ORCID Profile
0000-0002-8800-5660
Current Organisation
Deakin University
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Research Topics
In Research Link Australia (RLA), "Research Topics" refer to ANZSRC FOR and SEO codes. These topics are either sourced from ANZSRC FOR and SEO codes listed in researchers' related grants or generated by a large language model (LLM) based on their publications.
Top 5 Research Topics
ANZSRC Field of Research (FoR)
Care for Disabled | Aboriginal and Torres Strait Islander Health | Public Health and Health Services | Gender Specific Studies | Public Health and Health Services not elsewhere classified | Other Studies in Human Society |
ANZSRC Socio-Economic Objective (SEO)
Aboriginal and Torres Strait Islander Health - Health System Performance (incl. Effectiveness of Interventions) | Gender and Sexualities | Visual Communication | Health Inequalities
Related Links
Publications
Women With Cerebral Palsy and Breast Cancer Screening by Mammography
Publisher: Elsevier BV
Date: 02-2006
DOI: 10.1016/J.APMR.2005.09.020
Abstract: Women with cerebral palsy and breast cancer screening by mammography. We emphasize the need to identify specific barriers to participation in breast cancer screening by mammography experienced by women with cerebral palsy (CP). Mammography screening has been found to reduce mortality rates by 30%, but women with disabilities such as CP underuse this important preventive medicine facility, potentially leading to delay in diagnosis of breast cancer and a less favorable prognosis. Because equity in health care is compromised through underutilization by these women, barriers to participation and successful outcomes must be investigated. Barriers such as appropriate information, transport, and assistance prevent women with CP from getting to the facility. Once there, communication difficulties, physical limitations, psychologic barriers, and staff attitudes become barriers to a successful outcome. Education for health personnel as well as adaptation of the mammographic technique to suit the physical limitations of women with CP are critical to increasing participation and ensuring successful outcomes. Importantly, there is a need to identify women for whom having a mammogram is not an option and for whom alternative breast screening methods should be provided.
Intersectional disadvantage: Exploring differences between aboriginal and non-aboriginal parents with intellectual disability in the New South Wales child protection system
Publisher: Informa UK Limited
Date: 09-10-2018
The development of a framework for high-quality, sustainable and accessible rural private therapy under the Australian National Disability Insurance Scheme
Publisher: Informa UK Limited
Date: 08-01-2016
DOI: 10.3109/09638288.2015.1129452
Abstract: The Australian National Disability Insurance Scheme (NDIS) will provide people with in idual funding with which to purchase services such as therapy from private providers. This study developed a framework to support rural private therapists to meet the anticipated increase in demand. The study consisted of three stages utilizing focus groups, interviews and an online expert panel. Participants included private therapists delivering services in rural New South Wales (n = 28), disability service users (n = 9) and key representatives from a range of relevant consumer and service organizations (n = 16). We conducted a thematic analysis of focus groups and interview data and developed a draft framework which was subsequently refined based on feedback from stakeholders. The framework highlights the need for a 'rural-proofed' policy context in which service users, therapists and communities engage collaboratively in a therapy pathway. This collaborative engagement is supported by enablers, including networks, resources and processes which are influenced by the drivers of time, cost, opportunity and motivation. The framework identifies factors that will facilitate delivery of high-quality, sustainable, in idualized private therapy services for people with a disability in rural Australia under the NDIS and emphasizes the need to reconceptualize the nature of private therapy service delivery. Implications for Rehabilitation Rural private therapists need upskilling to work with in iduals with disability who have in idual funding such as that provided by the Australian National Disability Insurance Scheme. Therapists working in rural communities need to consider alternative ways of delivering therapy to in iduals with disability beyond the traditional one-on-one therapy models. Rural private therapists need support to work collaboratively with in iduals with disability and the local community. Rural private therapists should harness locally available and broader networks, resources and processes to meet the needs and goals of in iduals with disability.
Unpacking the complexity of planning with persons with cognitive disability and complex support needs
Publisher: Wiley
Date: 03-07-2018
DOI: 10.1111/JAR.12381
Abstract: Planners will engage with people with cognitive disability and complex support needs in the Australian National Disability Insurance Scheme, but the specific skills needed to build sustainable plans with this group are not yet known. A qualitative study was conducted to explore the barriers and facilitators to planning with people with cognitive disability and complex support needs. Focus groups were held with 99 planning practitioners across metropolitan and regional locations in New South Wales, Australia. Thematic analysis showed planners need to build a partnership based on mutual trust and respect with a person with complex support needs and harness a range of skills to respond to in idual support needs, learning capacity, systemic hurdles and life challenges. Planner skills can be used to address barriers to planning for people with cognitive disability and complex support needs. Gaining skills took professional support and personal commitment.
