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Correspondence: Sam Arnold, Research Fellow and Psychologist, Centre for Developmental Disability Studies, PO Box 6, Ryde, NSW 1680, Australia. E-mail: [email protected]
“Getting a life”: Key transitions in the lives of people with intellectual disabilities
DOROTHY ATKINSON
The Open University, Milton Keynes, UK
This paper explores key transitions in the lives of people with intellectual disabilities (ID) who have moved from institutional care to community living. It is based on the narrative accounts of people with ID in the UK who have resettled in the community.
The author draws on her oral and life history research to trace the impact of changing policies and practices on people's lives and experiences. In particular, key transitions are examined through in-depth analysis of autobiographical accounts. Two or three stories are used to illustrate the way people with ID have been both passive and active participants in policy initiatives. These narratives are representative of many other life stories, which collectively are crucial to our understanding of the development of active citizenship and community engagement.
The paper explores these issues from the perspective of the people with ID themselves. From the stories these people are now telling, it is clear that their early years were characterised by loss (of family, home and community) and by separation and exclusion from society. However, changes in policy over the last 20–30 years have seen the closure of these institutions and a return of people with ID into society. Some of the stories of their later years suggest that this is when these individuals first actually began to “get a life”.
In addition to key life transitions, people with ID experienced enforced transitions – such as moving into and out of hospital and day centres – as ideas and practices changed. The transition out of hospital is a crucial one. It requires a transformation of feelings and experiences, so that people with ID finally feel able to reclaim control of their life outside the institution.
Correspondence: Dorothy Atkinson, Professor of Learning Disability, Faculty of Health and Social Care, The Open University, Walton Hall, Milton Keynes, MK7 6AA, Bucks, UK. E-mail: [email protected]
“Happy feet”: Keeping feet in tune
PAULA BURGESS & CHRIS ATKINS
Health Care Team, Disability Enterprises, Leura, Australia
People in the general population who have problems with their feet will seek treatment for the problem. People with intellectual disability and cerebral palsy often have significant orthopaedic abnormalities, with consequent foot problems. However they are unlikely to be able to look after their feet properly, and because of communication difficulties, they may also be unable to tell anyone how much their feet are hurting. Yet foot care for this group has been overlooked in the literature and practice.
This paper will describe the development and management of a foot care program for 30 people living in group homes. It will summarise the existing literature, outline the development of an assessment tool, the assessment process, and the findings. It will describe examples of resulting foot care plans and demonstrate changes in the health and happiness of feet that are “in tune”.
Correspondence: Ms. Paula Burgess, Endorsed Enrolled Nurse, Disability Enterprises, PO Box 7229, Leura, NSW 2780, Australia. E-mail: [email protected]
“What I'd Like You To Know About Me!” A resource for families of children and young people with disabilities
LIS BURTNIK1, VICTORIA WRIGHT1 & JAYNE LEHMANN2
1Life's for Living Inc., Australia, and 2Parent
“What I'd Like You To Know About Me!” is a web-based resource that enables children and young people with disabilities (up to the age of 18 years) and their families to control the content and flow of information to the people they interact with and the services that support them.
Extensive consultation with families (both in metropolitan and rural communities) and with service providers confirmed our initial premise that a resource such as this would be of value to both groups. The content and format of the resource was developed based on feedback received during these consultations.
Throughout their developmental years, children with disabilities require regular and repeated intervention at the medical/health, education and social levels. Families revealed that at every turn they are required to repeat key information about their child. They also reported having to confront issues such as negative attitudes, changes to close relationships, lack of information about “the system”, and lack of time, energy and resources since the birth of their child with a disability.
This resource aims to assist families in addressing some of these issues through the development of a profile of their child that celebrates their skills and abilities as a unique individual, while at the same time incorporating vital information about the child's support needs. The resource also enables families to regularly update this information and to tailor it to suit different situations.
The potential benefits of the resource lie in supporting families to view their child positively and to promote understanding within their support networks and the wider community.
Correspondence: Lis Burtnik, CEO, Life's for Living Inc., 985 South Road, Melrose Park, SA 5039, Australia. E-mail: [email protected]
Employment and people with intellectual disability in Australia and the United Kingdom
IAN DEMPSEY1 & JERRY FORD2
1University of Newcastle, Australia, and 2Flinders University, Adelaide, Australia
Despite a variety of legislative and policy approaches in industrialised countries, the employment of people with intellectual disability remains at very low levels in comparison to people without a disability, and has changed little in recent times.
