Supported Decision-making in the United Kingdom: Lessons for Future Success
In: Research and practice in intellectual and developmental disabilities: RAPIDD, Band 2, Heft 1, S. 17-28
ISSN: 2329-7026
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In: Research and practice in intellectual and developmental disabilities: RAPIDD, Band 2, Heft 1, S. 17-28
ISSN: 2329-7026
In: Journal of applied research in intellectual disabilities: JARID, Band 17, Heft 1, S. 37-48
ISSN: 1468-3148
Background It was proposed by Rogers & Pennington (1991) that an early deficit in imitation, together with a cascade of developmental disorders in emotion sharing and Theory of Mind, could be important in understanding autism. Having already found that imitation appeared not to be specifically or universally impaired in autism, the present study tested whether there were distinctions between different types of actions, such as symbolic versus non‐symbolic, one‐handed versus two‐handed or symmetrical versus asymmetrical actions, on a test of elicited imitation.Methods A large battery of tasks was used to elicit imitation from three groups of autistic children and adults (aged 4–34 years of age), two groups of typically developing children and a group of children with mild‐to‐moderate intellectual disabilities.Results The majority of children and adults with autism had few impairments relative to the controls, although certain actions did seem more difficult, especially for the youngest children. For example, actions within the categories of 'symbolic actions' and 'asymmetrical actions' seemed to give some groups more problems. Certain types of errors such as hand reversals and using body parts as objects were found in both autistic and non‐autistic groups, but, for the most part, in the youngest children in the whole sample. A final analysis compared the number of partial imitations for eight specific actions.Conclusions The overall picture was not one of an autism‐specific deficit in imitation, but rather of a normal (i.e. age‐related) developmental trend. These results are discussed in terms of Rogers & Pennington's theory and other leading theories.
Social services for people with disabilities have undergone substantial changes over time, in particular in the past two decades. Whilst lack of affordable and appropriate housing is a barrier to community living for many people with disabilities, it is only one part of the jigsaw. This book traces some of these changes, in particular related to living situation and support available, in a range of different countries and considers the factors that have influenced these changes. This book considers other aspects of what is needed to bring about real change in the lives of all people with disabilities
Active Support is a proven model of care that enables and empowers people with intellectual disabilities to participate fully in all aspects of their lives. This evidence-based approach is particularly effective for working with people with more severe disabilities, and is of growing interest to those responsible for providing support and services. The authors provide a comprehensive overview of Active Support and how it can be used in practice, based on the theory and research underpinning the methods involved. They describe how to engage people with intellectual disabilities in meaningful ac
In: Research and practice in intellectual and developmental disabilities: RAPIDD, Band 6, Heft 2, S. 139-146
ISSN: 2329-7026
In: Journal of applied research in intellectual disabilities: JARID, Band 31, Heft 2
ISSN: 1468-3148
BackgroundThe quality of life (QOL) of people with intellectual disability living in supported accommodation services is variable, influenced by many possible factors. Various frameworks have attempted to identify these factors without assigning value, direction of influence or relative impact on outcomes.MethodsA realist review of the literature aimed to expose different propositions about variables influencing QOL outcomes and review the strength of supporting evidence for these, to identify their relative influence. Evidence was reviewed for and against each of five clusters.ResultsEvidence was strongest for the presence of staff practices (use of Active Support), front‐line management practice (use of practice leadership), culture (enabling and motivating), human resources policies and practice (that support front‐line leaders and recruitment of staff with the right values), adequate resources, and small, dispersed and homelike settings.ConclusionsThe evidence informs policy and practice but in some clusters remains limited, warranting further research which measures outcomes on all QOL domains.
In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 8, Heft 2, S. 125-133
ISSN: 1741-1130
AbstractThe Czech national policy on social services and health is based on the principal of human rights and empowerment of persons with disabilities. Based on published literature and reports, as well as knowledge and experience from working in the field, this mainly conceptual article summarizes progress over the past two decades in the Czech Republic in moving from an institutional era toward one that values community‐based alternatives. While European and national policy is supportive of community living, and new individualized funding streams have been created, progress in the Czech Republic toward the goal of community living for everyone with a disability has been slow and has met with many barriers. The authors highlight the need to consider issues such as the availability of data related to funding and delivery of services, planning of the transitional period toward community‐based services, accessibility of reports on quality of services (including institutions), and the conflict of interests created by the system of guardianship. The authors conclude that despite economic circumstances that may slow down the process of deinstitutionalization, the direction of change toward community living needs to be sustained.
In: Zerbitzuan: gizarte zerbitzuetarako aldizkaria, Band 49, S. 137-146
ISSN: 1134-7147
In: Journal of applied research in intellectual disabilities: JARID, Band 24, Heft 5, S. 489-494
ISSN: 1468-3148
In: Journal of applied research in intellectual disabilities: JARID, Band 17, Heft 1, S. 31-35
ISSN: 1468-3148
This paper responds to four commentaries on our original paper in this issue. We respond to issues raised under three headings addressing the scale of the task envisaged in the 2001 White Paper Valuing People, the feasibility and effectiveness of individual planning and how to achieve person‐centred action. We conclude that there is substantial agreement about the goals of intellectual disability services and the processes that need to take place around individuals to help them get what they need and want. We disagree about whether person‐centred planning will deliver this, and about whether it will provide a robust basis for claiming and defending the resources people with intellectual disabilities will need in the future.
In: Scandinavian journal of disability research, Band 23, Heft 1, S. 180
ISSN: 1745-3011
In: Journal of policy and practice in intellectual disabilities: official journal of the International Association for the Scientific Study of Intellectual Disabilities, Band 17, Heft 3, S. 207-218
ISSN: 1741-1130
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.
In: Research and practice in intellectual and developmental disabilities: RAPIDD, Band 1, Heft 2, S. 98-107
ISSN: 2329-7026
In: Journal of applied research in intellectual disabilities: JARID, Band 25, Heft 4, S. 291-307
ISSN: 1468-3148
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.
In: Journal of applied research in intellectual disabilities: JARID, Band 22, Heft 4, S. 380-390
ISSN: 1468-3148
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.