What is talked about? Community living staff experiences of talking with older people with intellectual disability about dying and death
Publisher: Wiley
Date: 21-07-2014
DOI: 10.1111/JIR.12065
Abstract: The aim of this study was to explore what community living staff talked about and did with people with intellectual disability (ID) to assist them to understand dying and death. Guided by grounded theory methodology, focus groups and one-to-one interviews were conducted with 22 staff who had talked about any topic relating to dying and death with their clients. There was little evidence that staff talked with, or did things with clients to assist understanding of the end of life, both prior to and after a death. Prior to death staff assisted clients in a limited way to understand about determining wishes in preparation for death, and what dying looks like by observance of its passage. Following a death staff offered limited assistance to clients to understand the immutability of death, and how the dead can be honoured with ritual, and remembered. The findings have implications for why people with ID have only partial understanding of the end of life, the staff skills required to support clients' understanding, and when conversations about the end of life should occur.
Representation of people with intellectual disability in Australian mental health policy
Publisher: SAGE Publications
Date: 13-05-2018
Policy Development and Implementation for Disability Services in Rural New South Wales, Australia
Publisher: Wiley
Date: 09-2014
DOI: 10.1111/JPPI.12088
A framework for interconnected benefits of peer support for family members of people with disability
Publisher: Wiley
Date: 04-09-2021
DOI: 10.1002/AJS4.130
Abstract: Peer support describes the process of giving and receiving support between people who share similar life experiences. It is commonly used by family members of people with disability, with positive outcomes. However, existing research tends to assume it has separate and discrete benefits, neglecting the subtleties of how the different outcomes may be interconnected and mutually reinforcing. An account of these broader connections between benefits is needed. Drawing on Australian data from 24 parents and siblings of people with disability, this paper identifies benefits of peer support, including exchange of information, benefiting from experience and problem solving motivation/encouragement and self‐confidence ersonal development social interaction and friendship understanding, perspective and belonging/community working together for change and resilience and well‐being. The paper then proposes a framework to understand these benefits in an interconnected manner, where they are either transactional (giving and receiving practical and social‐emotional resources) or integrative (assimilating what is given and received into one's own experience and actions). The implications for practice and for families are discussed.
The need for new models for delivery of therapy intervention to people with a disability in rural and remote areas of Australia
Publisher: Informa UK Limited
Date: 03-01-2012
Addressing the barriers to accessing therapy services in rural and remote areas
Publisher: Informa UK Limited
Date: 26-09-2013
DOI: 10.3109/09638288.2012.720346
Abstract: Throughout the world, people with a disability who live in rural and remote areas experience difficulty accessing a range of community-based services including speech-, physio- and occupational therapy. This paper draws on information gathered from carers and adults with a disability living in a rural area in New South Wales (NSW), Australia to determine the extent to which people living in rural areas may receive a person-centred therapy service. As part of a larger study in rural NSW into the delivery of therapy services, focus groups and in idual interviews were conducted with 78 carers and 10 adults with a disability. Data were analysed using constant comparison and thematic analysis. Three related themes emerged: (i) travelling to access therapy (ii) waiting a long time to get therapy and (iii) limited access to therapy past early childhood. The themes overlaid the problems of recruiting and retaining sufficient therapists to work in rural areas. Community-based rehabilitation principles offer possibilities for increasing person-centred therapy services. We propose a person-centred and place-based approach that builds on existing service delivery models in the region and involves four inter-related strategies aimed at reducing travel and waiting times and with applicability across the life course. Therapy service delivery in rural and remote areas requires: Place-based and person centred strategies to build local capacity in communities. Responsive outreach programs working with in iduals and local communities. Recognition of the need to support families who must travel to access remotely located specialist services. Innovative use of technology to supplement and enhance service delivery.
Policy Context for Transitions to Adulthood Experienced by Young People with Complex Support Needs: Australian Federal and State Perspectives
Publisher: Informa UK Limited
Date: 20-10-2023
Living the life I want: A framework for planning engagement with people with intellectual disability and complex support needs
Publisher: Wiley
Date: 24-10-2019
DOI: 10.1111/JAR.12538
Abstract: Self-determination involves autonomy, agency, choice and control. This study investigated how these aspects of self-determination relate to engaging people with intellectual disability and complex support needs in setting goals and making plans. Body mapping was used to understand the planning experiences of 30 adults with intellectual disability and complex support needs. Each participant created two body maps using a guided group-based process. Visual and text data were thematically analysed and a framework for planning engagement developed. The framework identifies the centrality of having a well-developed sense of self which includes insight, motivation and agency, and which is shaped by contextual barriers and facilitators and influenced by helpful and unhelpful support. A well-developed sense of self and ability to harness resources and people is fundamental to the ability of in iduals with intellectual disability and complex support needs articulating goals, identifying aspirations, and attaining valued outcomes.
‘Testing it in the real world’: Using action research to apply a conceptual framework to social care planning
Publisher: SAGE Publications
Date: 27-02-2021
Abstract: This paper outlines an action research methodology used to create a practice-informed resource for social care in Australia. Practitioners and researchers worked together to develop, test and refine a process to engage people with cognitive disability and complex support needs in person-centred planning. The planning approach, which calls for planners to reflect on their own skills and attitudes as well as the unique needs of an in idual, has helped to improve practice in a number of fields and locations in Australia. The process marks a substantive practice shift towards recognition of planning as fundamentally relational in nature. This paper reflects on the process of action research which we describe as similarly relational and potentially transformative of the relations between researchers and practitioners. Working within a knowledge translation paradigm we show how reflexivity within the researcher ractitioner relationship in action research calls for a substantive shift in perspective by researchers to effectively work within the complex contexts of practitioners themselves. In taking this opportunity in our research practice, we identify the potential for a fundamentally different praxis to emerge, one more deeply grounded in the conceptual, political and practical relations between researchers, practitioners and those whose lives they seek to enhance.