This paper reports on measures in Australia and the United Kingdom that are designed to promote the inclusion of people with intellectual disability in the workforce. The effectiveness of these measures is analysed, barriers to increased participation in employment are identified, and recommendations are made on increasing the level of inclusion of people with intellectual disability in the workforce.
Correspondence: Dr Ian Dempsey, Special Education Centre, University of Newcastle, Callaghan, NSW 2308, Australia. E-mail: [email protected]
Heidigger, Dasein and disability: Rethinking what it means to be “human”
TERRI FEALY
Post-graduate student, LaTrobe University, Melbourne, Australia
The concept of citizenship is dependent on notions of what it means to be a human being. Within the western philosophical tradition, to be “human” is understood to mean being an able-bodied, rational and autonomous individual who is also an economically producing member of society. Suffice it to say that most people with intellectual disability do not fit this criterion. Consequently citizenship, and the inclusion it implies, would seem to be denied to these individuals. What options are therefore available to challenge this philosophical perspective?
Martin Heidegger, who was arguably one of the most influential philosophers of the 20th century, challenged this traditional western philosophical view. By using a phenomenological approach to address the ontological question of what it means to be “human”, he came up with an alternative understanding.
In this paper, I will outline Heidegger's theory and explore what his philosophy has to offer in terms of helping to make inclusion possible for people with disability. I will also consider new ways of thinking about what it means to be a human being. I will argue that the alternative perspective offered by Heidegger provides a foundation that could potentially lead to a society which is able to recognise and value disability as a central aspect of what it means to be “human”.
Correspondence: Ms Terri Fealy, 3A Stuart Street, The Basin, VIC 3154, Australia. E-mail: [email protected]
Actively engaging people with an intellectual disability in government advisory bodies: Findings from an Australian case study
PATSIE FRAWLEY
PhD candidate, LaTrobe University, Bundoora, Australia
For a number of years, government and service providers have invited people with intellectual disability (ID) to the “policy-making” and “consultation” table. However, little is known about this role from the perspective of the people with ID who participate.
This research grew out of the reflection by a person with ID that their participation on a government disability advisory body felt “tokenistic” and unsupported. Research in the related area of consumer participation involving people with ID has reported similar experiences (Concannon, Citation2005; Dearden-Phillips & Fountain, Citation2005; Simons, Citation2000; Stringfellow & Muscari, Citation2003). However there is a dearth of information about the broader citizen participation role that is emerging in the policy-making arena, and which is the focus of these government disability advisory bodies.
The paper presents a series of case studies which explore the experiences of nine people with ID who are members of six government disability advisory bodies at local, state and national government level in Australia. It discusses their different participation styles (presented as a typology of participation), the perspectives of those who support them (and who are their colleagues), and an analysis of the advisory bodies as participatory forums. Findings focus on what can be learnt from these case studies to inform the way government and service providers can actively engage people with ID in these roles in the future.
Correspondence: Patsie Frawley, PO Box 785, Ocean Grove, VIC 3226, Australia. E-mail: [email protected]
Cluster housing: What is its likely impact?
ROBERT L. JACKSON
Edith Cowan University, Australia
In many western countries, the 1970s and 1980s were characterised by a process of deinstitutionalisation, based on extensive evidence that institutions provided low quality accommodation, represented a poor response to individual needs, and resulted in a negative impact on skills and human rights. In the ensuing decades, the relocation from institutions to group homes and individual accommodation has not kept pace with demand, leading to regular calls for a greater response to the need for alternative accommodation. Increasingly this call has been for the provision of “clusters” where people with disability can live together in a “community of interest”.
In this paper, the cluster housing model is analysed using quality criteria from the PASSING evaluation manual (Wolfensberger & Thomas, Citation2007), to see if such a model is likely first to meet the needs of people with disability, and second, to provide a positive alternative to other accommodation options. From this analysis, it is evident that the great majority of the problems that existed with institutions are replicated in the cluster model (although some advantages over the institutional model do emerge). In particular, setting size and location, grouping size, and grouping composition are all likely to have a negative impact on competency development and the reputation of residents – both of which relate to areas of key need. On balance, the data from empirical studies and a logical analysis of the model lead to the conclusion that the model is likely to result in more harm than good for the individuals involved.
Correspondence: Dr Bob Jackson, Adjunct Associate Professor of Education, School of Education, Edith Cowan University, Australia. E-mail: [email protected]
The use of hippotherapy to support function and participation in children with disabilities
JANE LIDDIARD
Therapy Focus, Bentley, Western Australia
Hippotherapy is a recreational activity involving horses that may be used in the provision of therapy to children with disabilities. It stands out as a valuable adjunct to traditional therapy activities, due to the child's participation in a community setting, increased motivation, and the potential for ongoing enjoyment of a recreational activity. Hippotherapy may be utilised to develop underlying skills that can impact on a child's functional capacity and ultimately on the ability to participate in valued activities.
