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Although high rates of depression symptoms are reported in adults with intellectual disabilities (IDs), there is a lack of knowledge about non-pharmacological treatment options for depression in this population. The first research question of this paper is: Which non-pharmacological interventions have been studied in adults with ID and depression? The second research question is: What were the results of these non-pharmacological interventions?Systematic review of the literature with an electronic search in six databases has been completed with hand searches. Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines have been followed. Selected studies met predefined inclusion criteria.Literature search resulted in 4267 papers of which 15 met the inclusion criteria. Five different types of non-pharmacological interventions have been studied: cognitive behavioural therapy, behavioural therapy, exercise intervention, social problem-solving skills programme and bright light therapy.There are only a few studies of good quality evaluating non-pharmacological interventions for adults with ID and depression. Some of these studies, especially studies on cognitive behavioural therapy, show good results in decreasing depressive symptoms. High-quality randomised controlled trials evaluating non-pharmacological interventions with follow-up are needed.

People with intellectual disabilities have very high rates of mental ill health. Standard psychosocial interventions designed for the general population may not be accessible for people with mild intellectual disabilities, and drug usage tends to be modified - 'start low and go slow'. This systematic review aims to synthesise the evidence on psychological, pharmacological and electroconvulsive therapy (ECT) interventions for adults with mild intellectual disabilities and mental ill health.PRISMA guidelines were followed. Medline, Embase, PsycINFO and CINAHL were searched, as was grey literature and reference lists of selected papers. Papers were selected based on pre-defined inclusion and exclusion criteria. A proportion of papers were double reviewed. Data was extracted using a structured table.PROSPERO 2015:CRD42015015218.Initially, 18 949 records were identified. Sixteen studies were finally selected for inclusion; seven on psychological therapies, two on group exercise, five on antipsychotics and two on antidepressants. They do not provide definitive evidence for effectiveness of psychosocial interventions, nor address whether starting low and going slow is wise, or causes sub-optimum therapy.There are few evidence-based interventions for people with mild intellectual disabilities and mental ill-health; existing literature is limited in quantity and quality. Group cognitive-behavioural therapies have some supporting evidence - however, further randomised control trials are required, with longer-term follow-up, and larger sample sizes.

ASC (autism spectrum conditions) may result from a failure of striatal beta endorphins to diminish with maturation. Many symptoms of ASC resemble behaviours induced in animals or humans by opiate administration, including decreased socialisation, diminished crying, repetitive stereotypies, insensitivity to pain and motor hyperactivity. Naltrexone, an opioid antagonist, has been used in the management of children with ASC and can produce a clinically significant reduction in the serious and life-threatening behaviour of self-injury for individuals who have not been responsive to any other type of treatment and is important for this reason. It was therefore appropriate to reconsider the available evidence and a systematic review was undertaken.Four electronic databases were searched for relevant journal articles. In addition, cross-referencing of pertinent reviews and a hand search for articles in major international intellectual disability (ID) journals between the years 2010 and 2012 was carried out to ensure that all relevant articles were identified. We also searched databases for unpublished clinical trials to overcome publication bias. Each database was searched up to present (February 2013) with no restrictions on the date of publication. The search terms consisted of broad expressions used to describe ID and autistic spectrum disorder as well as terms relating to opioid antagonists and specific drugs. All studies identified by the electronic database search and hand search were examined on the basis of title alone for relevance and duplication. The abstracts of the remaining papers were then scrutinised against the inclusion criteria. Where abstracts failed to provide adequate information, the full texts for these papers were obtained. All the full texts were then evaluated against the inclusion proforma. Two reviewers carried out all the stages of the process independently. The reviewers met to discuss their selections and where disagreements arose, these were settled by discussion with a member of the study group. Data from each study meeting the inclusion criteria were extracted on a pre-piloted data extraction form. The quality of each study was further assessed using the Jadad scale, a tool developed to assess the quality of randomised controlled trials.155 children participated in 10 studies; 27 received placebo. Of the 128 that received naltrexone 98 (77%) showed statistically significant improvement in symptoms of irritability and hyperactivity. Side effects were mild and the drug was generally well tolerated.Naltrexone may improve hyperactivity and restlessness in children with autism but there was not sufficient evidence that it had an impact on core features of autism in majority of the participants. It is likely that a subgroup of children with autism and abnormal endorphin levels may respond to naltrexone and identifying the characteristics of these children must become a priority.

Self-injury in people with intellectual disability (ID) may be due to variety of factors both environmental and biological. As the drive in UK is to manage people with ID and problem behaviours in the community, it is important to critically examine all treatment options available. As abnormalities in the endogenous opioid system may be a factor in some people with ID, we undertook a systematic review to evaluate the evidence for the effectiveness of opioid antagonists.Four electronic databases were searched for relevant journal articles. In addition, cross-referencing of pertinent reviews and a hand search for articles in major international ID journals between the years 2010 and 2012 was carried out to ensure that all relevant articles were identified. We also searched databases for unpublished clinical trials to overcome publication bias. Each database was searched up to present (February 2013) with no restrictions on the date of publication. The search terms consisted of broad expressions used to describe ID and autistic spectrum disorder as well as terms relating to opioid antagonists and specific drugs. All studies identified by the electronic database search and hand search were examined on the basis of title alone for relevance and duplication. The abstracts of the remaining papers were then scrutinised against the inclusion criteria. Where abstracts failed to provide adequate information, the full texts for these papers were obtained. All the full texts were then evaluated against the inclusion proforma. Two reviewers carried out all the stages of the process independently. The reviewers met to discuss their selections and where disagreements arose, these were settled by discussion with a member of the study group. Data from each study meeting the inclusion criteria was extracted on a pre-piloted data extraction form. The quality of each study was further assessed using the Jadad scale, a tool developed to assess the quality of randomised controlled trials.Out of 10 randomised control trials eight reported a reduction in the frequency of self-injurious behaviour. This meant that 62 participants out of 124 (50%) showed an improvement of which 61 were statistically significant. Forty-nine participants had autism. Eleven (9%) had minor side-effects. The improvement was more marked in people with severe and profound ID and was not affected by the coexistence of autism.This review suggests that some people respond to opioid antagonists with a reduction in self-injury but the trials do not predict who they may be. Future research may identify this sub-group when opioid antagonists may prove to be a useful addition in the pharmacotherapy of self-injury.

How do human rights help us with the experiences of people with intellectual disabilities (ID) who face discrimination and barriers in their sexual lives? Men with ID who are gay face a whole range of rights violations when it comes to exercising their sexual identity. How can such a seemingly marginalised group draw on rights based claims for better and equal treatment? This paper explores how the power of men's own stories may usefully challenge prevailing social norms and in turn strengthen human rights claims in this area. It also reflects on the challenges posed to such an agenda by current economic difficulties and changes in the organisation of adult social care in the UK.The paper draws on empirical research with gay men with ID completed in the UK in 2005 and briefly revisits some key messages from the data. It also considers the wider literature on the power and possibilities of human rights, 'intimate stories' and translating human rights into everyday change.Gay men with ID tell powerful stories of love, longing and exclusion. Such stories have the capacity to transform wider social attitudes and in turn strengthen the rights claims of this marginalised groups. There are question marks about the possibility of such change in a time of austerity and the broader move in the UK's welfare state from the collective to the individual consumer of services. However, the telling of men's 'intimate stories' creates an almost unassailable challenge to current discriminatory practices and norms.

