https://hdl.handle.net/2123/8997 2026-06-13T15:10:05Z https://hdl.handle.net/2123/35119 Submission: Inquiry into the Integrity of the National Disability Insurance Scheme Smith-Merry, Jennifer; Hollier, Joel; Yen, Ivy This submission draws on qualitative interviews conducted in 2025 with 86 NDIS participants, carers, and stakeholders from across Australia to understand experiences of the NDIS for people with psychosocial disability. As part of these discussions, participants discussed a range of experiences relating to the nature, impacts, and drivers of fraud, financial misuse, and sharp practices within the Scheme. 2026-04-17T00:00:00Z https://hdl.handle.net/2123/35118 ARC Industry Laureate Fellowship project newsletter - April 2026 Smith-Merry, Jennifer; Chang, Kuo-yi Jade; Hollier, Joel; Bobo, Firew; Yen, Ivy The five-year Australian Research Council (ARC) Industry Laureate Fellowship project, led by Professor Jennifer Smith-Merry, continues to make strong progress toward improving outcomes for people with psychosocial disability within the National Disability Insurance Scheme (NDIS). See our April newsletter for latest updates. 2026-01-01T00:00:00Z https://hdl.handle.net/2123/35096 Recent and proposed changes for the NDIS: What does it mean for people with mental health support needs? Chang, Kuo-yi Jade; Hollier, Joel; Kim, Hyejin; Yen, Ivy; Smith-Merry, Jennifer This report presents findings from a national survey of 1,625 people in Australia, examining experiences of and perspectives on recent and proposed reforms to the National Disability Insurance Scheme (NDIS), with a particular focus on psychosocial disability and mental health support needs. Recent reforms have focused on clarifying the scope of NDIS-funded supports, strengthening access criteria and their application, improving transparency in decision-making and plan funding, and expanding regulatory oversight through mandatory provider registration and enhanced compliance powers. Proposed reforms include efforts to reshape the NDIS Early Intervention pathway for psychosocial disability, alongside the development of Foundational Supports outside the NDIS to deliver broader system-level supports. 2026-04-10T00:00:00Z https://hdl.handle.net/2123/35094 Review of Commonwealth commissioned reports (2020-June 2025): themes and key findings relevant to targeted foundational supports for psychosocial disability. Mullin, Bernie; Smith-Merry, Jennifer; Hollier, Joel This paper synthesises the common themes that we considered in the design of the research-based Foundational Support model. These were extracted from relevant Commonwealth government commissioned reviews and reports, published from 2020 through to June 2025.They focus on the findings and recommendations from the perspective of government policies, rather than the academic literature and research sector or any critiques of these reports from the broader mental health advocacy and lived experience sectors. 2026-04-10T00:00:00Z https://hdl.handle.net/2123/34425.2 Targeted foundational supports for people with psychosocial disability outside of the NDIS: model proposal Smith-Merry, Jennifer; Mullin, Bernie; Hollier, Joel; Bobo, Firew To provide a draft model for delivering targeted foundational supports for people with psychosocial disability who are outside the NDIS. The aim is to offer a model derived from a research perspective as a basis for critique, refinement and to inform the wider sector’s approach to foundational supports. 2026-03-04T00:00:00Z https://hdl.handle.net/2123/34827 Expectations and Reality: The Lived Experiences of Australians with Psychosocial Disability Within the NDIS Hollier, Joel; Smith-Merry, Jennifer While Australia's National Disability Insurance Scheme (NDIS) was founded on principles of choice and control, for people with significant mental health challenges (what the NDIS calls ‘psychosocial disability’) these ideals often remain elusive. Support systems continue to be fractured and in the context of ongoing policy reforms, it is vital to understand expectations people have of the scheme, alongside ongoing experiences. Drawing on semi-structured interviews with NDIS participants (n = 30) and informal/ unpaid carers (n = 18), this research explores these expectations and lived realities. Results showed that prior to engaging with the NDIS, participants had mixed expectations of the scheme, with a lack of information accessed and confusion about what the scheme could offer. For some, expectations were also formed in the context of acute mental illness. When expectations were expressed, these were often unmet, with interviewees reporting a lack of choice and control, frustrations with the system, a lack of appropriate services, and encounters with unscrupulous or underperforming providers. Findings should inform policy directions to better align Australia's mental health ecosystem with the realities faced by those it seeks to support. Strategies are required for planning and communication about what the NDIS offers participants to inform choice and control of needed supports. 