Local therapy facilitators working with children with developmental delay in rural and remote areas of western New South Wales, Australia: The 'Outback' service delivery model: The
Publisher: Wiley
Date: 10-2014
Key characteristics of the refugee journey for Iraqi and Syrian family members who support their children or siblings with disability
Publisher: Informa UK Limited
Date: 09-04-2023
Factors affecting retention of allied health professionals working with people with disability in rural New South Wales, Australia: Discrete choice experiment questionnaire development
Publisher: Springer Science and Business Media LLC
Date: 21-04-2015
Women and Stigma: A Protocol for Understanding Intersections of Experience through Body Mapping
Publisher: MDPI AG
Date: 28-07-2020
Abstract: This paper outlines a research and dissemination protocol to be undertaken with specific groups of marginalised women in Australia. Women impacted by significant mental distress, disability, or refugee status are among society’s most vulnerable and disenfranchised groups. They can experience significant social exclusion, marginalisation and stigma, associated with reduced help seeking, deprivation of dignity and human rights, and threats to health, well-being and quality of life. Previous research has assessed the experiences of discrete groups of women but has to date failed to consider mental health–refugee–disability intersections and overlaps in experience. Using body mapping, this research applies an intersectional approach to identify how women impacted by significant mental distress, disability, and refugee status negotiate stigma and marginalisation. Findings on strategies to cope with, negotiate and resist stigmatised identities will inform health policy and yield targeted interventions informed by much-needed insights on women’s embodied experience of stigma. The women’s body maps will be exhibited publicly as part of an integrated knowledge translation strategy. The aim is to promote and increase sensitivity and empathy among practitioners and policy makers, strengthening the basis for social policy deliberation.
Older disabled workers' perceptions of volunteering
Publisher: Informa UK Limited
Date: 12-2006
Claiming space: photovoice, identity, inclusion and the work of disability
Publisher: Informa UK Limited
Date: 24-05-2023
“They need to be able to have walked in our shoes”: What people with intellectual disability say about National Disability Insurance Scheme planning
Publisher: Informa UK Limited
Date: 08-02-2019
Current Representation of People With Intellectual Disability in Australian Mental Health Policy: The Need for Inclusive Policy Development
Publisher: Wiley
Date: 13-03-2018
DOI: 10.1111/JPPI.12239
A systematic review of the characteristics of programs and services resulting in open employment outcomes for young people with an intellectual disability
Publisher: INPLASY - International Platform of Registered Systematic Review and Meta-analysis Protocols
Date: 23-09-2023
The dynamics of support over time in the intentional support networks of nine people with intellectual disability
Publisher: Informa UK Limited
Date: 10-2013
The role of microboards in enhancing quality of life for children with intellectual disability and their families
Publisher: Wiley
Date: 02-10-2023
DOI: 10.1111/JPPI.12474
The Future of Disability Research in Australia: Protocol for a Multiphase Research Agenda–Setting Study
Publisher: JMIR Publications Inc.
Date: 03-01-2022
DOI: 10.2196/31126
Abstract: For people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. The aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda–setting exercise conducted in 2021 in Australia. The research agenda–setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders—people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey a consultation process undertaken through the government and nongovernment sector and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. We have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as research papers) and 225 publicly available reports (referred to as research reports) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. This multi-method research agenda–setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. DERR1-10.2196/31126
Deliberative Dialogues Between Policy Makers and Researchers in Canada and Australia
Publisher: SAGE Publications
Date: 09-05-2017
Abstract: Knowledge translation (KT) and implementation science are growing fields in Canada, Australia, and worldwide. Many audiences are targeted as KT knowledge users—policy makers represent one key knowledge user in the health care field. The need for policy makers to understand research and for researchers to understand policy processes is commonly recognized. There is also increasing interest in health policy that focuses on KT as a framework for understanding the use of evidence and, in particular, describing the influence of research on policy along with concepts of coproduction and user involvement. With relationship building central to successful evidence-informed policy, this article explores deliberative dialogue as a potential approach to enhancing KT. It describes two ex les of researcher efforts to cultivate relationships and contacts with policy and decision makers via such dialogues and illustrates the inherent opportunities and challenges of doing so.
'If and when?': The beliefs and experiences of community living staff in supporting older people with intellectual disability to know about dying
Publisher: Wiley
Date: 14-09-2013
DOI: 10.1111/J.1365-2788.2012.01593.X
Abstract: The aim of this study was to explore the way in which community living staff engaged with people with intellectual disability (ID) about dying and death. Guided by grounded theory methodology, focus groups and in idual interviews were conducted with staff who had either no experience with client death, experience of a client sudden death, or a client death experience which was pre-dated by a period of end-of-life care. While in principle, staff unanimously supported the belief that people with ID should know about dying, there was limited in-practice engagement with clients about the topic. Engagement varied according to staff experience, client capacity to understand and the nature of the 'opportunity' to engage. Four 'opportunities' were identified: 'when family die', 'incidental opportunities', 'when clients live with someone who is dying' and 'when a client is dying'. Despite limited engagement by staff, people with ID are regularly exposed to dying and death. People with ID have a fundamental right to know about dying and death. Sophisticated staff skills are required to ensure that people with ID can meaningfully engage with end-of-life issues as opportunities arise.