Historically, intervention programmes in intellectual and developmental disabilities have targeted the individual's special needs independent of the family and environmental context. This trend has been changing over the past two decades. This paper presents a literature review on changing trends in family support and the development of family quality of life (FQOL) and intellectual disability from a construct to a theory. The evolution of research in quality of life from the perspective of the individual with the disability to the family is described. A description of the development of FQOL measures is included, specifically an introduction and comparison of the two leading comprehensive initiatives on measuring FQOL - international FQOL project and the FQOL initiative of the Beach Center on Disability, in the USA. This paper provides the conceptual background and context to the other papers presented in this special issue, which focus on FQOL measurement in specific contexts.

Most research into interactions with people who are congenitally deafblind involves observational data. In order for practitioners and researchers to have confidence in the findings of observational studies, researchers need to demonstrate that the processes employed are replicable and trustworthy. This paper draws on data from an observational study of adults with congenital deafblindness to illustrate issues in determining inter-rater reliability, and interpreting observational data.Data from 34 10-min observations of adults with congenital deafblindness and their interactions with support staff were assessed for inter-rater reliability using percentage agreement calculated in three different ways and Cohen's κ.Large variation resulted from the different ways in which inter-rater reliability was calculated, largely due to high levels of non-occurrence of many behaviours in the coding tool used.This study highlights the need to exercise caution when ascertaining the reliability of observational studies and demonstrates the value in using multiple methods for calculating inter-rater reliability. The paper concludes with an examination of the potential merits of using consensus coding in observational studies of interactions with people with congenital deafblindness or profound intellectual and multiple disabilities.

Previous research has demonstrated that people with mild intellectual disabilities (ID) have difficulty in 'weighing up' information, defined as integrating disparate items of information in order to reach a decision. However, this problem could be overcome by the use of a visual aid to decision making. In an earlier study, participants were taught to translate information about the pros and cons of different choices into a single evaluative dimension, by manipulating green (good) and red (bad) bars of varying lengths (corresponding to the value ascribed). Use of the visual calculator increased the consistency of performance (and decreased impulsive responding) in a temporal discounting task, and increased the amount of information that participants provided to justify their decisions in scenario-based financial decision-making tasks.The present study examined some practical aspects of visual calculator training, using a pen-and-paper version of two temporal discounting tasks. Participants with mild ID were tested, individually and in a group setting, before and after training in the group setting, and 2 months later.(i) The visual aid improved temporal discounting performance using pen-and-paper presentation in a group setting as effectively as previously demonstrated using computer-based individual presentation. (ii) Following withdrawal of the aid, improvements in temporal discounting performance were maintained at 1 day post training, but lost following a 2-month hiatus; however, participants showed perfect retention, over 2 months, of how to use the aid. (iii) In addition to decreasing impulsivity in a hypothetical task, as previously demonstrated, use of the visual calculator also increased the ability of impulsive participants to wait in real time.The results suggest that the visual calculator has practical applicability to support decision making by people with mild ID in community settings.

The use of out-of-area placements to meet the needs of individuals with intellectual disabilities and challenging behaviour has been increasing in the UK. Such placements claim a large proportion of service budget expenditure; therefore, it is important to consider whether they offer the best-quality care. This paper reports on current evidence relating to such placements and uses a scoping review across five London boroughs to illustrate key issues on provider characteristics and aspects of good practice.We conducted a literature review to identify papers that describe out-of-area placements and carried out a postal survey of 54 service providers that delivered services to service users from five London boroughs.Individuals with intellectual disability and challenging behaviour are more likely to be placed out-of-area in services of variable quality and a minority may underperform. Our empirical data suggest that the private sector that is the main accommodation provider is most likely to underperform on meeting standards of care.Overall, the majority of out-of-area providers appear to supply a good standard of care but there are many factors that continue to hinder the local treatment of individuals who present with challenging behaviour. There is an imperative to identify poorly performing providers as well as exploring ways in which service users, out-of-area, can be supported effectively.

Women with intellectual disability (ID) are surviving to the age group at greatest risk of developing breast cancer (50-69 years). These women are more likely to experience a greater number of risk factors placing them at an advanced threat of developing breast cancer. However, as a result of cognitive deficits and communication difficulties these women are dependent upon staff to support them to attend the breast screening clinics.The aim of this paper was to examine how community nurses and residential staff support women with ID to access breast screening services.Six focus groups were held with community nurses and residential staff who work in the field of ID in one region of the UK. The focus groups were tape recorded and the transcriptions were subjected to a thematic content analysis.Although many of the participants recognised the risk factors and signs/symptoms of breast cancer, there was still a deficit of knowledge. Both positive and negative experiences of women with ID attending for breast screening were reported; however, greater discussion focused on the latter. The participants identified 'a lack of health educational material' and also negative 'emotions, attitudes and physical barriers' as inhibiting factors for attendance.This paper highlights the need for developing a health promotion programme for women with ID focusing on breast awareness and information on screening, and also healthier lifestyles. Breast awareness via visual checks was identified for women with ID who refused to attend the breast clinics; however, issues of informed 'consent' and 'vulnerability' were raised for staff and also family carers having to undertake these checks. Development of user-friendly health educational literature using 'pictures, symbols, signs' and simplified words should be accessible to all ID staff, healthcare staff, and also women with ID.

This paper examines the history of care in modern society and seeks to expose how deep transformations in care arise from wider social relations. From historical survey we may discern a series of transitional points, where the practice and the experience of care was greatly, sometimes suddenly, redefined. Each betrayed deeper political and ethical struggles that went to the core of social relations, and which weren't merely therapeutic in nature. This paper explores two such 'moments'. I first examine the emergence of a new institutional landscape during the middle industrial era, in the wake of a series of legal and political reforms that sought to settle a social order uprooted and distressed by raw modernisation. I provide a composite, yet incomplete view, of how this transformation proceeded in one urban setting, colonial Melbourne. In the second instance, I review the ambitions and process of deinstitutionalisation in the late 20(th) century. Ostensibly, this reform sought, inter alia, to collapse the great division between 'fit' and 'unfit' established in 1834. Again, empirical reference is made to the reconstitution of care in Melbourne, Australia, this time during its late 20th experience of institutional reform. The focus in this case is the process of downscaling and closure for a major congregate facility, Kew Cottages. The major conclusion is that periods of intense transition in the ideology and mode of care are reflective of wider social transformations not merely of therapeutic or institutional shifts.

Recent studies in the development of professionalism suggest that western society witnesses a transformation of professional practices in human services that deeply affects how professionals experience their work. This paper describes key aspects of this development and presents an account of how it can be explained.The paper offers a review of the main features of neoliberal managerialism as it is found in the literature. The paper does not assume a meta-theoretical perspective on this literature but rather presents an account on the level of description of what the literature interprets as a transformation of professional practices. Its method is therefore to report the main features of what the literature describes as neoliberal changes in human services.The review results in an account of the transformation of professionalism in human services that shows two sides. One is that of opposing logics that present the tensions between professionalism and managerialism in terms of conflict. The other side is that of compliance of professionals who seek to find their way in the new realities of a neoliberal service economy.I conclude that neoliberal managerialism presents serious challenges to professionals in human services to remain faithful to the values of their profession, and that these challenges--on the level of neoliberal society--raise a serious issue about social (dis)trust.

