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Background Advances in theoretical frameworks of self-determination require the development of new assessment instruments. This study examines the dimensional structure of a self-determination scale and analyses the factorial invariance of its measurement across age and gender. Method The AUTODDIS Scale was used to assess the self-determination of 541 people with intellectual disabilities aged from 11 to 40. Results Different models (correlational and hierarchical structures) of the scale were tested. The correlational model obtained from the exploratory structural equation model approach provided the best fit for the data. The results also supported measurement invariance across youths (aged 11 to 21 years) and adults (aged 21 to 40 years) and across genders. Conclusions This study contributes to international research on self-determination and the development of assessment tools in this field, offering a better understanding of this multifaceted and complex construct. The results provide construct validity evidence regarding a new measurement tool tested across people aged 11 to 40, using information from third parties. However, further research is needed to explore the best ways to understand and assess the different factors related to self-determination.

Background Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID). Method Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33). Results For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP. Conclusions Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.

BackgroundDirect support professionals play an important role in facilitating physical activity support for people with intellectual disabilities (ID). This study examined how the characteristics of people with ID and the characteristics of direct support professionals are related to the professionals' behaviour when supporting people with ID in physical activity.MethodsA cross‐sectional approach was used. Direct support professionals (n = 217) who support people with ID completed a self‐report questionnaire, which aimed to measure the components that produced behaviour when providing physical activity support for people with ID. Associations with the characteristics of people with ID and the characteristics of the professionals were analysed using multivariate linear regression models.ResultsThe results demonstrate that the professionals' characteristics – such as age, workplace and training – were related to the variance in the components that theoretically produced the direct support professionals' behaviour. The characteristics of the people with ID did not contribute to the variance in the direct support professionals' behaviour.ConclusionsThe findings suggest that professional characteristics are the dominant reasons for the differences observed in the capability, opportunity and motivation of direct support professionals to provide physical activity support. This study also underscores the need for integrated training programmes to help direct support professionals promote physical activity in people with ID.

BackgroundThe annual health check (AHC) programme, as part of a Directed Enhanced Service, offers an incentive to general practitioners in England to conduct health checks for people with intellectual disabilities (IDs). The aim of this analysis was to estimate the impact on health care costs of AHCs in primary care to the National Health Service in England by comparing adults with ID who did or did not have AHCs using data obtained from The Health Improvement Network.MethodsTwo hundred eight records of people with ID from The Health Improvement Network database were analysed. Baseline health care resource use was captured at the time the first AHC was recorded (i.e. index date), or the earliest date after 1 April 2008 for those without an AHC. We examined the volume of resource use and associated costs that occurred at the time AHCs were performed, as well as before and after the index date. We then estimated the impact of AHCs on health care costs.ResultsThe average cost of AHC was estimated at £142.57 (95%CI £135.41 to £149.74). Primary, community and secondary health care costs increased significantly after the index date in the no AHC group owing to higher increase in resource utilisation. Regression analysis showed that the expected health care cost for those who have an AHC is 56% higher than for those who did not have an AHC. Age and gender were also associated with increase in expected health care cost.ConclusionThe level of resource utilisation increased in both (AHC and no AHC) groups after the index date. Although the level of resource use before index date was lower in the no AHC group, it increased after the index date up to almost reaching the level of resource utilisation in the AHC group. Further research is needed to explore if the AHCs are effective in reducing health inequalities.

Background Prejudices and negative attitudes towards intellectual disabilities (IDs) may hinder social inclusion of ID individuals, limiting their well-being. This study investigated the psychometric characteristics of the Italian Modern and Classical Prejudices Scale (MCPS-IT) towards people with ID and the effects of gender, age and socio-economic status (SES) on prejudices. Method The MCPS-IT was administered to 474 adults (69% women, age range 18-70 years, M = 33.13) in conjunction with a questionnaire evaluating socio-demographic information (SES), the contact and the education about ID people and the social dominance orientation. Results Results confirmed that Italian MCPS has a two-factor structure that measures in a reliable and valid way prejudice towards people with ID. Multivariate analyses of variance confirmed a weak gender difference in both scales and age differences in modern scale. No SES differences were found. Conclusion The Italian MCPS represents a valid scale that can be used to monitor the social context of people with ID.

Background Support staff of adults with intellectual disability (ID) play an important role in promoting independence in home and community settings. However, little is known about the types of behaviours staff should use to promote independence and instruments that assess such behaviour do not yet exist. The aim of this study was therefore to develop and initially validate a reliable questionnaire that measures the degree to which support staff display behaviours that promote independence in people with ID. Method The Leiden Independence Questionnaire for Support Staff (LIQSS) was constructed to measure the extent to which support staff promote independence in people with ID. The LIQSS was completed by 142 staff members working with people with ID. For the psychometric evaluation of the LIQSS, a principal component analysis was performed with an oblique rotation in all items. Next, the principal component analysis was performed with a forced three‐component extraction, and three sub‐scales were computed. To assess internal consistency, Cronbach's α was calculated for each of the sub‐scales. Results The LIQSS was found to consist of three internally consistent (Cronbach's α was respectively 0.92, 0.79 and 0.76) and meaningful components: (1) communication, agreements and coordination; (2) positive encouragement and tailoring; and (3) supporting independent performance. The final 22 items had factor loadings between 0.44 and 0.91 on their corresponding component and a minimal difference in loading to the other factors of 0.20. Conclusions The LIQSS appears to be an instrument with positive face validity and reliability (internal consistency) that assesses the degree to which support staff promote independence in people with ID. To increase the instrument's value for both scientific research and clinical practice, studies should focus on the further validation of the LIQSS.