Environmental and systemic challenges to delivering services for Aboriginal adults with a disability in Central Australia
Publisher: Informa UK Limited
Date: 23-02-2020
Engaged advocacy: a framework for inclusion of people from refugee and asylum-seeking backgrounds in disability policy
Publisher: Edward Elgar Publishing
Date: 08-06-2023
Who are they and what do they do? Profile of allied health professionals working with people with disabilities in rural and remote New South Wales
Publisher: Wiley
Date: 07-07-2015
DOI: 10.1111/AJR.12163
Abstract: To explore the characteristics of allied health professionals (AHPs) working with people with disabilities in western New South Wales (NSW). A cross-sectional survey was conducted using an online questionnaire. Rural western NSW. AHPs including physiotherapists, speech pathologists, occupational therapists and psychologists ('therapists') working with people with disabilities. AHPs characteristics. The majority of respondents were women (94%), with a mean age of 39 years average time since qualification was 14 years mean years in current position was 6. Most worked with people with a lifelong disability. Two thirds reported that family ties kept them in rural areas 71% grew up in a rural/remote area. Most participants (94%) enjoyed the rural lifestyle, and 84% reported opportunities for social interaction as good or very good. Participants with dependent children were less likely to cease working in western NSW within 5 years than those without dependent children (P < 0.05). The characteristics of therapists working with people with disabilities in rural NSW were identified. Overall working, but also social conditions and community attachment were important for this group. Understanding the workforce will contribute to policy development to meet increasing demands for therapy services.
The Psychosocial Impact on Siblings of People with Lifelong Physical Disability: A Review of the Literature
Publisher: Springer Science and Business Media LLC
Date: 07-06-2008
Post‐parental care: a new generation of sibling‐carers
Publisher: Informa UK Limited
Date: 06-2004
Recruitment and retention of allied health professionals in the disability sector in rural and remote New South Wales, Australia
Publisher: Informa UK Limited
Date: 26-11-2014
Protocol Paper: Conducting Life History Interviews to Explore the Journeys of People with Disability from Syrian and Iraqi Refugee Backgrounds Settling in Australia
Publisher: MDPI AG
Date: 28-07-2021
Abstract: This paper outlines a research protocol to be undertaken with people with disability from Syrian and Iraqi refugee backgrounds settling in Australia. Since 2012, the numbers of people with disability arriving from these countries has increased with limited understanding about the impact of their refugee journeys on their settlement. The aim of this small-scale exploratory study is to learn about the journeys made by people with disability from Syrian and Iraqi refugee backgrounds from their countries of origin, through transit countries, to Australia in order to understand the impact of these journeys on inclusion and participation in Australian society. This participatory action research study employs a bilingual co-researcher with disability from a Syrian background to conduct life history interviews with up to five participants. Participants will recount their journeys with a focus on the impact of their disability on this experience. The study design is informed by BenEzer and Zetter’s 2014 seminal paper on the importance of the refugee journey to settlement. This study has the potential to foreground the voices and experiences of people with disability from refugee backgrounds who are often absent, silenced or excluded in research and, in so doing, hopefully impact Australian refugee policy.
Importance of Land, family and culture for a good life: Remote Aboriginal people with disability and carers
Publisher: Wiley
Date: 23-12-2020
DOI: 10.1002/AJS4.96
Access to therapy services for people with disability in rural Australia: a carers’ perspective
Publisher: Hindawi Limited
Date: 17-10-2017
DOI: 10.1111/HSC.12399
Abstract: In Australia and around the world, people with disability and their carers living in rural areas face additional challenges compared to their urban-dwelling counterparts. This cross-sectional study explored current access to therapy services for people with disability living in western New South Wales as reported by their primary carers. Data were collected using an online and paper survey distributed to carers, from December 2012 until June 2013. Information was sought about the carers, the person they care for, access to physiotherapy, speech pathology, occupational therapy and psychology services. A total of 166 carers participated. Respondents were mostly the carers of a son or daughter (83.6%) , the person they care for had an average age of 17.6 years (range 1-69 years) and more than half were males (56%). The majority of people with disability (73.5%) had received therapy services in the last 2 years. Waiting time and distance travelled to access physiotherapy, speech and occupational therapy services varied. People with disability had to wait an average of 6.6 months to receive speech pathology and had to travel an average of 2.6 hours to receive physiotherapy. The main provider of all services was the specialist disability government department, except for psychology, which is mainly provided in the private sector. From the carers' perspective, availability and accessibility to services are limited. Carers noted that availability of services was more restricted once people with disability reached adulthood. Lack of choice and frustration with the lack of availability of specialist disability services was reported frequently. Carers believed that timely allied health intervention prevented the development of more severe or complicated conditions that had a greater impact on carers, families, communities and the person with disabilities.