Complicated grief has been identified as a phenomenon in the general population, and there is an increasing body of research investigating complicated grief in people with intellectual disability. The aim of this study is to synthesise this existing knowledge from research published between 1999 and 2022.A structured systematic review using PRISMA guidelines was conducted, which searched three commonly used databases (Medline, PsycINFO and CINAHL) for research on the topic of bereavement and intellectual disability. The articles identified in this search were screened to identify those that addressed the issue of 'complicated grief', with all abstracts and subsequent full texts reviewed by two researchers.In total, 179 abstracts were initially identified, with 34 articles eligible for full text screening and 18 papers reaching criteria for inclusion. Data relating to the studies' objectives were extracted under the headings of definition, defining principles, signs and symptoms, risk factors and treatments for complicated grief in intellectual disability. Thematic analysis of the extracted data was performed to identify key themes.This review highlights that people with intellectual disability are likely to experience complicated grief reactions and that complicated grief is both underestimated and a clinically significant condition for people with intellectual disability. Future research should work to clarify diagnostic criteria and identify appropriate interventions.

Background This paper seeks to understand and conceptualize the experience of mothers of adolescents with intellectual disabilities (IDs) at a time in their lives which others have characterized as ‘mid-life’ or the ‘middle years of parenting’. The concerns of the paper are the lifecourse concerns in mothers’ own lives and with biographical elements of becoming and being such a parent. Methods Qualitative interviews were conducted with mothers of adolescents with IDs. The average age of mothers was 48 years. Typically parents were interviewed on two to three occasions. Results The data suggest that despite the difficulties they faced, these parents had constructed a ‘life-as-ordinary’ in the early phase of their parental careers. They saw themselves as ‘ordinary mothers’. However, the social content and events of the middle years of parenting prompt a realization that their lives and, for some, their sense of ‘self’, are undergoing considerable change. Mothers are forced to look over their lives to find the meaning and significance of these events. For some, there is biographical reinforcement. For others, there is only disruption. Discussion The overall picture of these years is one of considerable changes and challenges, and underlines the need for a focus on the lifecourse concerns of parents as well as their children. The implications of the data for further research and service development are discussed in the context of identity theory.

The measurement of subjective well-being is challenging with samples of adolescents with intellectual disability (ID) given the cognitive and linguistic difficulties they face in comprehending standardised measures, and as such is primarily based on proxy reports. The lack of appropriate tools needs to be addressed so that adolescents with ID can self-report on their own well-being. The current study reports on the use of participatory research methods to adapt and modify two standardised self-report measures of subjective well-being suitable for completion by adolescents with ID.Two special schools were recruited for this study. At each school, staff (n = 15) and pupils aged 11-17 years (n = 35) participated. A series of co-design workshops were conducted to adapt two standardised subjective well-being measures: Kidscreen-10 and short-form Warwick-Edinburgh Mental Well-being Scale.Specific aspects for measure adaption were identified: simplifying the item wording and phrasing; inclusion of pictorial communication symbols and visual prompts to represent the meaning of items; changing of tense of questions from past to present; asking questions rather than statements; reducing 5-point Likert scales to 3-point or dichotomous; presenting one item at a time during administration; and developing alternate formats of the survey to ensure inclusivity.This paper illustrates the value of using participatory research methods when working alongside adolescents with ID and offers methodological, as well as practical, guidance in the context of adapting subjective self-report measures for this target group, serving as a guide to fellow researchers and clinicians interested in modifying or developing self-report measures for adolescents with ID.

In recent years, a growing volume of research evidence has been generated about the relative cost-effectiveness of various types of community-based residential supports for people with intellectual disability (ID) in the UK. However, few reliable data are available to inform planners, commissioners or service providers about the quality and costs of providing support within residential or village communities.The evaluation described in the present paper aimed to fill some of the gaps in knowledge by examining the comparative costs of supporting people in village community settings, in National Health Service (NHS) residential campuses and in dispersed, community-based housing schemes. The complete service package received by each study participant was described and costed, and a series of statistical analyses was undertaken to identify factors associated with variations in the cost of support. The analyses reported in the present paper were based on comparisons of 86 people living in village communities, 133 in residential campuses and 281 in dispersed housing schemes.Wide variations in cost were found, not only between models of accommodation, but between individual organizations, settings and service users. Multivariate analysis revealed that higher costs were associated with supports for people with higher levels of ID and more severe challenging behaviour. The cost of support was affected by the size of the residential setting, with smaller facilities likely to be more expensive. Associations were also found between increased costs, and services for younger users, male users and people who had not moved from a NHS hospital. Generally, more sophisticated service processes within the setting were associated with higher costs; although systematic arrangements for supervision and training of staff had a negative effect on cost.The cost findings should be considered alongside evidence on outcomes. A comparison of village communities and dispersed housing schemes suggests that both models of provision appear be associated with particular benefits, although different types of setting are appropriate for different individuals and therefore, the continued development of a range of residential models is important.

The purpose of this paper is to present an overview of current trends in the field of dual diagnosis in the United States. Policy, programme, diagnostic and treatment issues are reviewed. The paper will examine the effects of the social policy of deinstitutionalization on people who have a dual diagnosis and will offer policy ideas for ameliorating some of the significant obstacles facing this population. Exemplary programme models are briefly discussed to illustrate the development of effective services. The challenges of assessing psychopathology in people with mental retardation are addressed. Several therapy and treatment modalities that have proven to be effective with people who have a dual diagnosis are also discussed. Lastly, this paper mentions a new community ideology driven by the values of consumers choice and satisfaction.

This paper explored the health beliefs and behaviours of families towards the health needs of children with intellectual and developmental disabilities (IDD) in Accra, Ghana. The aim was to inform health promotion strategies for the children and their families.Twenty-two parents of children with IDD participated in this study. Semi-structured interviews were the primary means of data collection. The interviews were analysed using constant comparison.The signs that alerted the parents that the children might be ill included high temperature, vomiting and excessive sleep. The parents explained that some children expressed feelings of ill-health through verbal or non-verbal communication. Most of the parents self-prescribed medication for the children or waited for symptoms to persist for a while before accessing health care because they experienced difficulties managing the behavioural challenges associated with the IDD of the children in public and attitudinal barriers when accessing health care. The parents did not often patronise health facilities in their neighbourhoods due to private health insurance requirements for accessing care at designated facilities, poor confidence in neighbourhood facilities and long-term established relationships with facilities elsewhere. Further, many parents did not patronise religious interventions for the children. However, some parents explained that in addition to seeking medical care to address the physical symptoms of the children's disabilities and/or illnesses, they sought religious interventions because they believed that there could be a spiritual dimension to the situation.The findings highlight key areas to address in health promotion for children with IDD and their families in Accra, Ghana.