Background Little is known about the population prevalence of co-occurring intellectual disabilities and autism, and its impact on general health status. The study aimed to investigate this, in comparison with the general population. Method Whole country data from Scotland's Census, 2011, were analysed. Descriptive statistics were generated; chi-squared tests were undertaken; and logistic regressions were undertaken both with the whole general population data, adjusted for age and gender, and within the population with co-occurring intellectual disabilities and autism. Results A total of 5709/5 295 403 (1.08/1000) people had co-occurring intellectual disabilities and autism; 2.58/1000 children/young people and 0.74/1000 adults. The peak reported prevalence was at age 10 years (3.78/1000); 66.0% were male. Their general health status was substantially poorer than for the rest of the population, more so for children/young people, and they had more limitations in their day-to-day activities. Co-occurring intellectual disabilities and autism had odds ratio = 48.8 (45.0-53.0) in statistically predicting poor health. Conclusion This is the first study to report the population prevalence of coexisting intellectual disabilities and autism, and the substantial influence this double disadvantage has on general health status, apparent across the entire life course. This highlights a group in need of wider recognition for whom resources should be focused on and planned for, informed by evidence. Staff in services for people with either of these conditions need to be trained, equipped, resourced and prepared to address the challenge of working for people with this duality. This is essential, to address these substantial health inequalities.

Background: Physical health needs of people with intellectual disabilities are often overlooked. Inadequate physical health skills (assessment, monitoring) of healthcare professionals working in intellectual disabilities is a barrier to equitable care. Recent reports have called for initiatives to improve training through quality improvement programmes. Aim: An integrative review was undertaken to 1) identify physical health training needs of healthcare professionals 2) identify challenges of implementing quality improvement skills training. Methods: Six electronic databases were searched (January 1990-March 2015) and included if they described the physical health assessment/monitoring skills of healthcare professionals and quality improvement programmes designed to impact the physical health of adults with intellectual disabilities. Articles were appraised using the Mixed Methods Appraisal Tool (MMAT). Results: 668 articles were identified, of which 14 were included in the review. Literature was sparse with none reporting training needs of healthcare professionals in intellectual disabilities. Identified training needs of mainstream healthcare professionals included physical assessment, communication, general and syndrome specific knowledge, and health promotion. Quality improvement studies were of limited quality, under evaluated and poorly reported. Lack of staff engagement, role confusion and sustainability were barriers to quality improvement implementation. Conclusion: Physical health skills of healthcare professionals are key to improving care for people with intellectual disabilities. However, quality improvement is poorly implemented in this area of practice. In order to better meet the needs of this group better implementation and evaluation of intellectual disabilities quality improvement programmes is required.

Background Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve people with ID in community healthcare practice. To stimulate inclusion in mainstream healthcare services, this systematic review focussed on barriers in attitudes of mainstream health professionals towards people with ID. Method Five electronic databases were systematically searched and references in full text articles were checked for studies published in the English language between January 1994 and January 2016. A social–psychological triad of cognitive, affective and behavioural dimensions of stigmatising attitudes is used to structure and discuss the results. Results The literature search generated 2190 records with 30 studies that passed our exclusion criteria. Studies were mostly cross-sectional and of moderate quality. With respect to stigma, a lack of familiarity with and knowledge about people with ID was found. ID was considered as a stable condition not under personal control. Moreover, mainstream health professionals had either low or high expectations of the capabilities of people with ID. Professionals reported stress, lack of confidence, fear and anxiety, a tendency to treat people with ID differently and a lack of supporting autonomy. Conclusions Stigmatising attitudes towards people with ID appeared to be present among mainstream health professionals. This might affect the ongoing challenges regarding inclusion in mainstream healthcare services. To facilitate inclusion in mainstream healthcare services, it is recommended to include contact and collaboration with experts-by-experience in education programs of health professionals. Future research should progress beyond descriptive accounts of stigma towards exploring relationships between cognitive, affective and behavioural dimensions as pointers for intervention. Finally, inclusion would benefit from an understanding of ‘equal’ treatment that means reasonable adjustments instead of undifferentiated treatment.

Background The Improving Access to Psychological Therapies (IAPT) service was established to address common mental health problems among the English population in a timely manner in order to counter the social and economic disadvantage accompanying such difficulties. Using the concept of candidacy, we examined how the legitimacy of claims by people with intellectual disabilities to use this service is facilitated or impeded. Method We used a sequential mixed methods design. We completed 21 interviews with a range of stakeholders, including people with intellectual disabilities and their carers. Themes from the interviews were used to design an online survey questionnaire that was returned by 452 staff from IAPT and specialist intellectual disability services. Results Using the candidacy framework, we noted that eligibility and access to IAPT were achieved through dynamic and iterative processes of negotiation involving people with intellectual disabilities and their supporters on one side and IAPT staff and service structures on the other. Barriers and facilitators were apparent throughout the seven dimensions of candidacy (identification, navigation, permeability of services, appearances, adjudications, offers and resistance and operating conditions) and were linked to discourses relating to the character and purpose of IAPT and specialist intellectual disability services. Conclusions Opportunities exist for some people with intellectual disabilities to assert their candidacy for IAPT input, although there are barriers at individual, professional, organisational and structural levels. More attention needs to be paid to how principles of inclusiveness are operationalised within IAPT teams and to the mental health facilitation role of specialist intellectual disability staff.

Background Staff attitudes may affect choices available to persons with intellectual disabilities (ID). This study examined attitudes towards people with ID among staff working with people with ID in Japan and the United States. Method Attitudes of staff working with people with ID in Japan and the United States were compared using the Community Living Attitudes Scale, Intellectual Disabilities Form. Responses were examined via multivariate analysis of variance. Results In unadjusted analyses, Japanese staff exhibited a greater tendency towards Sheltering and Exclusion of people with ID and lower endorsement of Empowerment and Similarity of people with ID. After controlling for covariates, the country effect was no longer significant for Sheltering and Exclusion. Age and education were significantly associated with attitudes in the adjusted model. Conclusions While attitudes in Japan appeared less supportive of community inclusion of people with ID, some of the differences between countries were attributable to other staff characteristics such as age and education. Findings provide new information about how attitudes of staff in each country compare with each other.

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.