Experiencing rights within positive, person-centred support networks of people with intellectual disability in Australia
Publisher: Wiley
Date: 29-10-2012
DOI: 10.1111/J.1365-2788.2012.01647.X
Abstract: This research describes issues related to human rights as they arose within the everyday lives of people in nine personal support networks that included adult Australians with an intellectual disability (ID). The research was part of a wider 3-year ethnographic study of nine personal support networks. A major criterion for recruitment was that people in these networks were committed to actively developing the positive, meaningful future of an adult family member with an ID. Data were collected from November 2007 to March 2011 via interviews, participant observations and analysed within the framework of situational analysis. Findings were checked with network members. The issue of rights was challenging to network members. Subtle rights violations could have a major impact on an in idual with a disability. Network members worked to protect the rights of people with ID by building and maintaining an empathic and respectful support network, developing the person's self-confidence and autonomy and ensuring that the person with an ID was an active member of the personal support network. The maintenance of rights within a supportive environment remains a difficult task. It can be facilitated by a deep knowledge and respect for the person being supported, the promotion of his or her active participation in the planning and provision of support, and an experimental and reflective approach.
‘Through my eyes’: feminist self-portraits of Osteogenesis Imperfecta as arts-based knowledge translation
Publisher: Informa UK Limited
Date: 06-04-2021
Exploring the later life relationship between adults with cerebral palsy and their non-disabled siblings
Publisher: Informa UK Limited
Date: 22-07-2013
DOI: 10.3109/09638288.2013.816786
Abstract: Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their non-disabled siblings. Twelve adults with moderate to severe cerebral palsy and 16 of their non-disabled siblings were interviewed twice to explore their relationships. Constructivist grounded theory method was used to analyse the data. Four themes were identified as important in understanding these later life sibling relationships: sharing childhood experiences, contact in adulthood, diminishing parental role and increasing support needs. The life course approach indicated that siblings' growing up together was important for the development and maintenance of emotional closeness later in life. Emotional closeness and familial obligation were important factors in motivating siblings with and without cerebral palsy to maintain or re-establish contact with each other in adulthood. Maintenance of sibling relationships in later life is dependent on health, proximity and the ability to keep in contact with each other. Implications for Rehabilitation As adults with severe cerebral palsy live longer, their relationships with non-disabled siblings often take on increased importance and particularly as their parents may be no longer able to provide support. Service providers have a role in helping ageing siblings with and without disability to maintain and build their relationships, for ex le, by supporting geographically distant siblings to keep in touch. Service providers have a role in supporting the person with a disability and their siblings to make plans for the future.
Carer and service providers' experiences of individual funding models for children with a disability in rural and remote areas
Publisher: Hindawi Limited
Date: 03-05-2013
DOI: 10.1111/HSC.12032
Abstract: There is a global movement for people with a disability towards person-centred practices with opportunities for self-determination and choice. Person-centred approaches may involve in idual funding (IF) for the purchase of required support. A shift to a person-centred model and IF should allow people with a disability and their carers greater choice in therapy access. However, in iduals who live in rural and remote areas have less choice and access to therapy services than their metropolitan counterparts. Drawing on data from a larger study into therapy service delivery in a rural and remote area of New South Wales, Australia, this study describes some benefits and barriers to using IF to access therapy services in rural areas. Ten carers and 60 service providers participated in audio-recorded focus groups and in idual interviews during which IF was discussed. Transcribed data were analysed using thematic analysis and constant comparison. Greater access to and choice of therapy providers were identified as benefits of IF. Four barriers were identified: (i) lack of information and advice (ii) limited local service options and capacity (iii) higher costs and fewer services and (iv) complexity of self-managing packages. A range of strategies is required to address the barriers to using IF in rural and remote areas. Carers indicated a need for: accessible information a local contact person for support and guidance adequate financial compensation to offset additional travel expenses and coordinated eligibility and accountability systems. Service providers required: coordinated cross-sector approaches local workforce planning to address therapist shortages certainty around service viability and growth clear policies and procedures around implementation of IF. This study highlights the need for further discussion and research about how to overcome the barriers to the optimal use of an IF model for those living in rural and remote areas.
'I don't feel like I'm in this on my own': Peer support for mothers of children with intellectual disability and challenging behaviour
Publisher: SAGE Publications
Date: 24-04-2019
Abstract: This article reports on the peer support experiences of mothers with a son or daughter with intellectual disability and challenging behaviour. Engagement in parent peer support programs can improve family quality of life and may have multifaceted benefits at the interpersonal, intra-in idual self-change and sociopolitical levels. Thirteen mothers were interviewed about their experiences of participating in a parent peer support program. Thematic analysis focused on the process elements of the program that contributed to its effectiveness in providing support to parents. There were three process-related themes: the role of a paid coordinator, ersity of engagement strategies and matching of peer support partners. Mothers appreciated the opportunities provided to engage in a range of strategies tailored to in idual preferences, time and capacity constraints, supported by the paid coordinator. One-to-one peer support proved difficult to sustain given the challenges mothers faced in their day-to-day lives.