2026-01-01T00:00:00Z https://hdl.handle.net/2123/34823 Disparities in access to health and support services for people with disability in Australia: a scoping review of the structural social determinants Bobo, Firew Tekle; Hollier, Joel; Yen, Ivy; Chang, Kuo-yi Jade; Smith-Merry, Jennifer Background Systemic inequities in health and social services exacerbate barriers for disadvantaged groups within the disability community, leading to poorer health outcomes and diminished quality of life. We aimed to evaluate how structural determinants function to shape disparities in access to health and support services for people with disability. Methods We followed Arksey and O’Malley’s methodological framework. A comprehensive search strategy was implemented across five major databases—Medline, Embase, CINAHL, PsycINFO, and Scopus—focusing on four key concepts: social determinants, disability, services (both support and health services), and Australia. Articles published after 2013 were included in the review. Results After screening 2,506 records, 54 studies were included in the review. These studies identified key drivers of inequities in access to health and social support services. Structural determinants, such as policy gaps, geographic disparities, service integration challenges, cultural misalignment, and socioeconomic marginalisation, significantly hinder equitable access. Additionally, social determinants—including household income, educational attainment, employment status, and gender — shaped individuals’ ability to engage with systems and services. Low-income individuals, those with limited education, and other disadvantaged communities, such as Indigenous and culturally diverse groups, face compounded barriers when seeking support. Conclusions People with disability face significant structural barriers to access health and support services, especially those from disadvantaged backgrounds. The implementation of interventions and efforts to improve the health and well-being of this population should be primarily viewed through the lens of those facing intersectional disadvantage. Future research should focus on generating disaggregated evidence to support policy efforts aimed at better targeting disadvantaged groups. Keywords Disability, Social determinants of health, Inequity, Socioeconomic factors, NDIS, Health services, Australia 2026-01-01T00:00:00Z https://hdl.handle.net/2123/34676 Implementing community-based psychosocial interventions for adults with severe mental illness in high-income countries: a rapid scoping review Chang, Kuo-yi Jade; Yen, Ivy; Bobo, Firew; Hollier, Joel; Smith-Merry, Jennifer Psychosocial interventions support functional recovery and social integration for people with severe mental illness (SMI); however, their implementation remains fragmented and inconsistent. This rapid scoping review maps the landscape of psychosocial interventions for adults with SMI in high-income countries, identifying their key components, implementation challenges, and strategies to optimise delivery. Following the Cochrane rapid review guidelines, we searched MEDLINE and CINAHL (January 2009 - May 2024) and conducted manual reference screening. Eligible studies focused on non-pharmacological, community-based interventions. Thematic analysis was used to identify implementation barriers and enablers. Of 8,624 screened records, 464 studies met inclusion criteria, covering 15 intervention types. Cognitive-focused interventions (n = 100) supported employment (n = 86), and behavioural therapies (n = 66) were most studied. Outcomes focused on symptom (n = 179), daily living skills (n = 160), and cognitive states (n = 157). Implementation was often constrained by systemic, organisational, and individual-level barriers. Systemic challenges included fragmented services, stigma, cultural and linguistic barriers, and economic constraints, highlighting the need for integrated care models, policy reforms, and culturally responsive approaches. Organisational challenges such as staff resistance, insufficient training, and resource limitations underscored the importance of leadership, stakeholder engagement, and investment. At the individual level, low motivation, logistical difficulties, trauma histories, and goal misalignment reduced engagement and retention, highlighting the need for flexible, person-centred, trauma-informed approaches, strong social networks, and a balance between structure and adaptability. Selecting, adapting, and funding psychosocial interventions remain complex. This review provides a foundation for future systematic reviews of homogeneous intervention subsets to better inform policy and practice. 2026-01-01T00:00:00Z https://hdl.handle.net/2123/34643 ARC Industry Laureate Fellowship project newsletter Smith-Merry, Jennifer; Chang, Kuo-yi Jade; Bobo, Firew; Hollier, Joel; Yen, Ivy The five-year Australian Research Council (ARC) Industry Laureate Fellowship project, led by Professor Jennifer Smith-Merry, continues to make strong progress toward improving outcomes for people with psychosocial disability within the National Disability Insurance Scheme (NDIS). See our December newsletter for latest updates. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34623 Equity first: mapping who gets what is essential to re‐designing the NDIS Smith-Merry, Jennifer; Chang, Kuo-yi Jade Recent media commentary on the operation of the National Disability Insurance Scheme (NDIS) has focused on costs, fraud, and preventing dubious provider practices. This discussion obscures the broader importance of the NDIS for overcoming the entrenched disadvantages that prevent people with disability fully participating in Australian society. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34622 The Cost of the National Disability Insurance Scheme: Australia’s Print‐Media Discourse Chinnappa, Meera; Smith-Merry, Jennifer; Chang, Kuo-yi Jade This paper examines the way that Australian newspapers have framed the cost of the National Disability Insurance Scheme (NDIS). Introduced in 2013, the NDIS represented a major change in Australia's disability support policy, moving for the first time to a nationwide universal insurance model. NDIS costs have continued to exceed estimates, raising concerns about the sustainability of the scheme, as reflected in recent calls for reform. Media analysis provides an understanding of the public narrative surrounding key social issues. Using thematic analysis of n = 90 newspaper articles, five key themes were identified: cost as a problem, projections of cost, politicisation of cost, drivers of cost and the interests of stakeholders. The most dominant theme was cost as a problem , which contributed to a strongly negative portrayal of the cost of the NDIS that emerged across articles. This negativity was connected to discourse relating to the deservingness of participants receiving funding and the contribution of ‘undeserved’ support to the growing cost of the scheme. We explore the way such narratives obscure the original principles of the scheme—universal insurance and investment—and suggest that the framing identified instead reflects existing negative discourses surrounding targeted‐welfare systems and their recipients. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34619 Targeted foundational supports model FAQ Smith-Merry, Jennifer; Mullin, Bernie This FAQ collates questions received through our Webinar, 'Building a system of foundational supports for psychosocial disability across Australia' https://hdl.handle.net/2123/34509 (12/11/25), along with questions raised in the leadup to the webinar which focused on the model we have developed for the provision of Targeted Foundational Supports for psychosocial disability. Questions have been paraphrased and grouped for clarity of questions and responses. We anticipate this document will continue to develop as questions emerge. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34509 Building a system of foundational supports for psychosocial disability across Australia Smith-Merry, Jennifer; Mullin, Bernie The goal of the webinar "Exploring a foundational supports model for people with psychosocial disability: Presentation and Discussion" is to provide an evidence-based model that can spark discussion, and be utilised by the sector for co-designing a robust ecosystem of supports. Questions raised during this webinar informed the development of the 'Targeted foundational supports model FAQ' https://hdl.handle.net/2123/34619 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34466 Targeted foundational supports for people with psychosocial disability outside of the NDIS: model background and rationale Smith-Merry, Jennifer; Mullin, Bernie; Hollier, Joel; Bobo, Firew; Chang, Jade This paper provides further background and rationale for a proposed model for delivering targeted foundational supports for people with psychosocial disability who are outside the National Disability Insurance Scheme (NDIS). This paper supplements the summary paper by outlining key elements of available research and data that informed the development of this model. 2025-11-04T00:00:00Z https://hdl.handle.net/2123/34430 Psychosocial Navigator role - key attributes Smith-Merry, Jennifer; Hollier, Joel The 2023 NDIS Review recommended the introduction of a specialist ‘Navigator’ role with expertise in psychosocial disability to assist people with disability in a complex support system. Navigators are important for multiple different systems supporting people with psychosocial disability including the NDIS and targeted Foundational Supports for psychosocial disability. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34424 Targeted foundational supports for psychosocial disability. Evidence from qualitative interviews with sector stakeholders Smith-Merry, Jennifer; Mullin, Bernie; Hollier, Joel We conducted interviews with 37 people who have high-level knowledge of the operation of the NDIS and supports for people with serious mental illness outside of the NDIS. We specifically asked all interview participants about foundational supports, including general perceptions of the concept and what they would ideally include. These data are not comprehensive in that they only include the perspectives of the interviewees that self-selected to participate in the study however they do provide a snapshot of the main concerns and interests of people who understand the current situation with regard to NDIS supports and related gaps. 2025-01-01T00:00:00Z https://hdl.handle.net/2123/34389 Beyond the NDIS: Unmet needs, Foundational Supports and system reform for psychosocial disability Chang, Kuo-yi Jade; Hollier, Joel; Smith-Merry, Jennifer; Yen, Ivy; Kim, Hyejin We conducted a survey of 1625 people in Australia, asking them about their views on recent and proposed reforms to the National Disability Insurance Scheme (NDIS) and broader psychosocial supports. In this report we have brought together the data relating to unmet needs for support, Targeted Foundational Supports for psychosocial disability, and broader policy reform priorities. 