The purpose of this study was to find differences in general life satisfaction in adolescents with mild intellectual disability (MID) with respect to exhibiting a prosocial or an antisocial coping style. According to the ecological approach, using the antisocial style in a competitive school environment (a zero-sum game) may increase personal satisfaction, while in the family, which operates on the principles of 'common good' or 'common failure' (a non-zero-sum game), the antisocial style may reduce general satisfaction of the individual. However, according to the self-regulatory approach, antisocial coping in interactions with parents and teachers in adolescence may increase life satisfaction as it heightens the individual's sense of autonomy. The differences between the two approaches in the hypothesised influence of a particular coping style on life satisfaction led us to conduct empirical research.A total of 151 students with MID were qualified for the final study (75 females and 76 males). The age of the examined group varied from 18 to 22 years. The study was conducted using the R-PDPI test, which is based on the Strategic Approach to Coping Scale by Hobfoll (). The test measures coping with domination and humiliation from parents and teachers as well as isolation and humiliation from peers (Kurtek ). Next, the Index of General Affect by Campbell et al. () was used to assess general life satisfaction.Generally, a positive relationship between the indirect prosocial style and life satisfaction was found. Also, the results indicate that using the prosocial coping style to deal with humiliating acts of the mother and dominant acts of the father was connected with increased general life satisfaction, whereas the antisocial coping style employed in these situations - with a lower level of satisfaction. Moreover, it was found that general life satisfaction was positively related to passive and suppressive coping styles but negatively correlated with the antisocial coping style in situations of isolation and humiliation from peers. The paper ends with the discussion and interpretation of the results.

Several studies show that socio-economic status (SES) is related to the developmental trajectories of children with typical development (TD). However, few studies have analysed this relationship regarding children with neurodevelopmental disorders such as Down syndrome (DS). In this paper, we analyse the impact of SES in the neurodevelopmental trajectories of children with DS in comparison with children with TD.Cognitive, language, motor and socio-emotional development were assessed in 31 children with DS between the ages of 15 and 80 months from high to low SES backgrounds. Data from this group were compared with data from a sample of 72 children with TD randomly selected from the Longitudinal Survey of Early Childhood. We analyse and compare these two groups using the developmental trajectories method RESULTS: The results show delayed onsets for the four abilities measured in children with DS compared with children with TD from high to low SES. In the comparison of the developmental trajectories, we found that the differences between the neurodevelopmental trajectories in DS and TD vary according to SES. High SES show differences only in language development, while low SES show significant differences in cognitive, language and socio-emotional development.The results indicate that SES is a factor that could impact the developmental trajectories of children with DS. Although the differences between children with DS and with TD are similar at the beginning regardless of SES, the developmental trajectories are slower in children with DS of low SES than in children of high SES. We argue that the differences are related to the complex interaction of several biological and cultural factors associated with SES. Some specific hypotheses about nutrition, health care access, quality of education and parenting practices are presented, but more research in this area is needed to fully understand these results.

The UN Convention on the Rights of Persons with Disabilities (CRPD) provides the benchmark for assessing human rights and citizenship for people with disabilities. This emphasises autonomy, choice, independence, equality and participation for individuals as its fundamental guiding principles.This paper explores the exercise of human rights and citizenship for older adults with intellectual disabilities (ID) in Ireland, including choice-making, advocacy and political participation. Cross-sectional data (n = 701) is drawn from wave 2 of the Intellectual Disability Supplement to The Irish Longitudinal Study on Ageing. Rates of participation are reported, along with bivariate associations across a range of demographic, personal and social variables, while factors associated with level of choice-making and voting are explored.We found very low rates of choice-making, advocacy and political participation amongst this population. Two factors of choice were explored: key life choice and everyday choice. Some commonalities were identified between the two factors, yet key differences were also noted. Type of residence was the strongest predictor of key life choice yet not significant in everyday choice, while the reverse was true for functioning in activities of daily living. Other factors were also significant in determining choice, including level of ID, contact with family, functional limitation, literacy, age, having friends and respondent type.Low rates of participation reported here impinge on the rights of older adults with ID under the principles of the UN CRPD. Choice-making emerged as a multi-factorial phenomenon, with different factors important depending on the type of choice involved. This encourages a nuanced and personalised response from policy and support services to overcome individual challenges to participation as equal citizens. The significance of respondent type also highlights the difficulty of including self-report, supported and proxy participants in ID research.

The study of measurements of quality of life (QoL) is one of the great challenges of modern psychology and psychometric approaches. This issue has greater importance when examining QoL in populations that were historically treated on the basis of their deficiency, and recently, the focus has shifted to what each person values and desires in their life, as in cases of people with intellectual disability (ID). Many studies of QoL scales applied in this area have attempted to improve the validity and reliability of their components by incorporating various sources of information to achieve consistency in the data obtained. The adaptation of the Personal Outcomes Scale (POS) in Spanish has shown excellent psychometric attributes, and its administration has three sources of information: self-assessment, practitioner and family. The study of possible congruence or incongruence of observed distributions of each item between sources is therefore essential to ensure a correct interpretation of the measure. The aim of this paper was to analyse the observed distribution of items and dimensions from the three Spanish POS information sources cited earlier, using the item response theory.We studied a sample of 529 people with ID and their respective practitioners and family member, and in each case, we analysed items and factors using Samejima's model of polytomic ordinal scales.The results indicated an important number of items with differential effects regarding sources, and in some cases, they indicated significant differences in the distribution of items, factors and sources of information.As a result of this analysis, we must affirm that the administration of the POS, considering three sources of information, was adequate overall, but a correct interpretation of the results requires that it obtain much more information to consider, as well as some specific items in specific dimensions. The overall ratings, if these comments are considered, could result in bias.

The basic human right of autonomy is underpinned by the ability to practice decision-making. The rights of people with disabilities to engage in autonomous decision-making are promoted as best practice and includes decisions around health and self-care. Little is known about autonomy in the field of long-term condition management. This paper explores how people with intellectual disabilities (ID) and their support workers experience and practice autonomy in relation to the management of diabetes.Semi-structured interviews were completed in residential and independent living settings with people living with an ID and type 1 (N = 8) or type 2 (N = 6) diabetes and their support workers (N = 17). The participant with ID's support worker was present as requested; however, the interviews were run separately with each participant rather than jointly. Thematic analysis was undertaken, and a constructivist lens informed both data collection and analysis.The analysis revealed a strong process of negotiated autonomy between people with ID and their support workers in relation to the daily management of diabetes. During times of transition, roles in relation to diabetes management were renegotiated, and the promotion of autonomy was prefaced within the context of risk and client safety. Goals to increase independence were drivers for negotiating greater autonomy.The successful negotiation of autonomy in relation to diabetes illustrates the potential for people with ID to play a key role in the management of long-term health conditions. The study highlights the primacy of developing decision-making skills among people with ID. Promoting opportunities for decision-making and an ethos of supported decision-making through person-centred planning are all vital in working towards enhancing autonomy.