Background We hypothesised that a key factor determining the quality of active support was ‘practice leadership’ – provided by the first-line manager to focus staff attention and develop staff skills in providing direct support to enable people with intellectual disabilities to have a good quality of life. This exploratory study focused on what levels of practice leadership were found and its role in explaining variation in active support. Method Relevant aspects of management, including practice leadership, were assessed by questionnaires administered to staff in residential settings alongside observational measures of active support and resident engagement in meaningful activity. Relationships between these variables were explored using regression and post hoc group comparisons. Results There was wide variation, with average levels of practice leadership being low, though improving over the period studied. Practice leadership had a significant impact on active support, but was fully mediated by the effect of quality of management. When the quality of management was higher better practice leadership did produce a significant difference in active support. However, higher quality of management on its own did not produce better active support. Conclusions A number of limitations are acknowledged and further research is required. Practice leadership appears to be an important factor in enabling staff to provide active support but as part of generally good management. Given the rather low levels found, attention needs to be given to the training, career development and support of practice leaders and also to how to protect their time from their many other responsibilities.

Background: The aim of this article was to describe how caregivers and relatives shape respect for autonomy in the end-of-life care for people with intellectual disabilities (ID) and to discuss to what extent this corresponds with a relational concept of autonomy, such as described in care ethics. Methods: This study consisted of a qualitative design in which the cases of 12 recently deceased people with ID were reconstructed by interviewing the caregivers and relatives who were closest to the person at the end of their life. A cyclic process of data collection and analysis was used. Interviews were transcribed verbatim and data were analysed inductively. Results: Respect for autonomy in the end-of-life care of people with ID was mainly reflected in helping the person with ID familiarise with three transitions: new information on the diagnosis and prognosis, changing care needs and wishes, and important decisions that were at stake. In respecting autonomy, relatives and caregivers encountered several challenges. These concerned ascertaining information needs, communicating about illness and death, inexperience in end-of-life care, eliciting current and hidden last wishes, the dependence of people with ID and conflicting wishes. Several qualities were important for respecting autonomy: attention to information needs, connecting, recognising end-of-life care needs, giving space to show wishes and preferences, and discussing dilemmas. Conclusions: If caregivers and professionals embrace autonomy as a relational construct, attained through an open, active and reflective attitude, and have more access to knowledge about communication and how to identify end-of-life care needs, this could lead to improved respect for the ID persons' autonomy at the end of life. We discuss the view that a relational concept of autonomy is useful for describing respect for autonomy in end-of-life care for people with ID, but that more reflection and openness is needed to sufficiently employ relationships and regard autonomy as a product of joint work. (aut. ref.)

Background The demand for (care) services for people with intellectual disabilities (ID) is on the rise, because of an expanding population of people with ID as resources are concurrently diminishing. As a result, service providers are increasingly turning to technology as a potential answer to this problem. However, the use and application of surveillance technology (ST) in the care for people with ID provokes conflicting reactions among ethicists and healthcare professionals, and no ethical consensus has been reached as of yet. The aim of this study was thus to provide an overview of how ST is viewed by (care) professionals and ethicists working in the field by investigating what the ideal application of ST in the residential care for people with ID might entail. Methods Use was made of the concept mapping method as developed by Trochim; a computer-assisted procedure consisting of five subsequent steps: brainstorming, prioritising, clustering, processing by the computer and finally analysis. Various participants (ranging from ethicists, physicians to support workers) were invited on the basis of their intended (professional) background. Prior to this study, the views of care professionals on the (ideal) application of ST in the residential care of people with dementia have been consulted and analysed using concept mapping. A comparison between the two studies has been made. Results Results show that the generated views represent six categories, varying from it being beneficial to the client; reducing restraints and it being based on a clear vision to (the need for) staff to be equipped; user friendliness and attending to the client. The results are presented in the form of a graphic chart. Both studies have produced very similar results, but there are some differences, as there appears to be more fear for ST among care professionals in the care for people with ID and views are expressed from a more developmental perspective rather than a person-centred perspective with regard to people with dementia. Conclusions When it comes to views on using technology both in dementia care and the care for people with ID, there appears to be an inherent duality, often rooted in the moral conflict between safety versus freedom or autonomy. What is more, elaboration on abstract concepts often presumed to be self-evident, whether ethical or not, has proven to be difficult. How ST is viewed and apprehended is not so much dependent of the care setting and care needs, but rather whether it is clear to everyone affected by ST, what one wants to achieve with ST. © 2012 The Authors. Journal of Intellectual Disability Research © 2012 Blackwell Publishing Ltd.

Background Anger and aggression among adults with intellectual disability (ID) are associated with a range of adverse consequences for their well-being and that of their family or staff carers. The aims were to evaluate the effectiveness of an anger management intervention for adults with mild to moderate ID and to evaluate the costs of the intervention and its impact on health and social care resource use. This paper is concerned with the latter aim. Methods A cluster-randomised controlled trial was conducted involving day services for adults with ID in Scotland, England and Wales. Incremental costs of delivering the intervention and its impact on subsequent total health and social care package costs were calculated. Full data comparing costs between baseline and follow-up 10 months later were collected for 67 participants in the intervention arm and 62 participants in the control arm. Cost differences between the groups at follow-up, adjusted for baseline levels, were calculated using non-parametric bootstrapping controlling for clustering. Results The mean hourly excess cost of intervention over treatment as usual was £12.34. A mean adjusted cost difference of £22.46 per person per week in favour of the intervention group was found but this was not statistically significant. Conclusions The baseline-adjusted cost difference at follow-up would result in a fairly immediate compensation for the excess costs of intervention, provided the difference is not a statistical artefact. Further research is needed to clarify the extent to which it might represent a real saving in service support costs.