2025-10-09T00:00:00Z https://hdl.handle.net/2123/34387 ARC Industry Laureate Fellowship Project newsletter - Fixing the NDIS for People with Psychosocial Disability Smith-Merry, Jennifer; Chang, Jade; Bobo, Firew; Hollier, Joel; Yen, Ivy The five-year Australian Research Council (ARC) Industry Laureate Fellowship project, led by Professor Jennifer Smith-Merry, continues to make strong progress toward improving outcomes for people with psychosocial disability within the National Disability Insurance Scheme (NDIS). This project (2024–2029) is designed to address key gaps in NDIS operation and data for one of its largest participant groups. The research team is developing new evidence on scheme outcomes, cost-effectiveness, and participant and stakeholder experiences to help improve supports for people with psychosocial disability—both within and beyond the NDIS. 2025-10-09T00:00:00Z https://hdl.handle.net/2123/34236 Crippling Christian Theology as I Power My Wheelchair Out the Door Clifton, Shane This article draws on the author’s experience of spinal cord injury to reflect on theological method and central elements of Christian theology. It uses disability theory to unmask the ablest ideology that too often frames church hierarchies and that marginalizes and excludes people with disability and others who are different, notably LGBTQI people of faith. From this perspective, it provides a critical reading of the traditional threefold Christian gospel of perfect creation, fall, and redemption as renewed perfection, arguing that vulnerability, pain, and disability are not a consequence of the fall, but the product of the creative generativity of nature. It tentatively reimagines atonement theory and redemption as a reversal of unjust marginalization (transformative grace for those who experience and perpetrate evil). Finally it considers the transformation of the soul by reference to a disability aesthetic and the truth, goodness, and beauty of God and the diverse creation. It elevates disability as beautiful and desirable, a creative gift of infinite difference. 2020-01-01T00:00:00Z https://hdl.handle.net/2123/34235 Happiness and Mental Illness: Virtue ethics in Dialogue with Psychology Clifton, Shane; Stevens, Bruce This interdisciplinary article explores the intersection between the virtue ethics tradition and psychological therapies exploring the meaning of happiness for people living with a disabling mental illness. The logic of virtue ethics faces the challenge of mental illness, which is how to conceive of eudaimonia in the context of an illfness that targets happiness and potentially disrupts a person’s capacity to function rationally and exercise virtue. Drawing on two illustrative case studies of schizophrenia and major depression disorder, this article identifies substantive points of contact between virtue ethics and the therapeutic strategies of recovery theory and Acceptance and Commitment Therapy. In so doing, it aims to provide ways of thinking about happiness that can help therapists and people with a mental illness conceive of flourishing, not despite mental illness, but by incorporating the experience into the storied meaning of life. And since mental illness reflects the vulnerabilities that are central to human life, its examination also expands the horizons of the virtue ethics tradition. 2018-01-01T00:00:00Z https://hdl.handle.net/2123/34234 Disability and the Complexity of Choice in the Ethics of Abortion and Voluntary Euthanasia Clifton, Shane In the polarized debates about abortion and voluntary euthanasia, disability advocates, who normally align with left-wing social forces, have tended to side with conservative and religious voices in expressing concerns about the impact of technological and sociopolitical developments on disabled futures. This paper draws on the social model of disability and the virtue ethics tradition to explain the alignment between the religious and disability perspectives, and the theory of transformative choice to highlight the limits and biases of the pro-choice logic. Yet, it also recognizes the inherent contradiction of disabled advocates taking a paternalistic position against the personal agency of women and people facing terminal illnesses. A disability perspective serves the discussion of abortion and euthanasia as an encouragement to work together for the building of a society that enables people with diverse disabilities to exist and flourish, and helps pregnant women, people facing disabling and terminal illnesses, and politicians and social influencers to make informed choices. 