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This book offers an empowering approach to working with people with an acquired brain injury (ABI) based upon the views and perspectives of people with ABI themselves. Drawing upon Christine Durham's own ABI experience and Paul Ramcharan's engagement in disability research over a quarter of a century, this volume gives voice to 36 participants with ABI, as well as carers and other professionals from both urban and rural areas. This unique perspective provides a long-needed, empathic alternative to the deficit-based model of ABI that dominates medical literature and existing rehabilitation models. In Insight into Acquired Brain Injury, the authors use educational and learning principles together with Durham's extensive archive of experiential data to offer a reframing of the nature and experience of ABI and relevant a set of practical, real-world tools for practitioners. These ready-to-adopt-and-adapt scripts, guided interviews, research checklists, thinking tools and other innovative techniques are designed to engage with people and colleagues about brain injury as a means of supporting them to feel and fare better. With compassion and first-hand awareness, Insight into Acquired Brain Injury provides a much-needed perspective that deepens current understanding and translates the complicated life-worlds of people living with ABI in order to motivate, empower and increase their participation

AbstractThe role of financial counsellors as providers of information, support and advocacy for those in financial difficulty is a well established mechanism in the mainstream welfare landscape in Australia. In general, the role of financial counsellors is in helping people alleviate or resolve their financial difficulties through improvement of their financial literacy. It is recognised as an important component of policy responses to assist low‐income households and individuals in financial stress. The use of financial counsellors for older persons (i.e., those aged 65+ years), however, appears to be underutilised. Financial hardship and abuse of older persons within our community are becoming key issues as the population of Australia "ages". Existing evidence also suggests that service providers alone do not have adequate skills to address these issues. This paper firstly examines the development of financial counselling in Australia. It then examines the newly emerging role of financial counselling in supporting older persons in addressing barriers to financial literacy and then in navigating the complex landscape of aged care service provision. The current financialisation, marketisation and complexities of consumer‐directed care are identified as key contextual factors. The paper will then discuss an evaluation study of the provision of financial counselling to the older person population designed to support financial hardship and navigation of the complex aged care services system. The findings of the paper are based on an evaluation of the Financial Consumer Rights Council (FCRC), Victoria: Dignity and Debt Financial Difficulty and Getting Older initiative. This pilot initiative included older persons from both community‐based and aged care residential facilities in one regional area of Victoria. The initiative, conducted over 2016, was designed to assess the effectiveness of one‐on‐one financial counselling sessions with older persons that provided consumer advocacy and information about support services and entitlements (including hardship protections) associated with ageing. The evaluation found that the provision of financial counselling to the older person population could be a key mechanism in improving overall financial literacy, avoiding periods of financial hardship and in maintaining financial well‐being, quality of life and positive ageing. Findings also demonstrated a need for an expanded outreach financial counselling model to better service older persons in more isolated living environments and/or with mobility impairments living in the community, and the potential to situate offices of financial counsellors within medical centres (a space often visited by the ageing population), to co‐situate financial health check‐ups as an overall element of health and well‐being. As such, financial counselling was viewed as well placed to support older persons in improvement of financial literacy and in supporting navigation of the increasingly complex marketised and consumer‐directed care (CDC) landscape of aged care service provision in Australia.

The aim of the present paper is to distil findings from research into the views and experiences of families of people with intellectual disabilities (IDs). It draws from the authors' report on the views and experiences of users and carers, the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, which was commissioned by the Department of Health, and was intended to inform some of the thinking behind Valuing People and the associated research programme. The present paper traces the development and scope of research on family carers in relation to the personal and psychological experience of care as well as in relation to receipt of services. Theoretical and methodological gaps in the literature are outlined. Social systems theory is proposed as a means of addressing the requirements of a future research agenda about family care.