Background Solution-Focused Brief Therapy (SFBT) is a form of behaviour therapy that focuses on evoking desired behaviour rather than on diminishing existing problem behaviour. SFBT has a number of advantages that makes it attractive for use with people who have intellectual disabilities (ID). These advantages include: focus on empowerment for the person, unique intervention strategies for each person based on their particular skills, and recognition of the expert status of the individual identified as the patient resulting in a sense of self-efficacy. Methods To investigate the effects of SFBT, we conducted a controlled pre- and post-test and follow-up study with 20 people with mild ID (MID) receiving SFBT and 18 people with MID receiving care as usual (CAU). We expected that SFBT could help people with MID with (1) reaching treatment goals; (2) improving quality of life (i.e. psychological and social functioning); (3) reducing maladaptive behaviour; and (4) increasing resilience (autonomy and social optimism). Results Two of the 20 clients terminated SFBT prematurely. Most clients receiving SFBT (13 of 18 clients) showed clinically relevant progressions (more than two points on a 1 to 10 scale) towards their treatment goals after SFBT and at follow-up, an additional client showed clinically relevant progress (total of 14 of 18 clients). Directly after therapy, the SFBT group performed statistically significantly better than the CAU group on psychological functioning, social functioning, maladaptive behaviour, autonomy and social optimism. The effect sizes of these improvements were medium to large. At 6-week follow-up, the improvements in psychological functioning, social functioning and maladaptive behaviour in the treatment group were still statistically significant compared with CAU, with medium to large effect sizes. Conclusions Although the study had limitations because of the short follow-up period and the non-random selection of participants, the statistically significant differences between the SFBT and CAU groups and the medium to large effect sizes, indicate the potential effectiveness of SFBT for people with MID.

People with intellectual disabilities (IDs) have been defined as 'socially excluded' and policies of 'social inclusion' invoked to counter this through a focus on paid work and independent living. For many people with IDs this is either not desired or not possible, and as a result many have sought out alternative spaces and activities of inclusion. The paper provides a critique of social exclusion and inclusion, and then goes onto examine (using two case studies) the ways in which people with IDs develop feelings of attachment and belonging within artistic spaces. The paper concludes that not only do these spaces provide mostly positive outcomes for individual people, but also have a potential role in 'reinscribing' the social and cultural understanding of people with IDs.

Background Research suggests that persons with intellectual disabilities (ID) are expected to be more compliant than persons without disabilities and that expectations for compliance begin in childhood. No study, however, seems yet to have included a primary focus on the participatory rights, or rights to express opinions, desires and preferences and to be heard and taken seriously in decision making among young people with ID who are not yet considered legally adult. The purpose of the two current studies was to explore how the right to participation is negotiated for young people with ID in a family context and to determine family members’ recommendations for strategies to facilitate the participation of young people with ID. Method In the first study, four young people with ID, their mothers and two siblings from four families took part in semi-structured interviews about decision making in the family context. In the second study, a mother and daughter from the first study discussed and developed strategies to promote participation for young people with ID. Results In the first study, all participants communicated that young people with ID follow an age-typical yet restricted pattern of participation in decisions about their lives. Young people's participation was consistently framed by familial norms and values as well as their families’ desire to protect them. In the second study, both participants suggested communication about the outcomes of real or imagined decisions would help young family members rehearse decision-making strategies that would facilitate their autonomy while remaining within the bounds of familial norms, values and perceptions of safety. Conclusions Although young people with ID may make fewer independent decisions about their lives than typically developing peers, support in decision making can enable both increased protection and independence.

Background: School leavers with intellectual disabilities often face difficulties in making a smooth transition from school to college, employment or more broadly to adult life. The transition phase is traumatic for the young person with intellectual disabilities (ID) and their families as it often results in the loss of friendships, relationships and social networks. Method: The aim of this study was to explore the family carer views and experiences on transition from school to college or to adult life with special reference to ethnicity. Forty three families (consisting of 16 White British, 24 Pakistani, 2 Bangladeshi and 1 Black African) were interviewed twice using a semi-structured interview schedule. The carers were interviewed twice, Time 1(T1) and Time 2 (T2), T2 being a year later to observe any changes during transition. Results: The findings indicate that although transition planning occurred it was relatively later in the young person’s school life. Parents were often confused about the process and had limited information about future options for their son or daughter. All family carers regardless of ethnicity, reported lack of information about services and expressed a sense of being excluded. South Asian families experienced more problems related to language, information about services, culture and religion. Conclusion: The majority of families lacked knowledge and awareness of formal services and the transition process. Socio-economic status, high levels of unemployment and caring for a child with a disability accounted for similar family experiences, regardless of ethnic background. The three key areas relevant for ethnicity are interdependence, religion, and assumptions by service providers.

Although sex education programmes are thought to be useful in teaching people with intellectual disabilities, there is very little evidence that the material taught is retained by clients. This paper reports data which has been collected routinely on a sex education programme. Forty-six subjects were assessed on their level of sexual knowledge in seven areas: parts of the body, masturbation, male puberty, female puberty, intercourse, pregnancy and childbirth, and birth control and venereal disease. They were retested after a 9-month sex education programme and tested again at a 3-month follow-up. A control group of 14 subjects were tested on two occasions, 4 months apart. There were significant and substantial increases in sexual knowledge on all areas for the experimental group. The control group showed no corresponding increases in knowledge.

Introduction Previous studies have shown a significant association between familial bereavement and the onset of challenging behaviours and psychopathology in people with intellectual disabilities (ID). However, little work has been done to accurately describe the specific symptoms of grief, in particular symptoms of complicated grief in this population. Consensus criteria for the diagnosis of complicated grief have been drawn up and tested for validity in the general population. Aims To examine the occurrence of symptoms of complicated grief, and to explore the relationships between complicated grief and bereavement experience. Method A bereavement history questionnaire and a newly developed measure examining for symptoms of complicated grief were administered to a group of carers of people with mild or moderate ID, who had experienced a parental bereavement within the previous 2 years. The questionnaires were also administered to a matched comparison group, who had not been bereaved. Results/Conclusions This carer-based comparison study has revealed that bereaved individuals with ID experience complicated grief symptoms following the death of a parent, with one-third of the bereaved group experiencing 10 or more clinically apparent symptoms. In addition, complicated grief symptoms were more likely to occur with higher rates of bereavement ritual involvement. These findings have both clinical and research implications.