2018-01-01T00:00:00Z https://hdl.handle.net/2123/34233 The dark side of prayer for healing: Toward a theology of well-being Clifton, Shane This paper explores the relationship between disability and pentecostal theologies and practices of healing. First, it draws on the testimony of people with a disability, describing the challenge of being the “elephant in the room”: the obviously unhealed in a social space in which supernatural healing is understood to be connected to the gospel, a reward of faith, and a central part of a life and ministry of the church. Second, it deconstructs pentecostal theologies and practices of healing, identifying their potentially alienating effect. Finally, it proposes an alternative orientation, replacing the emphasis upon divine healing with a focus on well-being. To this end, it draws on the holistic intention of the pentecostal Full Gospel and relates this to the virtue tradition, with its concern for long-term flourishing in the midst of the hardship and fragility of life. 2014-01-01T00:00:00Z https://hdl.handle.net/2123/34232 Crippled Grace: Disability, Virtue Ethics, and the Good Life Clifton, Shane Crippled Grace combines disability studies, Christian theology, philosophy, and psychology to explore what constitutes happiness and how it is achieved. The virtue tradition construes happiness as whole-of-life flourishing earned by practiced habits of virtue. Drawing upon this particular understanding of happiness, Clifton contends that the experience of disability offers significant insight into the practice of virtue, and thereby the good life. With its origins in the author’s experience of adjusting to the challenges of quadriplegia, Crippled Grace considers the diverse experiences of people with a disability as a lens through which to understand happiness and its attainment. Drawing upon the virtue tradition as much as contesting it, Clifton explores the virtues that help to negotiate dependency, resist paternalism, and maximize personal agency. Through his engagement with sources from Aristotle to modern positive psychology, Clifton is able to probe fundamental questions of pain and suffering, reflect on the value of friendship, seek creative ways of conceiving of sexual flourishing, and outline the particular virtues needed to live with unique bodies and brains in a society poorly fitted to their diverse functioning. Crippled Grace is about and for people with disabilities. Yet, Clifton also understands disability as symbolic of the human condition--human fragility, vulnerability, and embodied limits. First unmasking disability as a bodily and sociocultural construct, Clifton moves on to construct a deeper and more expansive account of flourishing that learns from those with disability, rather than excluding them. In so doing, Clifton shows that the experience of disability has something profound to say about all bodies, about the fragility and happiness of all humans, and about the deeper truths offered us by the theological virtues of faith, hope, and love. 2018-01-01T00:00:00Z https://hdl.handle.net/2123/34155 Report on Interviews About Technology Accessibility, Support and Safety Considerations for the NDIS Disability Wellbeing Index Howe, Keran; Bulkeley, Kim; Llewellyn, Gwynnyth The Centre for Disability Research and Policy (CDRP), University of Sydney, was contracted to contribute to a three-year research project, 2022-2024, funded by the National Disability Insurance Agency (NDIA) and lead by Associate Professor Gang Chen, Monash University. The overarching aim of this research project was to design and test a preference-based wellbeing instrument that captures factors impacting on the wellbeing of people with disability in Australia, now known as the Disability Wellbeing Index (DWI). The role of the team based at the CDRP was to facilitate people with disabilities being involved in each stage of the research, including accessibility, safe environment, and self-reporting considerations for survey respondents. This is the second of four reports documenting the contribution of the team at the CDRP. This report describes the results of a consultations conducted with representatives from Disabled People’s Organisations (DPOs) and Disability Representative Organisations (DROs) to understand the accessible formats, support options, and safety considerations required to facilitate completion of the DWI. Dr Keran Howe, on behalf of CDRP, consulted with 16 representatives from eight Disabled People’s Organisations (DPOs) and Disability Representative Organisations (DROs) during April-June 2023. Results from this study confirmed that people with disability strongly recommended self-reporting of wellbeing where at all possible, with proxy completion being the option of last resort. Findings informed the development of a suite of alternative formats and support options that met a range of respondent support needs and communication preferences and further detailed safety considerations needing to be addressed, such as the potential for certain items to be triggering and cause distress. 2025-07-29T00:00:00Z https://hdl.handle.net/2123/34153 Report on the Development of Alternative Formats and Support Options for the Disability Wellbeing Index (DWI): Promoting Accessibility, Safety, and Self-Reporting for Survey Respondents Hines, Monique; Bulkeley, Kim; Llewellyn, Gwynnyth The Centre for Disability Research and Policy (CDRP), University of Sydney, was contracted to contribute to a three-year research project, 2022-2024, funded by the National Disability Insurance Agency (NDIA) and lead by Associate Professor Gang Chen, Monash University. The overarching aim of this research project was to design and test a preference-based wellbeing instrument that captures factors impacting on the wellbeing of people with disability in Australia, now known as the Disability Wellbeing Index (DWI). The role of the team based at the CDRP was to facilitate people with disabilities being involved in each stage of the research, including accessibility, safe environment, and self-reporting considerations for survey respondents. This is the third of four reports documenting the contribution of the team at the CDRP. In this report, we describe the process undertaken by the CDRP team from July-September 2023 to develop a suite of alternative formats and support options designed to address accessibility for self-report and safety considerations for completing the DWI. The final versions of the DWI preference weighting survey and support options offered to survey respondents are also presented. 