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Background: In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice. Methods: An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence. Results: Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence. Conclusions: There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice.

Background: International and UK legislation confirms and supports the right of adults with intellectual disabilities (ID) to vote. It is widely accepted, although not previously empirically confirmed, that citizens with ID are under-represented at the polls. Method: To document the extent of their under-representation at the polls, the names and addresses of adults using services for people with ID in one county in the UK, were compared with the marked electoral register following the 2005 general election. Adults using services for people with ID were identified either as un-registered, as registered to vote but not having voted, or as having voted. Results: Adults with ID living in the county at the time of 2005 general election were substantially under-represented at the polls. Compared with the general population, proportionally fewer of them were registered to vote, and proportionally fewer of them voted. Compared with adults living in private homes, those in supported accommodation were more likely to be registered to vote, but less likely to use their vote. The most significant predictor of participation was living in a household with at least one other active voter. Conclusions: The importance of the close proximity of an active voter is likely to be different for adults in supported accommodation compared with those living in private households. Further research is required to understand what features of these two very different types of residences are affecting voting opportunities. (Contains 1 figure and 3 tables.)

Background: The development of a nurse‐led approach to managing epilepsy in adults with an intellectual disability (ID) offers the potential of improved outcomes and lower costs of care. We undertook a cluster randomised trial to assess the impact on costs and outcomes of the provision of ID nurses working to a designated epilepsy nurse competency framework. Here, we report the impact of the intervention on costs. Method: Across the United Kingdom, eight sites randomly allocated to the intervention recruited 184 participants and nine sites allocated to treatment as usual recruited 128 participants. Cost and outcome data were collected mainly by telephone interview at baseline and after 6 months. Total costs at 6 months were compared from the perspective of health and social services and society, with adjustments for pre‐specified participant and cluster characteristics at baseline including costs. Missing data were imputed using multiple imputation. Uncertainty was quantified by bootstrapping. Results: The intervention was associated with lower per participant costs from a health and social services perspective of −£357 (2014/2015 GBP) (95% confidence interval −£986, £294) and from a societal perspective of −£631 (95% confidence interval −£1473, £181). Results were not sensitive to the exclusion of accommodation costs. Conclusions: Our findings suggest that the competency framework is unlikely to increase the cost of caring for people with epilepsy and ID and may reduce costs. [ABSTRACT FROM AUTHOR]

Background In the UK, the closure of 'long-stay' hospitals was accompanied by the development of community teams (CTs) to support people with intellectual disabilities (IDs) to live in community settings. The self-reported experiences of staff working in such teams have been neglected. Methods Focusing on a single county-wide service, comprising five multi-disciplinary and inter-agency CTs, we measured perceptions among the health care and care management Team members of (1) their personal well-being; (2) the functioning of their team; and (3) the organisation's commitment to quality, and culture. Results Almost three-quarters of the questionnaires were returned (73/101; 72%). The scores of health care practitioners and care managers were very similar: (1) the MBI scores of more than half the respondents were 'of concern'; (2) similarly, almost four in ten respondents' scores on the Vision scale of the TCI were 'of concern'; (3) the perceived commitment to quality (QIIS-II Part 2) was uncertain; and (4) the organisational culture (QIIS-II, Part 1) was viewed as primarily hierarchical. Discussion The perceived absence of a vision for the service, combined with a dominant culture viewed by its members as strongly focussed on bureaucracy and process, potentially compromises the ability of these CTs to respond proactively to the needs of people with IDs. Given the changes in legislation, policy and practice that have taken place since CTs were established, it would be timely to revisit their role and purpose. [ABSTRACT FROM AUTHOR]