Background Dietary assessment is a challenge in general, and specifically in individuals with intellectual disabilities (ID). This study aimed to evaluate personal digital photography as a method of assessing different aspects of dietary quality in this target group. Method Eighteen adults with ID were recruited from community residences and activity centres in Stockholm County. Participants were instructed to photograph all foods and beverages consumed during 1 day, while observed. Photographs were coded by two raters. Observations and photographs of meal frequency, intake occasions of four specific food and beverage items, meal quality and dietary diversity were compared. Evaluation of inter-rater reliability and validity of the method was performed by intra-class correlation analysis. Results With reminders from staff, 85% of all observed eating or drinking occasions were photographed. The inter-rater reliability was excellent for all assessed variables (ICC ≥ 0.88), except for meal quality where ICC was 0.66. The correlations between items assessed in photos and observations were strong to almost perfect with ICC values ranging from 0.71 to 0.92 and all were statistically significant. Conclusion Personal digital photography appears to be a feasible, reliable and valid method for assessing dietary quality in people with mild to moderate ID, who have daily staff support.

Background: Little is known about the characteristics of people with intellectual disabilities (IDs) who misuse substances and how such problems impinge upon their well-being. The aim of this paper is to describe how alcohol and drugs affect the health of people with IDs. Methods: A questionnaire was forwarded to all the community ID teams and mainstream addiction teams across Northern Ireland: 67 substance users with IDs and substantial substance-related problems were identified. Results: Alcohol was found to be the main substance to be misused, with one-fifth of the substance users also found to be using a combination of illicit drugs and/or prescribed medication. Nearly three-quarters of the sample were found to be hazardously using alcohol for more than 5years. Being male and young, having a borderline/mild ID, living independently and having a mental health problem were found to be risk factors for developing a `substance related problem'. Various problematic behaviours were identified, including aggression, erratic mood changes, sexual exploitation, difficulties in maintaining relationships and loss of daily routine. Conclusions: The findings of this study suggest that greater emphasis needs to be placed upon the early identification of this hidden population by primary and secondary healthcare personnel, and also ID personnel. Such early identification may also diminish the long-established patterns of use and associated related-behaviours that have been reported within this paper.

The paper discusses the impact which recent advances in gene technology may have for people with intellectual disabilities. It highlights a conflict between the apparent benefits of advances in genetics for the population in general and the negative effects on persons with intellectual disabilities in particular. This conflict is illustrated in the paper through the use of examples, including the implications of a person's lack of capacity to consent to investigations and treatment; the issue of individual responsibility for antisocial behaviour when this is considered to have a genetic component; and the issue of life and death decisions about treatment in the face of a progressive, genetically determined, disorder. The authors adopt a human rights perspective to discuss these examples because it provides a richness to articulate and justify moral concerns in this area which is lacking in much of the current debate as this is dominated by the primacy of autonomy.

Background According to Dutch jurisdiction, individual support plans (ISP) should register the mutual agreements between a person with intellectual disabilities (ID) and a professional service organisation with respect to the support that will be provided. In planning for support, active involvement of both parties is necessary. The current study focuses on the perceptions and experiences of Dutch persons with ID with respect to their involvement in their ISP. Method Data were gathered through semi-structured interviews with 61 people with mild to moderate ID. Participants were recruited in 23 Dutch service provider organisations. A systematic qualitative analysis was performed on the interview transcripts. Results Although persons with ID are present at their ISP meeting, active client involvement in developing, executing and evaluating the ISP is not common practice. Issues of accessibility and lack of control over the process and content of ISP hamper effective involvement of people with ID. Conclusions The study raises questions concerning ISP practices in the Netherlands. The question needs to be addressed as to how to facilitate active involvement of people with ID in planning for support. The results further suggest that support organisations perceive an ISP rather as a formal document to comply with bureaucratic rules than as an instrument of empowerment to enhance control of persons with ID over their own lives.

Background People with intellectual disabilities, if convicted of offences, may be sentenced to prison, but little is known about their life when they are released. Method This study followed up men with intellectual disabilities who were leaving prisons in England. Results The men were hard to contact, but 38 men were interviewed, on average 10 weeks after leaving prison. The men were living in a variety of situations and often were very under-occupied, with limited social networks. A total of 70% were above the clinical cut-off for anxiety, and 59.5% were above the clinical cut-off for depression. The men were receiving little support in the community, and many had been reinterviewed by police. Conclusions Community teams need to provide better support to this very vulnerable group.

Background There are few valid and reliable psychological therapy outcome measures available for use with people with intellectual disabilities (ID). The current study involved the development of a new scale; the Psychological Therapies Outcome Scale – Intellectual Disabilities (PTOS-ID), and the examination of its validity and internal consistency. Method The PTOS-ID was administered to 175 people who have ID accessing specialist ID services. The construct validity of the scale was investigated through exploratory factor analysis, concurrent validity through comparison with the Brief Symptom Inventory and internal reliability through internal consistency analysis. Results Three factors emerged from the principal components analysis with high levels of internal consistency: (1) anger and mood (α = 0.82); (2) positive well-being (α = 0.81); and (3) anxiety (α = 0.76). Factors (1) and (2) were combined to measure psychological distress (α = 0.85), which correlated strongly with the Global Severity Index of the Brief Symptom Inventory (r = 0.85). Conclusions This preliminary study suggests that the PTOS-ID is a psychometrically robust measure of psychological distress and psychological well-being that can be used with people with ID. Further research is required to assess its reliability and ability to detect change.

Background An increased awareness of how people with intellectual disabilities (ID) understand death and dying is necessary in supporting life-long learning, post-bereavement support and planning end-of-life care. Previous research suggests that adults with ID have a limited or ‘patchy’ understanding of the basic biological components of death. However, the relationship between biological understanding of how the body works and conceptualisation of death remains unexplored in this population. Method Thirty adults with ID were interviewed to assess their knowledge of human body function and their understanding of the concept of death. Using pictures, participants were asked if they recognised certain organs, asked to explain the function of various body parts and what would happen if certain body parts were missing or did not work. Participants who referred to ‘life’ or ‘not dying’ as the goal of body function were categorised as ‘Life Theorisers’. In addition, participants were asked about the causes of death, whether all things die and the status of the body after death. Results The results support previous studies suggesting that understanding of death in adults with ID varies from partial to full comprehension and is associated with level of ID. Also, death comprehension was positively correlated with total body interview scores and ‘Life Theorisers’ who understood that body parts maintain life and who spontaneously appealed to ‘vitalistic’ concepts when reasoning about the human body were also more sophisticated in their understanding of death. Conclusion The study highlights the relationship between knowledge about the goal of human body functioning and death comprehension in adults with ID. The potential that learning to adopt a ‘vitalistic’ approach to human functioning may have on the acquisition of a greater understanding of death and dying, understanding illness and supporting end-of-life planning is discussed.