2025-07-29T00:00:00Z https://hdl.handle.net/2123/34149 Disability Wellbeing Index (DWI): Analysis of Qualitative Components with Adult and Young People with Disability West, Raelene; Bulkeley, Kim; Llewellyn, Gwynnyth; Cooper, Emma; Plunkett, Karleen The Centre for Disability Research and Policy (CDRP), University of Sydney, was contracted to contribute to a three-year research project, 2022-2024, funded by the National Disability Insurance Agency (NDIA) and lead by Associate Professor Gang Chen, Monash University. The overarching aim of this research project was to design and test a preference-based wellbeing instrument that captures factors impacting on the wellbeing of people with disability in Australia, now known as the Disability Wellbeing Index (DWI). The role of the team based at the CDRP was to facilitate people with disabilities being involved in each stage of the research, including accessibility, safe environment, and self-reporting considerations for survey respondents. This is the first of four reports documenting the contribution of the team at the Centre for Disability Research and Policy. This report describes the results of a qualitative analysis of focus groups and interviews conducted in 2022 with adults and young people with disability to explore their perspectives on initial versions of the DWI and issues of concern to be addressed in the implementation of the DWI. The findings from this study informed the refinement of DWI domains, items, and descriptors, and helped to identify wider issues that needed to be further explored, including safety considerations such as the context within which people complete the DWI and the accessibility of the DWI. 2025-07-28T00:00:00Z https://hdl.handle.net/2123/34146 Final Report on the Alternative Formats and Support Options for the Disability Wellbeing Index (DWI): Promoting Accessibility, Safety, and Self Reporting for Survey Respondents Hines, Monique; Bulkeley, Kim; Llewellyn, Gwynnyth The Centre for Disability Research and Policy (CDRP), University of Sydney, was contracted to contribute to a three-year research project, 2022-2024, funded by the National Disability Insurance Agency (NDIA) and lead by Associate Professor Gang Chen, Monash University. The overarching aim of this research project was to design and test a preference-based wellbeing instrument that captures factors impacting on the wellbeing of people with disability in Australia, now known as the Disability Wellbeing Index (DWI). The role of the team based at the CDRP was to facilitate people with disabilities being involved in each stage of the research, including accessibility, safe environment, and self-reporting considerations for survey respondents. This is the final of four reports documenting the contribution of the team at the CDRP. In this report, we describe the implementation of the alternative formats and support options offered to DWI survey respondents and our understanding of factors that facilitated (or did not) NDIS participants completing the DWI survey. These insights will help refine future iterations of the DWI and provide guidance for improving the provision of accessible communications to people with disability. 2025-07-28T00:00:00Z https://hdl.handle.net/2123/31749 Examining employment barriers and enablers for people with psychosocial disability – A scoping review Damian, Mellifont; Smith-Merry, Jennifer This report details the findings of our study about the employment of people with psychosocial disability. This research was commissioned by Candella and conducted by two researchers from the Centre for Disability Research and Policy at The University of Sydney. The study was led by a researcher with lived experience of disability with the Director of the Centre holding a supervisory role. The researchers carried out a scoping review across all years on publications that specifically focused on employment and psychosocial disability or mental impairment. Our research was summarised by applying thematic analysis against the 54 included publications to reveal themes corresponding to each of the research questions. In summary, we have addressed the four questions of: 1. What are the barriers to employment faced by individuals with psychosocial disability? Our inductive analysis has revealed a total of seven themes relating to the barriers to employment faced by individuals with psychosocial disability. These barriers included: 1. stigma as directed towards people with psychosocial disability as a barrier to employment; 2. discrimination against people with psychosocial disability as a barrier to gaining and maintaining employment; 3. policy gaps and challenges to improve employment outcomes for people with psychosocial disability; 4. service and program shortfalls that can hinder the employment of people with psychosocial disability; 5. psychosocial disability-related challenges to gaining or retaining employment; 6. legal shortfalls that fail to protect employees with psychosocial disability from discrimination in the workplace; and 7. inflexible workplace processes and prescriptive practices that can impede the employment of people with psychosocial disability. 