For most people, choice making is an everyday occurrence, but for adults with an intellectual disability (ID), such opportunities are often limited, if not, absent. Defining choice, and related opportunity capacity and supports continue to feature prominently in academic, practice and policy discourse within the field of ID as reflected in the range of measures available. This paper examines the factor analytic properties of an adapted 14-item choice inventory scale.Presence and type of choice were recorded in wave 1 of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing using a choice inventory scale adapted for the Irish context for 753 participants with ID over age 40 years. Analysis included both an exploratory and confirmatory factor analysis. Descriptive statistics on choice by type of living arrangement, type of interview (proxy, self or supported) and level of ID are presented.Exploratory factor analysis indicates good model fit when using both a 3-item and 4-item response with the 4-item version suggesting a two-factor model. Further exploration of this two-factor model through confirmatory factor analysis highlighted an improved fit for the 4-item model. Further improvement in model fit is found when four item pairs are co-varied within the model.Two broad types of choice were found to exist for adults with ID - everyday decisions and key life decisions. In addition, the factor analysis support for the inclusion of a 'no choice' response may help reduce the potential for missing data.

Reliable ascertainment of intellectual disability (ID) is important to identify those with special needs, in order for those needs to be met in the criminal justice system. Although the Hayes Ability Screening Index (HASI) is valid and widely used for the identification of possible ID, the risk of inter-rater bias between researchers when scoring the HASI has not yet been established. The current paper estimates the inter-rater reliability of the HASI in a sample of Indigenous and non-Indigenous prisoners in Western Australia.We estimated intra-class correlation coefficients (ICC) for the consistency of agreement among three blinded raters using a two-way random-effects model assessing the inter-rater agreement of the HASI. Kappa was also estimated for the dichotomous HASI screening threshold outcome between the raters.The HASI exhibited very good within-subject consistency of agreement for Section B (ICC = 0.95; 95%CI:0.94-0.96), Section C (ICC = 0.97; 95%CI: 0.96-0.98) and Section D (ICC = 0.90; 95%CI: 0.87-0.92) subscales and for the total scaled score (ICC = 0.97; 95%CI: 0.96-0.98). The inter-rater reliability of the dichotomous adult ID screening threshold (85) was also very good (Kappa = 0.95).The current study provides new evidence that the HASI has a low risk of bias from between-rater scoring and can be reliably scored by both non-clinicians and clinicians with little training, when administered in prison settings. Pre-scoring training should focus on the more subjective 'clock-drawing' section, in order to maximise inter-rater reliability.

Improving staff performance is an issue in services for people with intellectual disability. Practice leadership, where the front line leader of a staff team focuses on service user outcomes in everything they do and provides coaching, modeling, supervision and organisation to the team, has been identified as important in improving staff performance. To date this finding is based only on self-report measures.This paper describes and tests an observational measure of practice leadership based on an interview with the front-line manager, a review of paperwork and observations in 58 disability services in Australia.The measure showed good internal consistency and acceptable inter-rater reliability. Practice leadership was associated with staff practice and outcomes for service users. The observed measure of practice leadership appears to be a useful tool for assessing whether leadership within a service promotes enabling and empowering support by staff. It was found to discriminate higher and lower performing services in terms of active support.The measure had good reliability and validity although some further testing is required to give a complete picture of the possible uses and reliability of the measure. The measure is potentially useful in contexts of both research and service development. The confirmation of previous findings from self-report measures that practice leadership is related to the quality of staff practice and outcomes for service users has implications for policy and practice in terms of the training of managers and structures for organisational management.

Moving from family-centred to child-centred models of service delivery can be stressful for parents as their young children with developmental delays and disabilities transition into school. The purpose of this paper was to explore and compare predictors of both distress and well-being in parents during this transition period.A sample of 155 mothers of 113 boys and 42 girls participated in the study. The mean age of the children was 4.9 years and their diagnoses included autism spectrum disorder (52%); unspecified intellectual disability/developmental delay (26%); Down syndrome (12%); other genetic conditions (4%) and other diagnoses (6%). Participants completed surveys primarily online focusing on child characteristics, family resources, parent coping strategies, parental distress and positive gain.Multiple regression analyses were conducted to determine predictors of parent reported distress and positive gain. Parent coping variables were the strongest predictors of both positive gain and parental distress, with reframing emerging as a predictor of positive gain and parent empowerment emerging as a predictor of both greater positive gain and lower parental distress.The results of this study highlight not only the importance of including positive as well as negative outcomes in research with parents but also the importance of including parent characteristics such as coping strategies (e.g. reframing and empowerment/self-efficacy) as potential predictors of outcome in such studies.

This paper examines knowledge exchange dynamics in a specialist integrated intellectual (learning) disability service, comprising specialist healthcare provision with social care commissioning and management, and considers their significance in terms of integrated service delivery.A qualitative study focusing on knowledge exchange and integrated services. Semi-structured interviews (n = 25) were conducted with members of an integrated intellectual disability service in England regarding their perceptions of knowledge exchange within the service and the way in which knowledge exchange impinges on the operation of the integrated service.Exchange of 'explicit' (codifiable) knowledge between health and care management components of the service is problematic because of a lack of integrated clinical governance and related factors such as IT and care record systems and office arrangements. Team meetings and workplace interactions allowed for informal exchange of explicit and 'tacit' (non-codifiable) knowledge, but presented challenges in terms of knowledge exchange completeness and sustainability.Knowledge exchange processes play an important role in the functioning of integrated services incorporating health and care management components. Managers need to ensure that knowledge exchange processes facilitate both explicit and tacit knowledge exchange and do not rely excessively on informal, 'ad hoc' interactions. Research on integrated services should take account of micro-scale knowledge exchange dynamics and relationships between social dynamics and physical factors.

Previous studies have reported that obese people with trisomy 21 suffer from low-grade systemic inflammation. A recent study has found that aerobic training reduced inflammation in obese women with Down syndrome. To the best of our knowledge, the study reported in this paper is the first to determine for how long these effects were maintained after completion of the programme.Twenty premenopausal obese women (18-30 years old) with Down syndrome volunteered for this study. Eleven were randomly assigned to the intervention group and performed a 10-week aerobic training programme, 3 sessions per week, consisting of warming-up followed by treadmill exercise (30-40 min) at a work intensity of 55-65% of peak heart rate and a cooling-down period. The control group included 9, age, sex and BMI matched women with Down syndrome that did not perform any training programme. Fat mass percentage and distribution were measured. Plasma level of IL-6 and high-sensitive C-reactive protein (hs-CRP) were monitored. Time-course changes for these outcomes were assessed at pre- and post-intervention. Further, they were re-evaluated at 1, 3 and 6 months after completion of the programme.Three months after completion of the programme, plasma levels of IL-6 and hs-CRP were significantly increased. Up to 6 months later, both fat mass percentage and waist circumference (WC) were significantly increased. Furthermore, physical fitness was also impaired in the intervention group. No changes were observed in the control group.A 3-month detraining period significantly impaired chronic inflammation in obese women with DS.

Mindfulness-based interventions have been shown to be effective in the treatment of a range of health and psychological disorders in adults and young people without intellectual disabilities (ID). Clinical studies are emerging reporting on the efficacy of mindfulness-based interventions as a stand-alone treatment for common clinical disorders in adults with ID.This paper aims to evaluate the efficacy of an innovative structured mindfulness-based cognitive therapy (MBCT) group programme adapted for adults with ID with a diagnosis of either recurrent depression, anxiety or both clinical conditions and a history of deliberate self-harm behaviour. Two groups ran consecutively consisting of a total of fifteen participants and seven carers. All participants were recorded as having either a borderline, mild, or moderate ID. The group programme ran over a period of 9 weeks with a follow-up session at 6 weeks post group intervention. Outcome measures included the Hospital Anxiety and Depression Scale and two sub-scales from the Self-Compassion Scale administered at baseline, post therapy and at 6-week follow-up.The evaluation showed that participants reported an improvement in their experience of depression, anxiety, self-compassion and compassion for others. The most significant impact was in the reduced levels of anxiety reported. Improvements across all outcomes were maintained at 6-week follow-up.The results of the evaluation suggest that people with intellectual disabilities benefit from a structured MBCT group intervention and the results are maintained at 6-week follow-up.

