good outcomes. Conclusions The results suggest that the focus of current policies to promote joint working needs to be broadened beyond health and social services to ensure much improved links with education providers and the voluntary sector if the needs of this group are to be met.     

Roles of General Practitioners in the Provision of Health Care Services for People with Intellectual Disabilities: A National Census in Taiwan

Aims The aims of the present study were to explore the perceptions of general practitioners (GPs) in the provision of health care services for people with intellectual disabilities and to analyse GPs’ priorities in the delivery of health care services to this group of people in Taiwan. Methods The study employed a cross‐sectional design and was conducted by a census method, the aim being to collect information from all GPs in Taiwan. A questionnaire was mailed out, between 10 April 2006 and 16 June 2006, and the responses provided by 331 GPs (response rate = 16) were included in the analysis. Results The results showed that most of the respondents did not have sufficient experience to deal with patients with intellectual disabilities and lacked adequate knowledge about intellectual disabilities. Indeed, respondents expressed the need for on‐the‐job training in the field of intellectual disabilities and generally agreed that their role in providing health care services for people with intellectual disabilities was important. However, they were generally not satisfied with the achievements of their role on health care issues. The study highlighted that many issues need to be prioritized for people with intellectual disabilities in relation to policy planning at different health care stages (primary, secondary and tertiary health care). The results also revealed that those senior GPs with considerable experience in treating people with intellectual disabilities were more likely satisfied with their role in providing health care for this group of people. Conclusions It is concluded that Taiwanese health and welfare authorities need to focus more carefully on issues concerning deficiencies in the training of GPs, and to employ appropriate strategies to address health care issues raised in the present study so as to improve the quality of care for people with intellectual disabilities.