2. How do the barriers experienced differ across various demographic groups (e.g., age, gender, socioeconomic status, geographic location)? We noted a general paucity of publications covering how employment barriers for people with mental impairments vary across demographic groups. The five groups identified by our thematic analysis were: 1. gender; 2. socioeconomic status; 3. age; 4. geographic location; and 5. intersectional discrimination. Nonetheless, our review revealed evidence of employment barriers variably experienced within demographic groups. For example, women with mental impairments were reported as: experiencing more discrimination than men; receiving less employment and advancement opportunities than men; and less likely to make a formal complaint about discrimination in the workplace than their male colleagues. 3. What measures can help to address the employment barriers that are faced by individuals with psychosocial disability? This scoping review revealed nine measures that are described in the literature as helping to address the employment barriers experienced by people with psychosocial disability. These evidence-based measures included: 1. service design improvements including those that are co-designed by people with psychosocial disability; 2. flexible and accommodating workplace arrangements and processes; 3. education and training to encourage the employment of people with psychosocial disability; 4. programs, schemes and interventions described as improving the employment participation of people with psychosocial disability; 5. current legal measures and proposed revisions to redress discrimination against employees with psychosocial disability; 6. government and organisational policies to support the employment of people with psychosocial disability; 7. activism and advocacy to redress the stigma and discrimination as directed towards people with psychosocial disability; 8. technology assisting the inclusion of people with psychosocial disability in the workplace; and 9. contact with people with psychosocial disability in the workplace. 4. What role do workplace cultures play in either exacerbating or mitigating these barriers? Our review has revealed a scarcity of research explaining the role played by workplace cultures in either exacerbating or mitigating employment barriers for people with psychosocial disability. Nonetheless, thematic analysis has revealed two themes relating to workplace cultures exacerbating employment barriers for people with psychosocial disability. These themes are: 1. alienating, divisive and unaccommodating workplace cultures where employees with psychosocial disability are avoided; and 2. A doubting culture that unfairly questions the employability of people with mental impairments. Two themes captured workplace cultures that mitigate employment barriers for people with psychosocial disability. The themes included: 1. collegiate and accommodating culture that values diversity and inclusion; and 2. inclusive workplace culture through leadership. We conclude with a message that barriers confronting the employment of people with psychosocial disability can be entwined (e.g., psychosocial disability related challenges exacerbated by inflexible workplace processes and practices). Furthermore, we have noted entanglements also occurring among policy measures that attempt to remove or lessen these barriers (e.g., use of technologies such as remote access advancing workplaces that are flexible and accommodating of people with psychosocial disability). Australian policymakers are therefore advised to be aware of these kinds of complications, with employment barriers and the measures to redress them not to be looked at in isolation. Finally, we make the call for investment in research that can help to fill in the wide-ranging research gaps that have been identified by our scoping review. 2023-10-10T00:00:00Z https://hdl.handle.net/2123/31744 The social meanings of choice in living-with advanced breast cancer Lewis, Sophie; Kenny, Katherine; Broom, Alex; Kirby, Emma; Boyle, Frances Individual choice is valorised as a core social value; yet the necessity and desirability of making choices takes on new significance for people living with incurable cancer who are required to make often difficult decisions about treatment, care and family life, amidst considerable vulnerability and precariousness. There has been comparatively little exploration of how choice is negotiated and made meaningful under the spectre of incurability and a contracted future. In this paper, drawing on multiple qualitative interviews with 38 women with metastatic breast cancer, we explore how they experience and give meaning to choice in relation to their health (and beyond) in their daily lives. Our analysis highlights that while exercising choice was sometimes a concealed or silent pursuit, choice was always a socially negotiated and temporally unfolding process, nested within relational and interpersonal dynamics. Choices were also often constrained, even foreclosed, due to situational and relational dynamics. Yet even in the absence of choice, the idea of choice-as-control was discursively embraced by women. We argue that greater attention is needed to the affective, temporal and economic dimensions of choice, and how treatment decisions are asymmetrically structured when considered within the normative context of cancer. 