The improvement of engagement and involvement in communicative and socially centred exchanges for individuals with multiple and severe disability (MSD) presents complex and urgent challenges to educators. This paper reports the findings of an intervention study designed to enhance the interactive skills of students with MSD using an in-class mentor model of staff development to improve the skills and strategies of their communication partners in two distinct educational settings.Observational data were collected on eight students with MSD and their 16 teachers and teachers' aides (paraprofessionals), using a multiple baseline across students design, replicated across special and general school setting types.Results indicated variable improvements in student alertness and increased communicative interactions. In some cases significant differences in communicative involvement and awake-active-alert activity were observed.These findings underline the complexity of variables involved in delivering educational and communicative interventions for staff working with this population. Implications for further research and application to daily practices in classrooms are discussed.

Article 29 of the Convention on the Rights of Persons with Disabilities guarantees equality of political rights, including the right to vote and stand for election. The affirmation of these rights, first guaranteed by the Universal Declaration of Human Rights, raises an important question given the long-standing association between political rights and beliefs concerning the abilities of citizens to reason and act independently: how and to what degree can people identified as having intellectual disabilities participate in a defining act of the democratic process? Focused specifically on the right to vote, this paper addresses the question by (1) introducing the debates that have surrounded the voting rights of this population; and (2) reporting on recent attempts in Kenya, and in England and Wales, to promote voting by people with intellectual disabilities. It concludes by considering the effectiveness of the different approaches these countries have adopted.

People with intellectual disability (ID) experience health inequity compared with the general population, a key contributing factor being disparities in social determinants of health. The enactment of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) provides a platform for the progression and promotion of health and other interconnected rights to address barriers to the highest attainable standard of health for this populace. Rights can be brought to life through advocacy efforts. This paper explores the meaning, perceptions and experiences of advocacy by family members and paid support workers of adults with ID and locates the findings within a health and human rights discourse.As part of a larger randomised controlled trial, 113 parents and 84 support workers of adults with ID completed a telephone interview that included open-ended questions about their understanding and experiences of advocacy. Thematic analysis was used to identify relevant themes.Five key themes were identified. The first underscored how advocacy to 'speak up' for the person with ID is integral to both parent and support worker roles. The second and third themes considered the contexts for advocacy efforts. Access to quality health care was a core concern, along with advocacy across other areas and sectors to address the person's wider psychosocial needs. The remaining themes highlighted the many dimensions to advocacy, including differences between parent and support worker views, with parental advocacy being an expression of 'caring' and support workers motivated by a 'duty of care' to protect the individual's 'rights'.Parent and support worker advocacy provides one means to address the social determinants of health and fulfilment of health rights of and for people with ID. Policy and practice in the context of governmental obligation under the CRPD should support advocacy and make health rights the reality not rhetoric for this group of men and women.

Over the past two decades, disability activists and scholars have developed research paradigms that aim to place (some of the) control over the research process in the hands of disabled people. This paper discusses the appropriateness of applying such paradigms to sex offenders with intellectual disabilities (ID). It exposes to what extent current research about this population is affected by these developments.A content analysis of a sample of 80 articles across 20 academic journals was carried out. This recorded the data collection methods used, to what extent the views of people with ID were represented, subject affiliations of the authors and the subject matter discussed.Few studies make sense of the personal accounts of this population. Social scientists have mostly not engaged in this area of research, which results in significant gaps in knowledge.We currently know little about the subjectivity of sex offenders with ID. Research that seeks to explore this may enhance our understanding of this population and thus contribute towards the effectiveness of preventative work and risk management.

People with intellectual disabilities have poorer health than their non-disabled peers. They are also more likely to be exposed to a wide range of environmental adversities in childhood. Research undertaken in the general population has demonstrated that exposure to environmental adversity in childhood can have an adverse impact on health and well-being across the life course. Recently, research in this area has added new breadth and depth to our understanding of: (1) the extent to which cumulative exposure to environmental adversities across the life course, but especially in early childhood, can reduce health and well-being; (2) the social, psychological and biological mediating pathways through which environmental adversities may impair health; (3) the processes associated with resilience and vulnerability in the face of exposure to adversity; and (4) the social significance of these effects in accounting for the magnitude of the inequalities in health that are apparent both between and within populations. This new knowledge is making a significant contribution to the development of social policies that seek to combine health gain with the reduction in health inequalities. This paper attempts to apply this knowledge to research aimed at understanding and improving the health and well-being of people with intellectual disabilities.

Cortisol is a marker of physiological arousal, exhibiting a characteristic pattern of diurnal activity. The daily cortisol profile has been xamined extensively and is atypical in a number of clinical disorders. However, there are very few studies focussing on the cortisol profile in adults with intellectual disabilities (ID). This paper reports a preliminary investigation into the nature of the cortisol profile in adults with mild or moderate ID and provides reflections on the challenges of psychophysiological research in this population.On two consecutive days, 39 adults with mild or moderate ID each donated saliva samples for cortisol analysis, at multiple times between waking and evening. A comparison between these data and the published literature permitted a descriptive assessment of the cortisol awakening response (CAR) and diurnal profile. A variety of psychometric measures and an assessment of behavioural history were also collected in order to describe aspects of the participants' emotional and behavioural states.Individuals with ID exhibit a diurnal cortisol secretion profile, qualitatively similar to that of the typical, healthy, adult population. However, the findings also suggested a blunted CAR, warranting further investigation. There was also some evidence that cortisol secretion was affected by anxiety and a recent history of aggression.While further work is required to characterise the CAR fully, there was no indication that the diurnal cortisol profile among people with ID differs from that of the typical population. This study also demonstrates that, although challenging, it is feasible, and acceptable to participants, to collect repeated physiological measures from men and women with mild and moderate ID.

Beliefs about the controllability of behaviour have been consistently shown to be important in understanding the responses of carers to the challenging behaviour of people with intellectual disabilities (IDs). This paper reports the reliability and validity of the controllability beliefs scale (CBS), a 15-item measure of beliefs regarding the controllability of challenging behaviour when used with carers of people with IDs.Two hundred and sixty-four carers of people with IDs completed the CBS, 74 people also completed the modified attributional style questionnaire and the self-injury behavioural understanding questionnaire scale to determine concurrent and convergent validity and 34 people completed the scale twice within a 2- to 4-week period to determine test-retest reliability.The scale has a two-factor structure and has adequate internal reliable. The scale is significantly correlated with the controllability, internality and stability items from the Modified Attributional Style Questionnaire, showed expected associations with behavioural and internal emotional understanding items from the self-injury behavioural understanding questionnaire. The scale has good test-retest reliability.The data support use of the CBS in clinical practice and research to assess carers' beliefs regarding challenging behaviour of people with IDs.