Background 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. Methods 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. Results 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. Conclusions 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.

Background: Aggression is a significant problem amongst people with intellectual disabilities (ID), particularly those residing in hospital settings. Anger is related to aggression in secure services working people with ID, and the effectiveness of psychological interventions in reducing anger has been demonstrated in this population. However, no studies have systematically examined whether levels of aggression reduce following anger treatment with people with ID detained in secure settings. Method: This programme evaluation study concerns individually delivered cognitive anger treatment delivered to 50 patients (44 men and 6 women) with mild to borderline ID, delivered twice weekly for 18 sessions in a specialist forensic hospital service. Aggressive incidents and physical assault data were obtained from records 12 months pre-treatment and 12 months post-treatment. Results: Following completion of treatment, the total number of aggressive incidents recorded in patients' files fell by 34.5%, and the post-treatment reduction in the number of physical assaults was 55.9%. Analysis of the data partitioned into 6-month blocks over the 24-month study period showed that significant reductions in aggressive and violent incidents occurred in the assessment intervals following anger treatment. Conclusions: These findings reinforce the efficacy of cognitive behavioural anger treatment for detained patients with ID and histories of aggression; and despite its methodical limitations the study indicates the ecological validity of this treatment approach.

Background People with intellectual disabilities (ID) are rarely asked about their experiences as users of psychological services and little is known about the views of clients with ID who have undergone cognitive behavioural therapy (CBT). This study aimed to gather the views of adults with ID who had recently taken part in a cluster randomised control trial (RCT) of a staff-delivered manualised CBT anger management group intervention. Method A qualitative method, Interpretative Phenomenological Analysis (IPA), was employed and eleven participants were interviewed. The interviews took place after the intervention, within two weeks of the end of the group, to gain an understanding of service users' experiences of participating in a CBT group. Results IPA of the interview transcripts indicated that the intervention was experienced as effective and enjoyable and a number of themes were identified including: ‘the importance of relationships’, ‘a new me’, ‘new and improved relationships’, ‘presenting myself in a positive light’ and ‘what the group didn't change’. Conclusions The results will be discussed in the context of applying group CBT for adults with ID and implications for service development.

BackgroundSeveral studies have found a heightened prevalence of mental health disorders in people with intellectual disabilities (ID). There have been a number of successful case series and two promising controlled treatment trials of cognitive behaviour therapy (CBT) for emotional disorders (excluding anger) for people with ID. Several authors have promoted the development of trans-diagnostic approaches to cognitive treatment. The present study extends this work with the development and evaluation of a trans-diagnostic treatment manual for CBT in people with ID. MethodA controlled treatment trial was conducted with 12 participants in treatment and waiting list control data. Each treatment participant was matched to a control on age, IQ, presenting problem, and Brief Symptom Inventory (BSI) global severity index (GSI) score. The treatment group was also evaluated on the Glasgow anxiety and depression scales and was followed up for 3 to 6 months after treatment. ResultsThere were no significant differences between groups at baseline. Following treatment, the CBT group was significantly improved when compared with the control group on the GSI scale of the BSI. The ancovas for all other measures were not significant but there were significant improvements for the treatment group on all scaled except BSI depression from pre to post-CBT. Gains were maintained to follow up, and changes were associated with large effect sizes. ConclusionsIt was possible to treat a range of symptoms and psychiatric diagnoses with a general trans-diagnostic CBT manual. The effects of therapy were promising, suggesting that the participants could respond to treatment in a meaningful and helpful manner and supporting the case for further evaluation of the trans-diagnostic approach in ID.

Background A supportive social network is crucial for facilitating social inclusion, which can, in turn, contribute to the quality of life (QOL) for people with intellectual disabilities (ID). In this study, we investigate how people with mild ID perceive their social networks and which network characteristics relate to satisfaction with the network and perceived QOL. Method Data were gathered from 33 young adults with a mild to borderline ID using structured questionnaires: the MSNA to map the social network, the IDQOL‐16 to assess QOL, and a questionnaire to determine satisfaction and wishes with regard to the social network. Results The majority of the participants (73.1%) were satisfied with their social networks. Improvement in the area of strengthening existing ties (e.g. more frequent contact, better contact) was desired as opposed to expansion of the network. Affection – especially towards family and professionals – was most strongly related to perceived QOL. It appears to be essential that relatives live in the same town, can frequently meet up and provide both emotional and practical support. Conclusions The significance of family and the importance of high‐quality interpersonal relationships between professional and client in the lives of young adults with ID cannot be overestimated. Although measures of satisfaction and wishes can have limitations, in actual practice it is considered useful to assess the opinions of clients with respect to their social networks. Interventions can then be tailored to the needs and wishes of the persons themselves.

Background The ITINERIS scale on the rights of persons with intellectual disabilities (ISRPID) was developed to measure the extent to which people with intellectual disabilities (ID) exercise their rights. Method The ISRPID was produced through a virtual Delphi group with 37 professionals and relatives of people with ID from four continents and was refined in small pilot groups with persons with ID in Argentina. It has 30 items and can be self-administered or completed by a proxy. Versions in three languages (English, Spanish and Portuguese) are available. Following its development, the ISRPID was applied in Chile to 705 persons with ID and to a control group of 524 college students without ID. Results Statistical analysis showed that family relationships, community participation, living arrangements and level of disability affect the experience of rights among people with ID. Importantly, with structured supports, people with ID appear able to exercise their rights to a level comparable to that of their peers without ID. Conclusions With further development, the ISRPID may be an appropriate scale to monitor the exercise of rights contained in the United Nations Convention on the Rights of Persons with Disabilities at an individual or group level.

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.