Book Review Editor: Rachel Mayes
Publisher: Informa UK Limited
Date: 09-02-2012
The Future of Disability Research in Australia: Protocol for a Multiphase Research Agenda–Setting Study (Preprint)
Publisher: JMIR Publications Inc.
Date: 10-06-2021
Abstract: or people with disabilities to live a good life, it is essential that funded research in health and social care addresses their interests, meets their needs, and fills gaps in our understanding of the impact that services, systems, and policies may have on them. Decisions about research funding should be based on an understanding of the research priorities of people with disabilities, their supporters and allies, disability researchers, service providers, and policy makers working in the field. he aim of this protocol is to describe the research design and methods of a large-scale, disability research agenda–setting exercise conducted in 2021 in Australia. he research agenda–setting exercise involves 3 integrated phases of work. In the first phase, a previous audit of disability research in Australia is updated to understand previous research and continuing gaps in the research. Building on this, the second phase involves consultation with stakeholders—people with disabilities and their supporters and family members, the disability workforce, and people working within services and connected sectors (eg, aging, employment, education, and housing), academia, and public policy. Data for the second phase will be gathered as follows: a national web-based survey a consultation process undertaken through the government and nongovernment sector and targeted consultation with Aboriginal and Torres Strait Islander people, children with disabilities and their families, people with cognitive disability, and people with complex communication needs. The third phase involves a web-based survey to develop a research agenda based on the outcomes of all phases. e have started working on 2 parts of the research prioritization exercise. Through the research-mapping exercise we identified 1241 journal articles and book chapters (referred to as i research papers /i ) and 225 publicly available reports (referred to as i research reports /i ) produced over the 2018-2020 period. Data collection for the national survey has also been completed. We received 973 fully completed responses to the survey. Analysis of these data is currently underway. his multi-method research agenda–setting study will be the first to provide an indication of the areas of health and social research that people across the Australian disability community consider should be prioritized in disability research funding decisions. Project results from all phases will be made publicly available through reports, open-access journal publications, and Easy Read documents. ERR1-10.2196/31126
Integrating evidence into policy and sustainable disability services delivery in western New South Wales, Australia: The 'wobbly hub and double spokes' project
Publisher: Springer Science and Business Media LLC
Date: 21-03-2012
The experience of mothers supporting self‐determination of adult sons and daughters with intellectual disability
Publisher: Wiley
Date: 28-12-2020
DOI: 10.1111/JAR.12680
Abstract: The right of people with disability to be self-determining, to live a life of their choosing, is increasingly recognized and promoted. For adults with intellectual disability, support to enable self-determination may be required. This is often provided by family, yet little is understood about the experience of providing such support. An interpretative phenomenological analysis (IPA) of eight in idual, semi-structured interviews with mothers was conducted, to understand the meaning given to their experience of supporting self-determination of their adult son or daughter with intellectual disability. Three superordinate themes were identified: (a) support context (b) continuum of support roles and (c) mother's personal concerns. Mothers of adults with intellectual disability experience an ongoing sense of responsibility to balance competing rights and concerns as they support self-determination. This complex, interdependent relationship results in roles that may facilitate, guide, influence and at times restrict choice and control.
End-of-Life Care and Dying: Issues Raised by Staff Supporting Older People with Intellectual Disability in Community Living Services
Publisher: Wiley
Date: 21-09-2012
DOI: 10.1111/JAR.12000
Abstract: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. Focus groups and in idual interviews were conducted, guided by grounded theory methodology. The current status of end-of-life care and dying comprised five key 'issues': knowledge of dying, ethical values, the where of caring, the how of caring and post-death caring. These issues occurred in relationship with 'partners', including the dying person, other clients, fellow staff, family, external health services and the coroner. End-of-life care represents a complex interaction between the care issues and the partners involved in care. Despite this complexity, staff were committed to the provision of end-of-life care.
‘In the beginning it was difficult but things got easier’: Service use experiences of family members of people with disability from Iraqi and Syrian refugee backgrounds
Publisher: Wiley
Date: 09-04-2022
DOI: 10.1111/JPPI.12424
Abstract: A 2012 change in Australia's immigration policy saw increased resettlement of refugees with disability, with a large number fleeing political instability in Iraq and Syria. The evidence on service disparities for resettled refugees with disability and their families is sparse. The study aim was to explore, from multiple stakeholder perspectives, the experiences of people with disability from Iraqi and Syrian refugee backgrounds resettled in Australia, with a view to informing future services and supports. Interviews with nine family members of 11 people with disability from Iraqi and Syrian refugee backgrounds and seven practitioners working in refugee specific services. Persons with disability had a range of disabilities including intellectual or developmental, physical and sensory. Interviews were translated from Arabic to English as required and analysed using thematic analysis. Two themes described the practices and service interventions that addressed disparities: (1) Getting the basics right: Refugee specific services played a crucial role during early settlement in ensuring access to medical, health and social care including diagnosis, medication, equipment, housing and financial support. (2) Ongoing access to disability supports: Refugee specific services assisted families with longer‐term supports once immediate needs were met, including accessing services through the National Disability Insurance Scheme. Participants described benefits such as having access to interpreters and Arabic‐speaking staff, demonstrating services' attention to cultural sensitivity and safety, and problems including waiting times, bureaucratic processes and housing needs. Refugee specific services, disability services and health services should collaboratively develop and implement strategies to tackle the intersectional nature of issues resettled refugees with disability and their families encounter in Australia. These should be informed by the experiences of people with disability and family members from refugee backgrounds and privilege holistic practices that avoid reliance on one sector alone to address the complex needs of refugees with disability.