Intellectual and developmental disability (IDD) researchers have been relatively slow to adopt the search for moderators and mediators, although these variables are key in understanding how and why relationships exist between variables. Although the traditional method of causal steps is useful for describing and understanding moderators and mediators, it is not sufficient for statistical analysis.The theoretical and statistical processes of evaluating moderators and mediators are explained in terms familiar to IDD psychologists, using examples from IDD literature. Moderator and mediator analyses in five leading IDD journals are assessed for patterns of usage.Although the number of publications in the past decade exceeds previous years, the field is still behind others in both the quantity and quality of the use of moderators and mediators.The field as a whole will advance if the recent theoretical and technical advances outlined in this paper are employed.

Present day service systems evolved from the traditional model of disability intervention where the child with the disability and the family were viewed as pathological entities that needed to be fixed rather than supported. Scholars have increasingly called for a greater focus on the family in service delivery, but few studies have empirically examined the practical reality of such a shift. The present paper examines the disability-related formal service supports within the family quality of life (FQOL) framework in a sample of predominantly low-income, minority families in the USA.Cross-sectional data collected from a convenience sample of 149 families using the Family Quality of Life Survey (FQOLS-2006) was analysed at the univariate, bivariate and multivariate levels.Over half of the families indicated that they needed more help from the service system, and the largest barrier to accessing services was a lack of information. Almost all families viewed service support as very important to their overall FQOL; however, only half of them were satisfied with the formal support that they were receiving. Less than half of the families reported having many service support opportunities and high attainment of service support, although most took high initiative in pursuing formal supports. The path model illustrated the complex inter-relationships between the six dimensions of service support.Findings underscore the need for resources to empower families and the value of using the FQOLS-2006 to ascertain the service support needs and strengths of families.

There is substantial literature investigating quality of life (QoL) of individuals with intellectual disability (ID). QoL of families of people with ID is emerging as an important field of research. Despite this, there is a lack of studies regarding their relationship.The present paper aimed to study the relationship between QoL scores of individuals with ID and members of their families.Twenty-seven parents or relatives of 27 adults with ID were recruited by four different research centres across Tuscany (Italy) to be interviewed through the Italian adaptation of the Family Quality of Life Survey - 2006 (FQoLS-2006), a tool developed for use in a multiple-country study on family QoL. The FQoLS-2006 was translated and adapted to Italian through three revisions. The last was submitted to the authors of the original version, who also maintain an electronic data file and data archive for statistical evaluations in various countries. QoL of persons with ID was assessed through the administration of the Quality of Life - Instrument Package. QoL scores were analysed to describe population characteristics and to examine the relationships among measures of individual and family QoL using correlations (Pearson and Spearman).Findings showed that family ratings of QoL were generally low. Families interviewed reported a low level of QoL in 'Support from Others' and 'Community Interaction', while 'Family Relationships' and 'Health of the Family' rated higher. For individual QoL, individuals had the lowest scores in the area of 'Spiritual being' and higher scores in the area of 'Physical being'. Correlations examining possible relationships among Importance, Satisfaction and Opportunities found some statistically significant correlation coefficients between some aspects of the three main areas of individual QoL (Being, Belonging and Becoming) and the nine family domains. Most of these correlations regarded family 'Financial Well-Being', 'Family Relationships, 'Support from Service' and 'Support from Others' areas.The results of this study suggest that QoL is perceived somewhat differently by individuals with ID and by members of their families. This difference could negatively impact QoL of people with ID, if their views are not taken into account when planning for family support. The relationships between individual and family QoL appear to be quite complex, and such complexity needs to be clarified in future research.

This paper seeks to examine a number of issues which relate to the provision of appropriate and high-quality residential and community care for people with an intellectual disability. A number of key themes emerging from this Special Issue of the Journal of Intellectual Disability Research are identified and explored: (1) normalisation; (2) inclusion; (3) choice; and (4) regulation. It is concluded that the research community has an obligation to assume a higher profile at a time when the quality of life of people with an intellectual disability and their families is under threat. This can be done in a number of ways through: (1) the establishment of demonstration projects, either independently or in association with the voluntary and statutory sector, to explore innovative and practical approaches of enhancing the quality of services offered to people with an intellectual disability; (2) looking at ways of improving the quality of training programmes for care staff by moving away from current approaches that emphasise narrow instrumental competencies to strategies that develop essential expressive and relational aspects of care practice; and (3) offering a more considered and rigorous critique of current professional practice and assuming a leadership role at a time when leadership in this field is lacking.

This study examined the potential of a retrospective video reviewing process [Burford Reviewing Process (BRP)] for enabling people with intellectual disabilities to describe their experiences of cognitive behaviour therapy (CBT). It is the first time that the BRP, described in this paper, has been used with people with intellectual disabilities and the aim was to assess the feasibility of the procedure and gain a picture of the information it might yield.Using the BRP, 12 clients reviewed tapes of their fourth and ninth CBT sessions and six reviewed the fourth session only. All reviews were audio recorded for later verbatim transcriptions of clients' comments. Reviews and transcriptions were conducted by non-clinical researchers. Thematic analysis was applied to the transcripts by a researcher who was not CBT-trained.All clients were able to follow the instructions for the BRP. Three broadly based themes encapsulated their responses - how they felt about themselves, how they felt the therapist was helping and how CBT was helping. A fourth theme referred to comments on issues that were currently troubling clients, which were prompted by watching the video but did not refer to actual events on screen.The BRP seems a feasible approach with this client group and gave insights into their feelings and opinions on CBT. Clinical implications of the results and the potential for further developments are discussed.

Social integration of people with intellectual disability (ID) moving into regular neighbourhoods tends to be studied and evaluated without detailed knowledge about the social psychological aspects of everyday interaction between neighbours with and without ID. The goal of the present paper is to show how the authors' social psychological research programme may contribute to this field of inquiry.The different ways in which societies respond to features and behaviours that may be perceived as deviant are theoretically analysed. Results of empirical studies are reported to clarify how social responses to people with ID are special in terms of perceptions, emotions and interaction desires of people with and without ID during a pre-contact and contact phase.On the basis of the theoretical analysis, it is concluded that regular neighbouring in modern Western society often takes the form of benevolent tolerance, rather than stigmatisation and prejudice. However, empirical studies reveal that, prior to getting people with ID as new neighbours, prospective neighbours without ID experience a specific pattern of emotions that are associated with specific desires (e.g. with respect to information supply or a caring relationship). These anticipatory reactions are dependent on the expected size of the group moving in and on the severity of ID. Furthermore, while actually engaging in neighbouring, neighbours with and without ID appear to have experiences related to behaviour of residents, staff and features of housing facilities that are perceived as (in)congruent with regular neighbouring.It is concluded that interpersonal relationships between neighbours with and without ID should not be simplified in terms of attitudes that would be primarily prejudiced/stigmatising versus entirely accepting. Rather, our studies paint a more complex picture of sometimes ambivalent thoughts, feelings and interaction needs that all should be taken into account to make social integration a success.