Background The history of ethical guidelines addresses protection of human rights in the face of violations. Examples of such violations in research involving people with intellectual disabilities (ID) abound. We explore this history in an effort to understand the apparently stringent criteria for the inclusion of people with ID in research, and differences between medical and other research within a single jurisdiction. Method The history of the Helsinki Declaration and informed consent within medical research, and high-profile examples of ethical misconduct involving people with ID and other groups are reviewed. The UN Convention on the Rights of Persons with Disabilities is then examined for its research implications. This background is used to examine a current anomaly within an Australian context for the inclusion of people with ID without decisional capacity in medical versus other types of research. Results Ethical guidelines have often failed to protect the human rights of people with ID and other vulnerable groups. Contrasting requirements within an Australian jurisdiction for medical and other research would seem to have originated in early deference to medical authority for making decisions on behalf of patients. Conclusions Stringent ethical requirements are likely to continue to challenge researchers in ID. A human rights perspective provides a framework for engaging both researchers and vulnerable participant groups.

Background There is evidence to suggest a relationship between the way in which staff perceive challenging behaviour and burnout in staff working with people with intellectual disabilities (ID) and challenging behaviour. However, the evidence of a direct link is equivocal and it is possible that a number of different variables mediate this relationship. The aim of the study is to confirm whether there is a relationship between challenging behaviour and staff burnout, and in addition, to test whether staff perceptions about challenging behaviour mediate this relationship. Method Seventy-eight staff completed measures of burnout, challenging behaviour and perceptions about challenging behaviour. The perceptions explored included beliefs about the timeline of behaviour, staff's perception of whether they themselves have control over the behaviour, beliefs about clients' ability to control the behaviour and staff's negative emotional responses. Results Significant positive correlations were found between challenging behaviour and burnout, challenging behaviour and cognitive variables, and cognitive variables and burnout. Regression analyses demonstrated that negative emotions mediate the relationship between challenging behaviour and burnout. Conclusions The results show evidence that there is a relationship between challenging behaviour and burnout that is mediated by negative emotion, namely the fear of potential assault.

Background Although people with intellectual disabilities (ID) are increasingly consulted in research, participation in research agenda setting processes is limited. This is not surprising as their voice can easily be dominated in consultations with researchers. The aim of this article is to explore the potentials of enclave deliberation as a first step towards broad consultation in research agenda setting. Method The research agenda setting process followed a responsive methodology, which is characterised by a cyclical and emergent design. Two persons with ID and one parent participated in the research team. Seven persons with ID and six parents were interviewed individually. Subsequently, 10 focus groups were organised with people with ID and four focus groups with parents. Also, a questionnaire was sent to parents. Results The process towards involvement of people with ID was characterised by several steps that guided enclave deliberation. First, stories of people were collected that reflected their intimate voice. Then, a political voice was further developed through dialogue and interaction in focus groups. This process resulted in a prioritised list of nine potential topics for research. Conclusion The process of developing intimate voice and political voice can be regarded as a concretisation of enclave deliberation among disempowered groups. These steps are necessary to initiate a process towards establishing a broad consultation between different stakeholders about research on ID.

Background: The paper argues that a high quality personal relationship between professionals and clients is a necessary condition of professional knowledge. This epistemological claim is developed against the background of current methods of quality assessment that rely on objectively measurable 'indicators'. Method: A philosophical analysis regarding the nature of professional knowledge in the care sector. The analysis proceeds from Michael Polanyi's concept of tacit knowledge to account for the personal dimension of professional expertise in the care sector. Results: Quantitative methods of quality assessment understand 'quality of care' as being independent from the professional who generates it. Consequently, quality assessment as currently practiced necessarily renders the personal dimension of professional knowledge invisible, thereby excluding it from managerial attention and support. To indicate the relevance of Polanyi's concept of tacit knowledge, the paper offers some observations from the practice of care in a group home for people with intellectual disabilities. Conclusion: The paper concludes that a high quality relationship between professionals and their clients is crucial for quality of care. This relationship generates the positive interaction that enables professionals to gain adequate insight in the needs of their clients. © 2010 The Author. Journal compilation © 2010 Blackwell Publishing Ltd.

Background Care and service trajectories for people with intellectual disabilities (ID) are routes within the healthcare delivery system that consist of all the steps that people with ID and their families have to take in order to realise the needed care and services. In contrast to the growing system-orientated knowledge concerning quality of care delivered through collaborative relationships between care providers, specific user-orientated knowledge regarding the quality of care and service trajectories is largely lacking. Aim This article aims to describe the development of the QUALITRA-ID; a user-orientated interview concerning the quality of care and service trajectories for people with ID. Methods First, the phenomenon ‘care and service trajectories’ is conceptualised on the basis of document analysis and semi-structured interviews with key informants in the field of health care for people with ID. Second, the quality of care and service trajectories is operationalised by means of eight focus group discussions with intellectually disabled persons and their parents/relatives and a review of the literature. Third, the QUALITRA-ID is constructed using the results of the conceptualisation and operationalisation of the phenomenon. Fourth, the QUALITRA-ID is refined in two stages that were concerned with examining the feasibility, understandability and completeness of the QUALITRA-ID. The second stage was also concerned with the first quality assessment among people with ID. Results The final result is a 24-item QUALITRA-ID consisting of a personal conversation and a closed-ended part.

Background Longitudinal studies show that in the general population IQ declines with age: early and rapidly in the case of performance IQ, later and more slowly in the case of verbal IQ. These populations have not apparently included people with intellectual disabilities (ID). Method A literature search identified 11 studies, some cross-sectional and others longitudinal, which provided data on a variety of verbal and performance tests, over periods from 3 to 19 years, on older people with ID. Following statistical advice the results from the different tests were converted into the equivalent of, for verbal scores, British Picture Vocabulary Scale, and for performance scores, Leiter International Performance Scale, raw scores. Percentage change between earlier and later scores was then calculated. Results With one exception the studies considered tend to show verbal ability declining relatively more, and performance ability declining relatively less, than has been shown to occur in the general population. Potential confounding factors, such as population attrition, cohort effects, etc., are thought not to have affected these results. Conclusions The pattern of change with age in verbal and performance ability appears different in people with ID from that seen in the general population. Some possible reasons for this difference are discussed.