Representation and knowledge exchange: A scoping review of photovoice and disability
Publisher: Intellect
Date: 07-2019
Abstract: Long-held misperceptions around disability continue to cause discrimination, stigmatization and harm. Effective, impactful research can challenge and change the status quo and influence decision-making. This scoping review seeks to understand how one arts-based research method, photovoice, interrogates issues in disability research. This article maps the current field of enquiry developing around disability photovoice research and examines two variables: representation and knowledge exchange. Thirty identified articles converged on the relevance to people with disability of community, accessibility, attitudinal change, adaption, economic empowerment and identity. Disseminating new knowledge generated through photovoice to a broader audience can have impact, especially on physical and attitudinal barriers. However, impact is rarely addressed in photovoice research. With its growing application in the disability field, photovoice research should monitor its influence on community and the environment to determine its benefit beyond the research setting.
Exploring the intersection of human rights, health, disability and refugee status: an arts-based approach
Publisher: Informa UK Limited
Date: 09-2020
Working with Anangu (Aboriginal people) with disabilities from remote Central Australia. Navigating multiple expectations: “sandpaper and polyfilla”
Publisher: Informa UK Limited
Date: 12-01-2022
Background paper for ASID position statement on intellectual disability and complex support needs
Publisher: Informa UK Limited
Date: 02-01-2019
‘To the Arabic Community Disability Is Not Normal’: Multiple Stakeholder Perceptions of the Understandings of Disability among Iraqi and Syrian People from Refugee Backgrounds
Publisher: Oxford University Press (OUP)
Date: 14-12-2020
DOI: 10.1093/JRS/FEAA111
Abstract: In 2015, the Australian government committed to take an additional 12,000 refugees from Syria and Iraq prioritizing those considered most vulnerable including people with disability. The aim of this preliminary study was to understand, from multiple stakeholder perspectives, the experiences of settling in Australia for people with disability from Syrian and Iraqi refugee backgrounds living in Sydney. Interviews were conducted with nine family members of 11 people with disability from Iraqi and Syrian refugee backgrounds eight Iraqi and Syrian community organization leaders and seven community and health refugee service practitioners. Interviews were transcribed and analysed using the thematic analysis. Three themes were identified that contribute to understandings of disability based on the perceptions of the multiple stakeholders interviewed: Iraqi and Syrian perceptions of ‘disability’ beliefs about who is ‘responsible for’ the disability and comparisons between Iraqi/Syrian and Australian views, attitudes, and approaches to disability. Understandings of disability are shaped by fluid and dynamic factors, including culture. It is essential that services are offered to people with disability and their family members using a whole-of-person, culturally informed approach to community support.
“Having the Time of My Life”: An Exploratory Study of Women With Intellectual Disability Growing Older
Publisher: Informa UK Limited
Date: 12-2006
DOI: 10.1080/07399330600880541
Abstract: In this paper we report on an exploratory study with a group of 13 older women with intellectual disability in Sydney, Australia, to add to the limited knowledge about how they perceive their lives as they grow older. We report the findings from the qualitative data gathered as an extension of a structured interviewing process. Analysis revealed five themes: "it's just who I am," "enjoying support from family and friends," "being part of the community," "feeling healthy," and having "enough money to buy what I need." We discuss these themes in relation to the concept of resilience. Overall, the women we talked with were ageing well, with meaningful, productive, and sustainable lives.
Should I stay or should I go? Exploring the job preferences of allied health professionals working with people with disability in rural Australia
Publisher: Springer Science and Business Media LLC
Date: 30-06-2015
Self-determination: Adults with intellectual disability and their family
Publisher: Informa UK Limited
Date: 21-04-2015
‘We couldn't function without volunteers': volunteering with a disability, the perspective of not-for-profit agencies
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 06-2006
Perspectives of rural carers on benefits and barriers of receiving occupational therapy via Information and Communication Technologies
Publisher: Wiley
Date: 26-01-2016
Abstract: People with a disability living in rural areas commonly experience difficulty in accessing therapy services. Information and Communication Technologies (ICT) may have the potential to provide occupational therapy services remotely through two-way visual interactions. The aim of this qualitative study was to understand the perspectives of carers of a person with a disability living in rural New South Wales (NSW) on the use of ICT for occupational therapy service delivery. In idual semi-structured telephone interviews were conducted with 11 carers of persons with a disability living in rural NSW. Participants were asked about their use of technology, therapy experiences and their attitudes towards using ICT to receive occupational therapy for their son/daughter. Data were analysed via constant comparison and thematic analysis. Participants were willing to use ICT to enhance their current access to therapy based on their in-depth knowledge of their son or daughter and their prior experiences with therapy and technology. For ICT to work for occupational therapy, participants identified the need for support and access prior to, during and between ICT sessions. From the carers' perspectives, ICT has the potential to increase access to occupational therapy services for people with a disability who live in rural NSW. Occupational therapists could benefit from eliciting the experiences, knowledge and willingness of rural carers to deliver therapy via ICT, thereby supplementing and enhancing in-person service delivery.