The present paper presents a descriptive summary of the views and experiences of people with intellectual disabilities (IDs) as they have been represented in research and other literature. The authors develop further the DoH Research Initiative on Learning Disability: Proposal for a Research Review on the Views and Experiences of Users and Carers, a review report commissioned by the Department of Health on the views and experiences of users and family carers focusing on the ways in which research might contribute to policy and practice. The literature review of user views and experiences produced three broad categories: (1) 'testaments of life', which are mainly ethnographies and life histories; (2) 'user movement media' produced in an accessible format for people with IDs or by people with IDs themselves; and (3) 'research based studies' in their varying forms. It is demonstrated that no single approach is able to encompass all the interests of knowledge production, policy planning, and action or practice on its own. Some of the methodological issues associated with these gaps are more fully discussed. A more coordinated and broad‐based research approach to user views and experiences is advocated.

Demonstrating the scope and diversity of 'caring', the contributors highlight the positive aspects of caring and the interdependence of many caring relationships but also broach the sensitive and complex subject of 'poor' care and the importance of identifying and meeting the needs of 'hidden carers'

AbstractIn 2022, a new Federal Labor government introduced an NDIA Act amendment and initiatives that indicate a reorientation to partnership working and integration of co‐design principles. "Partnership working" reflects collaborative aspirations where parties commit to trust, shared goals and respect for diverse knowledges and experiences. The National Disability Insurance Scheme (NDIS) espouses a partnership approach and rights‐based values, yet the neoliberal emphasis on individual choice and marketisation within a social insurance model can privilege certain voices and produce adversarial processes and dynamics. Our focus group research with disability leaders, family carers and disability service professionals explored experiences in the NDIS planning phase with a focus on the extent to which partnership principles operated in practice. Our findings suggest embedded paradoxes; time and resources are required to build the trust and relationships central to interpersonal partnerships between individuals, carers and services but are undermined by organisational and structural factors such as workload pressures, administrative burden and adversarial practices produced in a cost containment context. Tensions in partnership working must also negotiate carers' workload and responsibilities with the autonomy of people with disability. We argue that partnership working is difficult to achieve where structural and systemic limitations and assumptions influence everyday practices. Partnership must operate from empowerment and relational, rather than transactional, principles if genuine participatory and inclusive practice is to be achieved.

The dynamics of inclusion and exclusion for people with disabilities and the places in which they live are being challenged in Australia with the transition to the National Disability Insurance Scheme. This paper reports on the experiences of a place-based and participatory action research project in regional Tasmania which sought to co-create citizenship opportunities with co-researchers living with disability. We report on our experience of negotiating this ambitious and emergent project through the uncertain and shifting terrain of the contemporary neoliberal policy and service context. We highlight the rich gains as well as the significant relational, contextual and procedural challenges of operationalising and staying true to bottom up and strengths-based community development principles. Key learnings relate to risks of creating liminal spaces for community action, about power and authority, and about the skills, resources and labour needed to unearth and mobilise individual and community strengths. We argue that there remains a significant tension between the aspirations of collective action and contemporary services and policy structures that reproduce liminality, silent positioning and place denial. This research challenges traditional disability centric notions of inclusion and place and has implications for the NDIS, for policies at risk of reproducing disabling dynamics, for service innovation and collaboration and for all social workers and others working to develop more inclusive communities.

BackgroundThe inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour.MethodA comprehensive review of the peer reviewed literature and key texts was undertaken to more clearly conceptualize inclusive research and identify the issues associated with ways of approaching it.FindingThree approaches to inclusive research were identified: advisory, leading and controlling, and collaborative group. Using the literature and the authors' own experience, each approach is illustrated and discussed.ConclusionsA clearer conceptual framework is developed to guide researchers and administrators as they consider inclusive research and its feasibility to particular research questions. A strong self‐advocacy movement is identified as one of the conditions necessary for inclusive research to flourish.Accessible AbstractBackgroundOrganisations including government that fund research about people with an intellectual disability in the UK and Australia say it is important that people with an intellectual disability are involved in planning and doing research that is about them; this is called inclusive research. Some people have written about what they have done but not enough has been written and shared about the different ways of doing inclusive research.MethodThe people who wrote this paper looked at all the literature about ways of doing inclusive research and reflected on the way they had worked with a group of self advocates in writing about their history.ResultsThere are three main ways of doing inclusive research; (i) Where people with an intellectual disability give advice about what to do; (ii) Where people with an intellectual disability lead and control research (iii) Where people with and without intellectual disability work together as a group with different jobs based on their different interests and skills.ConclusionsIn the past there has been an idea that there is only one way to do inclusive research. This paper talks about the advantages and disadvantages of different ways of doing inclusive research, and when you might choose one way rather than another.