Four single-subject case studies were undertaken to explore the potential functional outcomes of using hippotherapy as a therapy treatment tool, with investigation into the impact of a hippotherapy-based treatment program on handwriting.
The children made positive gains towards goals relating to function for school activities and to participation in the community, as well as demonstrating improvements in underlying performance measures of balance, postural control and fine motor control for handwriting.
The results of these case studies demonstrate positive functional outcomes for the participants, and indicate that hippotherapy may be an effective treatment activity for developing underlying skills for handwriting, as well as for supporting increased participation in the community.
Correspondence: Jane Liddiard, Occupational Therapist, Therapy Focus, 5/1140 Albany Hwy, Bentley, WA 6102, Australia. E-mail: [email protected]
Dementia: Status of current supports and future service needs for people with intellectual disability in Australia
TREVOR R. PARMENTER1, ANTHONY HARMAN1 & MICHELE WIESE2
1Centre for Developmental Disability Studies, Sydney, and 2University of Sydney, Australia
The Centre for Developmental Disability Studies, University of Sydney, is building a research agenda to examine current supports and future service needs for people with intellectual disability who develop dementia. The developing research agenda has been purposefully aligned with the principles of both Ageing in Place and Quality of Life.
The first stage of this research agenda (carried out in 2007) has focused on the achievement of three outcomes: (i) a review and summary of international literature, (ii) a dialogue with national and international service providers and researchers, and (iii) completion of a nationwide survey identifying the range of currently available services as well as future service needs. Particular attention has been given to the support needs of the individual, and of their carers (both professional and family), throughout the whole dementia journey. The present paper reports on the status of these outcomes, and summarises best practice literature as a benchmark for comparison with available services.
Correspondence: Ms Michele Wiese, Research Fellow, Centre for Developmental Disability Studies, PO Box 6, Ryde, NSW 1680, Australia. E-mail: [email protected]
SPiT: A framework for promoting social inclusion and improved mental health for young people with disabilities
ELI RISTEVSKI & CAROLE BURKETT
Monash University, Australia
Individuals in our society are exposed to a vast range of technological products and innovations that are being constantly developed and modified to cater for consumer demands. Such technologies provide new opportunities for individual choices that were not previously available. Whether it is the desire for a new mobile phone, access to the internet, or software to explore musical interests, people are interacting with technology to explore their interests in ways once not possible. Young people with a disability also share this desire to be consumers of technology in its various forms.
“Social Participation in Technology” (SPiT) is a project designed to explore how technologically-based activities can promote social inclusion and improve mental health and wellbeing for young people with disabilities in two rural areas of Australia. The project is funded by the Victorian Health Promotion Foundation (VicHealth) and is conducted in partnership with Interchange Central Gippsland, Interchange Loddon Mallee, and Monash University. In Central Gippsland, a mentoring model is being used to promote technological skills acquisition and social engagement for young people aged 12–18 with Asperger syndrome and/or high-functioning autism. Interchange Loddon Mallee is creating opportunities for individuals aged 15–25 with a mild intellectual disability to become involved in regular group-based information and communication technology activities. Both models aim to establish independent supportive relationships, facilitate involvement in community and group activities, and enhance civic engagement. This presentation will discuss the application of VicHealth's mental health and wellbeing framework to the SPiT project, with particular focus on social inclusion as a key social and economic determinant of mental health. The presentation will also highlight methodological issues related to the research design.
Correspondence: Dr Eli Ristevski, Lecturer, Department of Rural and Indigenous Health, Monash University, PO Box 973, Moe, VIC 3825, Australia. E-mail: [email protected]
Celebrating our history: A brief snapshot of caring for people with intellectual disability in Western Australia: 1945–1992
DANIELA STEHLIK
Curtin University of Technology, Western Australia
The complete history of caring in Western Australia has yet to be written. The dynamics of everyday care are such that the focus tends to be on the here and now, and the lessons of history are often forgotten. Western Australia also has an amazing history of care for people with a disability – but this too has yet to be written.