Barriers to the use of Information and Communication Technology by occupational therapists working in a rural area of New South Wales, Australia
Publisher: Wiley
Date: 19-12-2012
Abstract: This qualitative study formed part of a large-scale, multi-phase study into the delivery of therapy services to people with a disability, living in one rural area of New South Wales, Australia. The study's purpose was to identify the impact of Information and Communication Technology on the workforce practices of occupational therapists' working in a rural area of New South Wales. In idual semi-structured telephone interviews were conducted with 13 occupational therapists working in disability, health and private practice in a rural area of New South Wales. Participants were asked about access to, skills and limitations of using Information and Communication Technology. A modified grounded theory approach, based on thematic analysis and constant comparison, was used to analyse the interview transcripts. This study found widespread use of technology by rurally based occupational therapists working in the disability sector in New South Wales. However, Information and Communication Technology was primarily used for client contact, professional development and professional networking rather than therapy provision. The study identified in idual, workplace and community barriers to greater uptake of Information and Communication Technology by this group. The in idual barriers included: age cohort, knowledge and personal preferences. The workplace barriers included: support and training and availability of resources. The community barriers included: infrastructure and perceptions of clients' acceptance. The potential exists for Information and Communication Technology to supplement face-to-face therapy provision, enhance access to professional development and reduce professional isolation thereby addressing the rural challenges of large distances, travel times and geographic isolation. To overcome these challenges, in idual, workplace and community Information and Communication Technology barriers should be addressed concurrently.
Using a Life Course Approach to Explore How the Use of AAC Impacts on Adult Sibling Relationships
Publisher: Informa UK Limited
Date: 12-2011
DOI: 10.3109/07434618.2011.630020
Abstract: A life-course methodology was used to explore the relationship between four adults with moderate/severe cerebral palsy with complex communication needs who used AAC, and six of their non-disabled siblings. In-depth interview data were analyzed using a constructivist grounded-theory approach. Elder's life-course paradigm illuminated the importance of historical timing, social time, linked lives, and human agency to the development of communication strategies between siblings. Taking a life-course approach to studying issues related to in iduals who use AAC assists understanding of how their family experiences and relationships change over time. This understanding is important, given the strong commitment by family members demonstrated in this study to supporting in iduals who use AAC.
The Back to Back Theatre film internship program for people with intellectual disability: A summative evaluation
Publisher: Informa UK Limited
Date: 24-01-2023
Commentary by Leanne Dowse and Angela Dew on “Reducing the Inequality of Luck: Keynote Address at the 2015 Australasian Society for Intellectual Disability National Conference” (Bonyhady, 2016)
Publisher: Informa UK Limited
Date: 02-07-2016
Promoting healthy, productive ageing: plan early, plan well
Publisher: Informa UK Limited
Date: 12-2004
More, better, or different? NDIS workforce planning for people with intellectual disability and complex support needs
Publisher: Informa UK Limited
Date: 02-01-2016
Need for an Australian Indigenous disability workforce strategy: review of the literature
Publisher: Informa UK Limited
Date: 06-07-2017
DOI: 10.1080/09638288.2016.1201151
Abstract: To identify approaches for developing workforce capacity to deliver the National Disability Insurance Scheme (NDIS) to Indigenous people with disability in Australian rural and remote communities. A narrative review of peer-reviewed and gray literature was undertaken. Searches of electronic databases and websites of key government and non-government organizations were used to supplement the authors' knowledge of literature that (a) focused on Indigenous peoples in Australia or other countries (b) referred to people with disability (c) considered rural/remote settings (d) recommended workforce strategies and (e) was published in English between 2004 and 2014. Recommended workforce strategies in each publication were summarized in a narrative synthesis. Six peer-reviewed articles and 12 gray publications met inclusion criteria. Three broad categories of workforce strategies were identified: (a) community-based rehabilitation (CBR) and community-centered approaches (b) cultural training for all workers and (c) development of an Indigenous disability workforce. An Indigenous disability workforce strategy based on community-centered principles and incorporating cultural training and Indigenous disability workforce development may help to ensure that Indigenous people with a disability in rural and remote communities benefit from current disability sector reforms. Indigenous workforce development requires strategies to attract and retain Aboriginal workers. Implications for Rehabilitation Indigenous people with disability living in rural and remote areas experience significant access and equity barriers to culturally appropriate supports and services that enable them to live independent, socially inclusive lives. A workforce strategy based on community-centered principles has potential for ensuring that the disability services sector meets the rehabilitation needs of Aboriginal people with disability living in rural and remote areas. Cultural training and development of an Indigenous disability workforce may help to ensure a culturally safe disability services sector and workforce.
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