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AbstractThe disabled people's movements have successfully influenced public policies and laws. Self‐advocates who are autistic or have an intellectual disability have been working alongside other advocates for recent decades. Practice theory has rarely been used in disability research. This study explores "practice theory" through the analysis of interviews with advocates and self‐advocates within the autism and intellectual disability advocacy movements. This is a qualitative, empirical study based on interviews and focus groups with 43 participants in two countries. The data were collected in 2016–17. Content analysis was used to identify themes. Data indicate that everyday practices of self‐advocates and advocates such as parent advocates and professional advocates largely overlap. There are five major types of practices that are done by nearly all advocates: "informing and being informed," "using media," "supporting each other," "speaking up," and "bureaucratic duties." Contrary to several previous studies on self‐advocacy that emphasized "speaking up" as the main activity in advocacy, this study found that most practices of advocates and self‐advocates are "para‐advocacy" practices that may or may not lead directly to "speaking up." Practices of self‐advocates are often embedded in other everyday activities people do. The line between practices that belong to self‐advocacy and practices outside self‐advocacy may not always be clear even to self‐advocates. Findings also indicate that hierarchies in the disability movement influence strongly the position of self‐advocates.

Background  Previous research has found that active support is effective at increasing levels of participation in activities and supporting a good quality of life for people with intellectual disabilities. However, there has been little research on the effect of active support on other outcome measures.Methods  This study uses observational methodology, combined with staff‐rated measures, to explore the impact of the implementation of person‐centred active support on the lives of 30 people with severe and profound intellectual disabilities living in small group homes.Results  Analysis indicated that significant increases in both the amount of assistance people received and the quality of that assistance were accompanied by significant increases in engagement, participation, choice‐making opportunities and a significant reduction in challenging behaviour and in particular, self‐stimulatory behaviour.Conclusions  The paper discusses the implications of the findings for both practice and for further research.

Background  Despite the acknowledged difficulties of measuring satisfaction for people with intellectual disabilities, the current study examined the quality of life (QoL) of the Camberwell Cohort, a total population sample of people with severe intellectual disability and/or autism [Wing & Gould, Epidemiology and Classification, 9, 1979, 11].Methods  The Lifestyle Satisfaction Scale (LSS) [Harner & Heal, Research in Developmental Disabilities, 14, 1993a, 221] was combined with selected questions from the Quality of Life Questionnaire Schalock & Keith 1993, Quality of Life Questionnaire, IDS Publishing Corporation, Worthington and conducted with 12 people with intellectual disabilities and 72 proxy respondents.Results  Inter‐rater reliability on overall score was available for 10 participants and was acceptable with a Spearman's Rank order correlation co‐efficient over 0.8. There were no significant differences between the scores of proxies and service users on the domains of the LSS. The sample of service users who completed the interviews was too small to allow further detailed analysis of their responses. However, responses from the proxy interviews indicated that there were no differences in life satisfaction between those socially impaired and socially able. However those with autism were reported to be less satisfied on Community Satisfaction while those with challenging behaviour had lower scores overall and specifically on Community Satisfaction. Those with an IQ below 50 had lower scores overall, than those with an IQ above 50 and specifically on Recreation Satisfaction. Linear regression analysis on total QoL score indicated that only three variables seemed to be important in predicting proxy QoL scores: challenging behaviour at Time 3, IQ at Time 3 and independent living skills at Time 1.Conclusions  Despite the difficulties encountered, this study provided some support for the widely help belief that QoL is lower for those with intellectual disability and for those with challenging behaviour.

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

Background  This study presents data on the characteristics of the Camberwell Cohort, 25 years after they were first assessed in the 1970s [Wing & Gould (1979) Journal of Autism and Childhood Schizophrenia vol. 9, pp. 11–29]. It also presents data on changes over time which adds to that presented in Beadle‐Brown et al. [Journal of Intellectual Disability Research (2000) vol. 32, pp. 195–206].Methods  Measures of level of skills, ability and behaviour, including self‐care, educational, social skills, cognitive ability and challenging behaviour, were conducted with as many of the cohort as possible. In addition, background information was collected on diagnosis, placement history, daytime activity and family contact.Results  The cohort (n = 91) now aged between 27 and 42 years were living mostly in the community (68%) or with their parents (27%). Sixty‐four per cent of the sample who could be tested (n = 36) had an IQ below 50, 73% were socially impaired and 72% had some form of autistic spectrum disorder. There were few changes over time between time 2 (1980s) and time 3 – as reported in Beadle‐Brown et al., most changes occurred during childhood and early adolescence. However, for those who had been in institutional care for more than 3 years, there were a number of self‐care skills which significantly increased between time 2 and time 3 (after a move into the community).

