Identifying conceptualizations and theories of change embedded in interventions to facilitate community participation for people with intellectual disability: A scoping review (original) (raw)
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Individual self-determination and civic engagement are key resources in the life of every individual. All the more so in the case of individuals with an intellectual disability (ID), who are frequently prevented, voluntarily or passively (for example through the failure to promote favourable conditions for learning), from implementing the resources that are required for acquiring and developing these skills. The importance of being able to apply these skills in everyday life is however acknowledged and encouraged by the UN Convention on the Rights of Persons with Disabilities (2006). This article presents and analyses the conditions for vertical and horizontal collaboration (Greenhalgh et al., 2004), which have contributed to the successful introduction of an educational approach to self-determination and active citizenship in a social care establishment for individuals having a mild to moderate ID. The research was conducted over two years (2014-2016) within the framework of a partnership between the establishment concerned and academic researchers. The principal stakeholders involved in the research, including 16 individuals with an ID, 13 educational care professionals, 4members of the managerial staff and 4 research workers, worked together to promote the adoption of principles of self-determination and civic engagement within the establishment , and designed a training programme aimed at individuals with an ID and professional support staff. The effectiveness of the intervention mechanism applied by this team has been verified and validated using a pre-and post-test evaluation, the results of which have appeared in a separate publication. A qualitative analysis of the collaboration conditions indicates, and on first sight this may appear paradoxical, that individual self-determination and
2008
This qualitative study examined the participatory experiences of people with an intellectual disability as members of government disability advisory bodies in Australia. These forums are one of the strategies adopted by governments to enable people with an intellectual disability to participate in the formulation of social policy. Such opportunities have arisen from progressive policy that frames people with an intellectual disability as full citizens with equal rights to inclusion and participation in society. Little research has considered how people with an intellectual disability experience the participatory opportunities that have grown from this recognition of their rights. This reflects the more traditional focus on their status and participation as consumers and service users. The central question of this study is how people with an intellectual disability experience participation in government advisory bodies, and how such forums can be inclusive and meaningful. This study positions people with an intellectual disability as the experts about their own experiences by relying primarily on their first person accounts of their experiences. Ethnographic and case study methods were employed including indepth interviews with the central participants, document analysis, observation of the work of the advisory bodies and interviews with others involved in advisory xi bodies. Analysis led to the development of a typology of participation that describes the political and personal orientations people have to participation. The study found that structures and the processes used by advisory bodies can mediate people's experiences; however more significantly, the experiences of people with intellectual disability are shaped by their perception of how they are regarded by others. Central to this is the efficacy of support based on the development of collegiate relationships, similar to the notion of civic friendship described by Reinders (2002), rather than support that is solely focussed on tangible accommodations The study concludes that citizen participation bodies have not fully recognised the personal and political potential of members with an intellectual disability. It presents evidence that people with an intellectual disability are capable of this form of participation, can provide legitimate and informed perspectives on policy and can engage meaningfully, given full recognition of their capacity to participate as well as structures and processes that enable this. xii STATEMENT OF AUTHORSHIP "Except where reference is made in the text of the thesis, this thesis contains no material published elsewhere or extracted in whole or in part from a thesis for any other degree or diploma. No other person's work has been used without due acknowledgement in the main text of the thesis. This thesis has not been submitted for the award of any degree or diploma in any other tertiary institution" Signed: Date: CHAPTER ONE The initial objection to us taking part was that we hadn't got the skills. Then we got involved and spoke up and they said we were unrepresentative. We hadn't really got learning difficulties. We weren't typical of disabled people. Or they'd say someone put us up to it! They just couldn't believe we can speak for ourselves. (Beresford & Croft, 1993, p. 18) CHAPTER THREE POLICY CONTEXT Clearly, the achievement of global human rights for all citizens is a matter of securing justice. While Governments as well as individual citizens bear a moral responsibility towards this goal, it should be "common sense" for civil society to recognize the human resource potential in all of its members. It is imperative that planners remain sensitive to the disability dimension. (United Nations, 2003-2004)
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Despite many initiatives to reframe and support inclusion for people with disabilities, people with intellectual disabilities continue to experience social exclusion in their local communities. This study shares the perspectives of people with an intellectual disability on what matters to them in their local communities. This study aims to inform local governments of the value of engaging with and listening to local people with intellectual disabilities and is an important exploration of how the social sustainability of cities is framed and valued by people who have historically been socially and geographically excluded. Focus groups and interviews were conducted in six local government areas, with a mix of metropolitan and regional areas, in two states of Australia—NSW and Victoria. The study analysed how 45 Australian adults with intellectual disabilities described their local communities and conceptualised better inclusion. The results were collated and organised by applying an a...
Journal of Policy and Practice in …, 2011
This article explores issues associated with impaired decision-making capacity for Indigenous Australians. There is very little published on the subject of impaired decision-making capacity in Australia, particularly in relation to Indigenous people. To gain some insight into this subject, this article looks at some indicators of impaired decision-making capacity for Indigenous Australians such as rates of intellectual disability and mental illness. The Australian state-based Guardianship and Administration system -the legislative framework designed to provide for decision-making for people with impaired capacity-is briefly described before looking at the cultural relevance of this Western system and its constructs for Indigenous Australians. Future investigation should be directed at exploring existing and alternative strategies to support Indigenous Australians with impaired capacity and their carers.
Scandinavian Journal of Disability Research
People with intellectual disabilities are often regarded as subjects of care and support, rather than citizens with the same rights as others. This article aims to describe how young adults experience and perceive attitudes, treatment and participation in terms of the application process for daily activity/sheltered employment, as well as their transition into this activity and their first years' experience of it. The study was carried out in a middle-sized municipality in Sweden. Data were collected from 14 people with mild to moderate intellectual disabilities, aged between 21 and 23 years. The interviews were supported by the use of pictograms. Qualitative content analysis was used to analyse the data. The participants stated that they wished to be listened to as adults, and to participate in decisions about daily activity/sheltered employment. They wished to be treated and accepted as individuals, not according to their disabilities. They wanted to participate, and the opportunity to do so would require an accepting environment.
2021
Background People with intellectual disabilities have been historically excluded from decision-making processes. Previous literature indicates that increasing social participation may be an effective way to address this exclusion, but no systematic review of interventions designed to increase social participation of people with intellectual disabilities have been conducted. This study aims to identify and organize the factors associated with interventions that increase the social participation of people with intellectual disabilities and to provide a set of best of practices for future interventions. Methods/design The databases Web of Science, Scopus, LILACS, and PubMed will be searched for articles from January 2004 onwards; grey literature search will be identified through searching additional databases (such as Google Scholar and EBSCO databases). Randomized controlled trials, nonrandomized controlled trials, and controlled pre–post studies will be included. Noncontrolled pre–po...
Journal of Intellectual Disability Research, 2000
A growing body of literature has shed light into the process of conducting research with people with intellectual disabilities (ID). However, there is limited research on the feasibility of conducting research projects including various groups of people with ID, their supporters, and researchers. This paper reviews three studies conducted with these three groups of people in light of their feasibility, the knowledge generated, and their impact on individual and social change. This study used a reflective analysis focused on the main findings from the three studies, focus groups with people with ID and supporters who conducted the research, and interviews with people to whom the findings were disseminated. The analysis suggested that a team approach including active supporters and experienced researchers was critical to their feasibility. The studies generated knowledge particularly on the perspectives of people with ID on their rights. As a result of participation in these studies, some changes at the individual and social levels occurred, but these were relatively limited. The implications of this analysis for future research are discussed in the context of the implementation of the United Nations Convention on the Rights of Persons with Disabilities.