Diagnostics and care for people with intellectual disabilities (ID) and psychiatric disorders need to be improved. This can be done by using assessment instruments to routinely measure the nature and severity of psychiatric symptoms. Up until now, in the Netherlands, assessment measures are seldom used in the psychiatric care for this population. The objective of the present paper is to evaluate the use of the Brief Symptom Inventory (BSI), a widely used standardised questionnaire in general psychiatry, in a well-defined sample of people with borderline intellectual functioning or mild ID diagnosed with one or more psychiatric disorders.A total of 224 psychiatric outpatients with either borderline intellectual functioning or mild ID participated in this study. All participants were new patients of Kristal, Centre for Psychiatry and Intellectual Disability in the Netherlands, in the period between 1 April 2008 and 1 October 2009. All participants were assessed by a multidisciplinary team, including a certified psychiatrist. Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) criteria were applied. The mean total intelligence quotient was measured with the Wechsler Adult Intelligence Scale (WAIS-III). The BSI was administered in an assisted fashion. Utility and psychometric properties of the BSI were investigated. Internal consistency coefficients (Cronbach's alphas) were computed. Bivariate correlations between the sub-scales were computed to assess differentiation between the scales. Mean sub-scale scores were compared between different DSM-IV-TR subgroups to investigate the discriminant abilities of the scales. A confirmatory factor analysis was conducted.The results suggest that the BSI is practically useful. Internal consistencies ranged from 0.70 to 0.96 and thus are considered good to adequate. Sub-scale inter-correlations showed there is a degree of differentiation between the sub-scales. Discriminant validity was shown for the sub-scales depression, anxiety and phobic anxiety. Confirmatory factor analysis showed that the underlying structure of the BSI could be described by the same nine-factor model as reported in previous studies.As a result of the psychometric properties illustrated, this study supports the use of the BSI as a screener for psychopathology and a general outcome measure in people with ID.

In the field of intellectual disabilities (ID), the quality of life concept has been developing rapidly in Chinese societies including Hong Kong, mainland China and Taiwan. However, there is a lack of locally validated instruments to measure the quality of life of people with ID. The study reported in this paper attempted to validate the Chinese Quality of Life Questionnaire - Intellectual Disabilities adapted from the Quality of Life Questionnaire developed by SchalockKeith.People with mild/moderate ID aged 15 years or above were recruited from special schools, skills centres, community service units and residential units in different regions of Hong Kong. A number of procedures were followed including reliability tests, factor analysis, content validity and construct validity.A total of 359 participants were recruited for the study. Factor analysis was conducted according to the rotated component matrix method, in which 23 items were extracted from the original 40-item version of the Quality of Life Questionnaire and three domains (renamed satisfaction, competence and daily choice making/interpersonal relations) were observed. The items in each domain were shown to have factor loadings ranging from 0.42 to 0.90. Construct validity tests indicated the positive nature of the relationship between earnings, and that self-determination and social interaction increase with more independent living environments and less segregated work environments achieving higher scores (P0.000, P0.01 and P0.05 respectively). The scale also achieved a good degree of reliability (Cronbach's α=0.79).Initial validity tests indicated that the Chinese Quality of Life Questionnaire - Intellectual Disabilities may be a useful instrument for measuring the quality of life of Chinese people with ID. Cultural issues are discussed and recommendations for future research and service development are made.

The Taiwanese government launched a new programme in November 2004 to support adults with intellectual disabilities living in smaller facilities. This paper aims to evaluate the service outcomes of this new residential scheme over 2 years including those residents who moved from an institution and those who moved from their family.A one-group repeated-measures analysis was conducted for five interviews after the adults with intellectual disabilities entered the new environment. Forty-nine adults were initially studied (T1) and 29 adults remained in the homes until the end of the study (T5).This study found significant improvements over the 2 years in the residents' quality of life and family contact. The results also highlight a decrease in maladaptive behaviour among the residents moving from institution and an increase in choice making and family contact among the residents moving from family. No significant changes in adaptive behaviour and community inclusion were found.Results revealed that further policy changes and financial support including service quality assurance are required in order to improve service outcomes for adults living in the new residential scheme.

This paper reports on some of the findings of a large-scale survey (n = 852) of family members and support staff of adults with intellectual disabilities receiving community living services in British Columbia, Canada, concentrating on comparison of outcomes across four types of community residential settings: group homes, family model homes, independent home or apartment, and family home.Comparisons were conducted on six domains: information and planning; access to and delivery of supports; choice and control; community connections; satisfaction; and, overall perception of outcomes. Where applicable, further multivariate analyses were undertaken to determine the effect of the degree of help required by the residents and the respondent type.Findings indicate that on all measures other than choice and control, group homes and family model homes showed better outcomes than either independent settings or family homes.The findings may indicate that the move to more independent living settings is not being accompanied by appropriate supports.

The association between poverty and intellectual disability (ID) has been well documented. However, little is known about persons with ID who face circumstances of extreme poverty, such as homelessness. This paper describes the situation of persons with ID who were or are homeless in Montreal and are currently receiving services from a team dedicated to homeless persons.(1) To describe the characteristics, history and current situation of these persons; and (2) to report within-group differences as a function of gender and current residential status.The data were collected from files using an anonymous chart summary. Descriptive statistics on the whole sample (n = 68) and inferential statistics on cross-tabulations by gender and residential status were performed.Persons with ID exhibited several related problems. Some of these persons, primarily women, experienced relatively short periods of homelessness and their situations stabilised once they were identified and followed up. Other persons with ID experienced chronic homelessness that appeared to parallel the number and severity of their other problems. When compared with a previous epidemiological study of the homeless in Montreal, the population of homeless persons with ID differed from the overall homeless population in a number of respects.The results suggest prevention and intervention targets. The need for epidemiological research appears particularly clear in light of the fact that below-average intellectual functioning has been identified as a risk factor for homelessness and a predisposing factor for vulnerability among street people.

This paper describes the development of an Attitudes to Disability Scale for use with adults with physical or intellectual disabilities (ID). The aim of the research was to design a scale that could be used to assess the personal attitudes of individuals with either physical or ID.The measure was derived following standard WHOQOL methodology as part of an international trial. In the pilot phase of the study, 12 centres from around the world carried out focus groups with people with physical disabilities, people with ID, with their carers, and with relevant professionals in order to identify themes relevant for attitudes to disability. Items generated from the focus groups were then tested in a pilot study with 1400 respondents from 15 different centres worldwide, with items being tested and reduced using both classical and modern psychometric methods. A field trial study was then carried out with 3772 respondents, again with the use of both classical and modern psychometric methods.The outcome of the second round of data collection and analysis is a 16-item scale that can be used for assessment of attitudes to disability in physically or intellectually disabled people and in healthy respondents.The Attitudes to Disability Scale is a new psychometrically sound scale that can be used to assess attitudes in both physically and intellectually disabled groups. The scale is also available in both personal and general forms and in a number of different language versions.

This paper argues that we are at a point of change in ID services, that new ideas and different frames of reference are required to take services forward in the 21st century. We describe how contemporary thinking in architecture, philosophy and organisational theory can assist in generating service principles for specialist services that allow us to better address the continuing isolation that is the experience of many people with ID, and the moral judgements that can limit service possibilities. We do not seek to offer a rigid blueprint for any particular service but one that allows for agency from its participants and relationships between them.