Abstract
Choice and control are pivotal in UK Government policy for achieving personalisation of social care for people with learning disabilities; however, little is known about the role care management plays in supporting people with learning disabilities finding social care services. This article explores that the support care managers provide people with learning disabilities, how care managers source and use information to offer choice in relation to accommodation and support, with a focus on people receiving managed budgets. Qualitative interviews with eight care managers from two local authorities in the South East of England were analysed using thematic network analysis, producing three global themes. The first 'shaping choice' describes the role of the care management process and assessments have in determining opportunities for choice. The gathering and interpretation of quality information is explored in the second global theme, highlighting the role of visiting settings to understand their quality. 'Choice in principle' is the third global theme, whereby the factors shaping choice come to be seen as choice akin to that anyone else has. These findings have implications for future policy and practice in relation to care management for people with learning disabilities.

AbstractBackgroundThe aim was to explore the relationship between quality of active support and communication support for people in group homes with high and low support needs.MethodsData from 182 service users, 20–81 years (mean = 40), 89 with high support needs, were observed to have either good (n = 142) or poor (n = 40) communication support. Measures were of quality of active support, engagement and staff contact; field notes provided examples of good and poor communication supports.ResultsWe found a relationship between the quality of communication support and active support. Receiving good communication was associated with higher levels of engagement. Field notes included some examples of appropriate communication supports, but limited use of augmentative and alternative communication (AAC).ConclusionsStaff show limited use of appropriate communication with people having high support needs who require AAC. Strategies to improve quality of practice are discussed.

This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.

This article draws on the findings of the EU Framework 7 project DISCIT to explore the living situation of people with disabilities a decade after the adoption of the UN Convention on the Rights of Persons with Disabilities in nine European countries representing different welfare state models and different stages in the process of deinstitutionalisation. A review of the research literature, policy and available statistics was combined with interviews with key informants in each country to explore the current living situation, changes over time and the barriers to, and facilitators for change. The article focuses in particular on whether people are experiencing opportunities for social inclusion on an equal basis with others. Although a lack of available data hampered conclusions on living situation, it was clear that there had been some change in terms of policy and funding streams available to support community living. Some countries had moved slightly towards community living, while others reported more people in institutions or the development of bigger services in the community. There was evidence of continued inequality in the living situation and full inclusion of people with disabilities, with those with intellectual disability and psychosocial disabilities being the most affected. In terms of barriers (and consequently facilitators) there were three sources: 1) policy, 2) social care and support systems, and 3) awareness, attitudes and advocacy. The need to involve people with disabilities in policymaking and the need for a co-ordinated approach between all actors in the disability sector was seen as critical for achieving further change.

BackgroundA dimension of the culture in group homes is staff regard for residents. In underperforming group homes, staff regard residents as being not 'like us' (Bigby, Knox, Beadle‐Brown, Clement & Mansell, 2012). We hypothesized the opposite pole of this dimension, in higher performing group homes, would be that staff regard residents positively.MethodThree in‐depth qualitative case studies were conducted in higher performing group homes using participant observation, interviews and document review.ResultsConsistent pattern of staff practices and talk, as well as artefacts, demonstrated staff had a positive regard for residents, who were seen as being 'like us'. Explicit and continuing attention was given to sustaining positive regard for residents in everyday staff practices and to turning abstract values into concrete realities.ConclusionsThis positive cultural norm was established, operationalized and embedded through structures, such as a formal policy about language, and processes such as peer monitoring and practice leadership.

Background  Determining the relative importance of variables including client characteristics, setting features, staffing and care practices on the lives of people with learning disabilities in residential care continues to be a relevant topic for research.Methods  Measurements were made of the adaptive and problem behaviour of 343 adults with intellectual disabilities living in 76 residential homes and of various aspects of staffing, care practices (extent of active support) and resident engagement in meaningful activity. Ordinal and logistic regression was used to identify variables best predicting engagement and care practices.Results  Only adaptive behaviour and care practices predicted resident engagement in meaningful activity; only age and adaptive behaviour predicted care practices.Conclusions  Given the limited scope for changing resident adaptive behaviour, attention should be given to improve active support in residential homes in order to promote greater engagement in meaningful activity by people with learning disabilities.