This paper is based on research conducted between 1992 and 1997 as part of a PhD program of study, and draws on data from unique archives as well as personal interviews. It paints a story which celebrates the energy, commitment and daily grind of caring in Western Australia for people born with an intellectual disability between 1945 and 1960 (the so-called “baby boomers”) – a cohort that few expected to live a full life or to make a civic contribution. The focus of the research was on the carers themselves – the parents – and their lifelong journey of caring. The paper argues that having a sense of history is an important aspect of being human. We are all searching for our place in the world. This small contribution provides a background and a context to current care, in which the historical experiences and life stories of previous generations are often overlooked.
Correspondence: Professor Daniela Stehlik, Director, Alcoa Research Centre for Stronger Communities, Curtin University of Technology, GPO Box U1987, Perth, WA 6845, Australia. E-mail: [email protected]
“Voices for Change”: Participatory action research in partnership with young adults with Down syndrome in New South Wales, Australia
MIRIAM STEVENSON*
Post-graduate student, University of Sydney, Australia
*This paper was co-presented by James Vantol (Team Voice) and Danielle Pham (Project Participant), two young adults with Down syndrome.
When consulted, young adults with Down syndrome state that they want to “do stuff in our life like everybody else – like getting a job, moving out, seeing friends, going out, having a relationship and helping others”.
The “Voices for Change” research project actively engages young adults aged 18–25 with Down syndrome in participatory action research (PAR) to discover how the circles of support model can be utilised to help them realise their personal goals. This project is highly innovative in its engagement with these young adults at an early stage in their lives, and explores such concepts as community capacity building, youth participation in decision-making, self-advocacy and empowerment, equity, community contribution, and sustainable outcomes. The project aims to bring together a “team of champions” around each participant, with the purpose of identifying barriers faced by the individual and together finding ways of overcoming them.
The research steering group includes young people with Down syndrome, team coaches, parents, volunteers and the project reference group, who together are responsible for identifying key areas for investigation, as well as for planning and overseeing the research. It is envisaged that via this process, participants will gain research skills in areas such as data collection and analysis, presentation of findings, and co-authorship of publications.
The project has recently received funding to produce a DVD and a manual to share its findings with other community groups.
Expected research outcomes are:
to evaluate the existing circles of support model;
to develop and evaluate an enhanced circles of support model;
to make recommendations regarding the effectiveness of the end model and to produce training and guidance materials with the aim of providing assistance to other groups in developing their own projects.
Correspondence: Miriam Stevenson, Up, Up and Away/Voices for Change Project Coordinator, Down Syndrome NSW, PO Box 2356, North Parramatta, NSW 1750, Australia. E-mail: [email protected] or [email protected]
Issues and complexities of end-of-life care for people with intellectual disabilities
MICHELE WIESE, SUSAN BALANDIN & ROGER J. STANCLIFFE
University of Sydney, Australia
In the context of a growing ageing population of people with disability, and a parallel strong shift towards the principles of Ageing in Place, Choice, and Quality of Life for this group, end-of-life care remains a largely unacknowledged subject. A number of sensitive and complex issues surround the attainment of a dignified “dying at home” experience, all of which continue to be neglected areas of research, and ultimately, practice. In Australia and many other parts of the world, there appears to be a lack of clarity surrounding guidelines for end-of-life care for people with disability, thus potentially jeopardising the chance of a respectful and valued dying experience for these individuals and their carers.
The current paper details the issues that require consideration, from both a research and a practical perspective, with a view to developing guidelines for managing planned care at home for those who choose it, right up until the point of death.
Correspondence: Ms. Michele Wiese, Research Fellow, Centre for Developmental Disability Studies, PO Box 6, Ryde, NSW, 1680, Australia. E-mail: [email protected]
Measuring the outcomes of inclusive communities
ERIN WILSON1,2, NICK HAGILIASSIS1, KELLI NICOLA-RICHMOND1, ANNE MACKAY1 & ROBERT CAMPAIN1
1Scope (Vic), Australia, and 2Deakin University, Australia
The building of inclusive communities and the promotion of participation by people with a disability are consistent goals of government and service agencies. However to date, there has been limited data available measuring the outcomes of the work of these agencies in achieving inclusion.
This paper will summarise the first stages of a project by Scope (Vic) aimed at developing a framework for outcomes measurement which draws on the concepts of citizenship and agency across a range of life domains. The paper will profile data collection instruments now under trial and share the results to date. Specifically, the paper will review two research instruments that are currently under development: one targeted at identifying the outcomes of interventions by therapists and psychologists related to person-centred goals; and the other aimed at identifying the impact of services or interventions across a wide range of life domains for the person with a disability or their family.
Correspondence: Dr Erin Wilson, Senior Lecturer, School of Health and Social Development, Deakin University, 221 Burwood Highway, Burwood, VIC 3125, Australia. E-mail: [email protected]