Background Reducing inappropriate restraint is an important mission of services for people with intellectual disabilities (IDs). Methods In this study, 52 clients who had been restrained were compared with 52 other clients, individually matched on age, gender and level of IDs. Participants were mostly adults with severe and profound IDs in an institutional setting. Results The two groups differed on six Diagnostic Assessment for the Severely Handicapped-II (DASH-II) and three Aberrant Behaviour Checklist (ABC) scales. However, discriminant functional analysis demonstrated that only DASH-II Impulse control disorder and ABC Irritability and Elimination disorder scores predicted group membership but only moderately. Conclusions Individual differences in maladaptive behaviours were only moderately predictive of restraint use.

Recent controlled studies have supported the effectiveness of anger management training for people with intellectual disabilities (IDs). This report describes an evaluation instrument designed to assess their usage of specific anger coping skills. The Profile of Anger Coping Skills (PACS) is designed for completion by a staff member or carer. Three situations are first elicited in which a client frequently displays anger. The respondent then rates each situation for the extent to which the client deploys each of eight behavioural and cognitive coping skills. In a preliminary reliability study, 20 users of a day service for people with IDs were rated independently by two staff members, with one of them completing the assessment on two separate occasions: the PACS showed good test-retest reliability and lower, but still acceptable, interrater reliability. The PACS was subsequently used, in a different day service, as part of the assessment pack administered before and after a 12-week anger management group, with a parallel assessment of an untreated control group. The treated group showed substantial decreases in measures of anger, which were maintained at 6-month follow-up. Increases in PACS-rated anger coping skills were also seen in all participants in the anger management group, but not in the control group. There were differences in the extent to which different coping skills were acquired by the treated group, and there were also individual differences in the profile of specific skills acquired. It is concluded that the PACS is a reliable instrument for assessing anger coping skills, particularly when used repeatedly with the same informant. It provides information that is useful for both individual care planning and the design of future anger management programmes.

Background Although there has been growing recognition of the importance of enabling people with intellectual disabilities (ID) to be more directly involved in managing their own financial affairs, so far, little is known about this aspect of their decision- making. Method Using vignettes and semi-structured interviews, the financial decision-making abilities of men and women with mild ID (n = 30; mean FSIQ = 61.80; SD = 10.59) were compared with those of their counterparts in the ‘general population’ (n = 16; mean FSIQ = 101.56; SD = 7.62) and ‘very able’ individuals (n = 14; mean FSIQ = 123.93; SD = 7.60). Results Whilst the financial decision-making abilities of participants with ID were generally weaker than those of other participants, the differences were not discrete, and many individuals were judged to be able to make at least some personal financial decisions. For all three groups, understanding information relevant to the decision, and reasoning with it, were the hardest parts of the process. Conclusions The findings support a functional approach to the assessment of financial decision-making for both legal and clinical purposes, but raise concerns about mental incapacity legislation and assessment.

Background This study examines the importance of staff judgements of responsibility for challenging behaviour in predicting their emotional and intended helping responses. Methods Sixty-two carers completed questionnaires rating attributions of internality, stability and controllability, emotions of sympathy and anger, judgements of responsibility for the development of challenging behaviour and for its resolution and intended effort in helping in response to a scenario describing an aggressive behaviour. Results Results showed significant correlations between judgements of responsibility and attributions, emotions and intended effort in helping. Regression analysis showed that the best predictor of intended helping is the emotion of sympathy and that sympathy is best predicted by the attribution of internality, the judgement that people are not responsible for the development of challenging behaviour and the judgement that they are responsible for the resolution of the behaviour. Conclusions Judgements of responsibility predict emotional and intended behavioural responses of carers of people with intellectual disabilities and challenging behaviour. The results are discussed in relation to previous work on carer attributions in response to challenging behaviour. Implications for clinical work with carers are considered.

The present article describes a study of consumer satisfaction in a group of class members who are part of a mental disability law reform suit. Consumer satisfaction was considered one aspect of compliance with this lawsuit. The class members have a primary diagnosis of intellectual disability, and in most cases, a secondary diagnosis of mental illness. Conducting consumer satisfaction studies among people with intellectual disabilities is often challenging because some of these consumers have difficulty articulating their needs and concerns. An interview schedule with simple quantitative and qualitative satisfaction questions was used. The present study investigated the satisfaction of a subgroup of these class members prior to and after having a court-supported service plan. The results reveal that these consumers became considerably more satisfied, and many of their specific satisfactions and dissatisfaction were identified. The results suggest that both quantitative and qualitative consumer responses can be helpful in determining compliance with court issues.

People with intellectual disability share the mixed fortunes of the diverse countries in that they live, as well as the social and political changes that mark life in Europe at the close of the twentieth century. The European Union exerts its influence through common policies and centrally funded initiatives which promote the social and vocational integration of people with intellectual disabilities. At the same time, many countries in Central and Eastern Europe are building a new and as-yet untested social order. This paper outlines the distinctive features of European identity. Some of the gains already achieved on behalf of Europeans with intellectual disability are presented, as well as some of the problems which continue to threaten their well-being and inclusion. It is suggested that partnerships between countries and regions can help to chart new territory for citizens of the Old World.

Background 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. Method 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. Conclusions 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.

Background Efforts to uphold and promote the human rights of people with intellectual disabilities (ID) are being affected by the increasing emphasis on ‘choice’ in the delivery of social care services. While rights presume subjects or selves to whom they apply, there is a disconnect between the subjects presumed within human rights frameworks and the variable capacities of a heterogeneous ID population. This disconnect is amplified by choice discourses which characterise current service provision based upon neoliberal ideologies. Method Conceptual assumptions and theoretical positions associated with human rights in relation to people with ID are critically examined. Results The analysis results in an argument that current conceptualisations of personhood in relation to human rights exclude people with ID. The adverse effects of this exclusion are exacerbated within services which emphasise the permissive rights associated with a neoliberal agenda of ‘choice’ over protective rights. Conclusions In order to ensure that the human rights of people with ID are upheld, neoliberal emphases on choice need to be tempered and a more nuanced and inclusive notion of personhood in relation to universal human rights needs to be adopted.