Background For many adults with an intellectual disability (ID), mealtimes carry significant health risks. While research and allied clinical guidance has focused mainly on dysphagia, adults with a range of physical and behavioural difficulties require mealtime support to ensure safety and adequate nutrition. The extent of need for and nature of such support within the wider ID population has yet to be reported. Methods In this study, we have estimated the prevalence of need for mealtime support among people with ID in the UK, using a population of 2230 adults known to specialist ID services (in Cambridgeshire, UK, total population 586 900). In a sample ( n = 69, aged 19 to 79 years, with mild to profound ID), we characterised the support provided, using a structured proforma to consult support workers and carers providing mealtime support, and health and social care records. Results Mealtime support was found to be required by a significant minority of people with ID for complex and varied reasons. Prevalence of need for such support was estimated at 15% of adults known to specialist ID services or 56 per 100 000 total population. Within a sample, support required was found to vary widely in nature (from texture modification or environmental adaptation to enteral feeding) and in overall level (from minimal to full support, dependent on functional skills). Needs had increased over time in almost half ( n = 34, 49.3%). Reasons for support included difficulties getting food into the body ( n = 56, 82.2%), risky eating and drinking behaviours ( n = 31, 44.9%) and slow eating or food refusal ( n = 30, 43.5%). These proportions translate into crude estimates of the prevalence of these difficulties within the known ID population of 11.9%, 6.6% and 6.4% respectively. Within the sample of those requiring mealtime support, need for support was reported to be contributed to by the presence of additional disability or illness (e.g. visual impairment, poor dentition and dementia; n = 45, 65.2%) and by psychological or behavioural issues (e.g. challenging behaviour, emotional disturbance; n = 36, 52.2%). Conclusions These findings not only highlight the need for a multidisciplinary approach to mealtime interventions (paying particular attention to psychological and environmental as well as physical issues), but also signal the daily difficulties faced by carers and paid support workers providing such support and illustrate their potentially crucial role in managing the serious health risks associated with eating and drinking difficulties in this population. [ABSTRACT FROM AUTHOR]

Background In the UK those paid to support adults with intellectual disabilities must manage two potentially conflicting duties that are set out in policy documents as being vital to their role: protecting service users (their duty of care) and recognising service users' autonomy. This study focuses specifically on the support of people with the genetically determined condition, Prader-Willi syndrome (PWS). Due to the behaviours associated with PWS, the support of this group of people vividly illustrates the tension between respect for autonomy and duty of care. This article explores how support workers working in a residential group home managed their competing duties of managing risk and promoting independence in practice. Methods An ethnographic study, comprising of qualitative observations, semi-structured interviews and documentary analysis, was undertaken to investigate the work of support workers in a UK residential group home specialising in the support of adults diagnosed with PWS. The study focused on how support workers attempted to reconcile the tension between protecting service users from the risks associated with the syndrome and acknowledging service users' autonomy by enabling independence. Results Findings demonstrate that risk was central to the structure of care delivery at the group home and support workers often adhered to standardised risk management procedures. The organisation also required support workers to promote service users' independence and many thought acknowledging service users' autonomy through the promotion of their independence was important. To manage tensions between their differing duties, some support workers deviated from standardised risk management procedures to allow service users a degree of independence. Conclusions There is a tension between the duty of care and the duty to recognise autonomy at the level of service delivery in residential homes. Support workers attempt to manage this tension; however, further work needs to be done by both residential services and policy makers to facilitate the reconciliation of the duty of care with the duty to recognise service users' autonomy in practice. [ABSTRACT FROM AUTHOR]

Background International and UK legislation confirms and supports the right of adults with intellectual disabilities (ID) to vote. It is widely accepted, although not previously empirically confirmed, that citizens with ID are under-represented at the polls. Method To document the extent of their under-representation at the polls, the names and addresses of adults using services for people with ID in one county in the UK, were compared with the marked electoral register following the 2005 general election. Adults using services for people with ID were identified either as un-registered, as registered to vote but not having voted, or as having voted. Results Adults with ID living in the county at the time of 2005 general election were substantially under-represented at the polls. Compared with the general population, proportionally fewer of them were registered to vote, and proportionally fewer of them voted. Compared with adults living in private homes, those in supported accommodation were more likely to be registered to vote, but less likely to use their vote. The most significant predictor of participation was living in a household with at least one other active voter. Conclusions The importance of the close proximity of an active voter is likely to be different for adults in supported accommodation compared with those living in private households. Further research is required to understand what features of these two very different types of residences are affecting voting opportunities. [ABSTRACT FROM AUTHOR]