BackgroundFunding bodies in Australia and the United Kingdom require research on issues that affect the lives of people with intellectual disability to be inclusive. Debate continues about the nature and benefits of inclusive research, which has become an umbrella term encompassing a broad spectrum of approaches.MethodThis study proposes one method of inclusive research, the 'collaborative group' approach. It examines the processes used to conduct a study involving academics and self‐advocates, presenting findings derived from an inductive analysis of field note data, interview and meeting transcripts.ResultsFive components are identified: shared and distinct purposes of participants equally valued, shared involvement and distinct contributions equally valued, flexible, adapted research methods, working as a group with trusting relationships and dispersed power, and scaffolding for inclusion.ConclusionsThis collaborative group method potentially results in better research than either academics or self‐advocates could achieve alone and has multiple knowledge outcomes with differing accessibility and complexity.Accessible AbstractBackgroundWhen people with an intellectual disability and researchers from universities or other organisations do research together it is called inclusive research. People have worked together on research for a long time but there are still some questions about why we should do it and the best way to do it.MethodThis paper talks about one way of doing inclusive research that the people who wrote the paper call 'collaborative group approach'. They did a big project with a group of people with an intellectual disability and talked and thought a lot about what they were doing. What they found out. There are five parts to working this way; (i) Having some of the same and some different reasons for doing the research (ii) Doing some things together and doing some things apart (iii) Being able to change things as you go so people can do what they want to do and are good at. (iv) Knowing each other well and being able to work together equally. (v) Thinking about the way you work all the time to make sure people are doing what they are good at and what they want to do.ConclusionIf people work this way it might lead to better research and understanding about the lives of people with an intellectual disability.

Aim  This paper seeks to illumine how families with children and adult members with intellectual disabilities manage to manifest a buoyant and durable capacity over time. It is therefore concerned centrally with the idea of resilience.Method  Drawing from diverse theoretical literatures from child development and protection and gerontology, the paper begins with a review of constructions of resilience. In an attempt to assess where there seems to be support for resilience in families, the core of the paper tests empirical evidence about positive experiences of families supporting children and adults with intellectual disabilities against the theoretical literature on resilience.Result and Conclusions  The findings are used to suggest conditions under which resilience is produced and maintained, and to identify emergent elements of a psycho‐social model of resilience in families with children and adult members with intellectual disabilities.

AbstractA policy norm enshrined in the United Nations Convention on the Rights of Persons with Disabilities 2006 reflected in Australia's National Disability Insurance Scheme is for people with psychosocial and other disabilities to have choice and control over their lives and not to live in institutional settings. In Australia, private congregate care settings remain in most states and territories, yet are not recognised as institutional settings in policy or academic literature. This recognition is long overdue and is the focus of this article. The article reports on findings from an ethnographic study in a type of private congregate care setting in Victoria—supported residential services (SRS). Adopting criteria adopted by Davies (1989) from Goffman's notion of "total institution," observations and interviews with 12 residents with psychosocial disability are analysed. These settings are found to meet many of the criteria for total institution. This finding has two critical implications for policy and practice. First, the extent to which institutionalisation in SRS impacts on the choices residents are able to make. Second, the extent to which independent support and advocacy are needed to ensure residents can exercise choice and control over their lives to find pathways out of SRS.