2021-01-01T00:00:00Z https://hdl.handle.net/2123/31743 The incurable self: Negotiating social bonds and dis/connection with metastatic breast cancer Lewis, Sophie; Newtown, Giselle; Kenny, Katherine; Boyle, Frances As the culture of silence that once surrounded cancer has gradually given way to greater public awareness, normative visions of what cancer survivorship should entail have proliferated. These visions emphasise positivity and perseverance in pursuit of cure. While these visions provide comfort to many, for people with metastatic cancer the emphasis on cure can undermine their sense of belonging to the broader collective of people living-with cancer. Drawing on semi-structured interviews with 38 Australian women living with metastatic breast cancer, we explore how incurable cancer inflects understandings of self and transforms interpersonal relationships. Extending ideas around biosociality and belonging, we explore the tenuousness of social bonds, revealing how (in)visibility, (in)authenticity and (in)validation circulate within the daily lives of women with metastatic breast cancer. We conceptualise accounts according to four social bonds: (1) threatened bonds where a relationship is strained by misunderstanding, (2) severed bonds where a relationship is ruptured due to misunderstanding, (3) attuned bonds whereby a relationship is based on shared identification, and (4) flexible social bonds when a relationship is based on mutual understanding. More broadly, we illustrate the persistence of normative visions of cancer survivorship and their enduring effects on those whom such visions exclude. 2023-01-01T00:00:00Z https://hdl.handle.net/2123/29557 Breaking down Barriers: Co-designed recommendations to reduce stakeholder identified NDIS access barriers for people with psychosocial disability Hancock, Nicola; Mellifont, Damian; Scanlan, Justin Newton; Hamilton, Debra; Smith-Merry, Jennifer The Issue The National Disability Insurance Scheme (NDIS) commenced in 2016 and is designed to support people with all types of disability including those living with psychosocial disability. However, many thousands of Australians living with psychosocial disability have still not applied to access the Scheme and are consequently missing out on their right to receive valuable NDIS supports to advance their social and economic inclusion. The Project Aims The project aims were to work with stakeholders to 1. Understand the barriers to applying to the NDIS for people living with psychosocial disability, and 2. Identify solutions to remove or reduce these barriers and to synthesise these into a practical set of stakeholder-informed recommendations. Across all states and territories, 386 stakeholders collaborated on this project. Stakeholders included: 1. people living with psychosocial disability of mental distress; 2. their family and friends, and 3. workers and organisations engaged in supporting or advocating for them. The Approach The project was conducted over three phases: 1. A scoping review of literature to identify previously reported barriers to applying to the NDIS for people with psychosocial disability – used to inform phase 2 survey. 2. A national survey to identify current, stakeholder informed and prioritised barriers. 3. Co-design of practical, lived experience informed recommendations to address NDIS access barriers with stakeholders. The Barriers Stakeholders described ten broad and interconnected NDIS access barriers for people with psychosocial disability. These included: 1. Key information about NDIS is confusing or not accessible 2. Hard to get supports to help to apply - formal (services) and informal (family and friends) 3. Hard to obtain evidence required by the NDIA 4. Application process is too long, complicated, and inflexible 5. Application process is harmful to mental health and well-being 6. The application process does not accommodate for mental illness and psychosocial disability 7. The negative reputation of NDIA staff and culture 8. Disconnect between ‘disability’ and ‘recovery’ 9. Personal beliefs, fears and stigma, and 10. It is not worth it – NDIS won’t meet my needs anyway. Each of these is detailed within the report. The Recommendations Seven recommendations were identified, reviewed and refined by stakeholders. These recommendations are practical, lived-experience informed actions to address NDIS access barriers faced by people living with psychosocial disability. 1. Build, maintain and disseminate accurate, up-to-date, easily accessible information - Update, enhance and build upon best currently available information. Invest in and maintain the update of a single national source of information. Enhance the dissemination of this information including easy read downloadable one-pagers that can be printed and paper-based fliers to maximise accessibility. 2. Co-develop and co-deliver systemic training and establish workforce support champions – Co-develop and deliver continually available training for health and community service providers. GPs, public, community and private mental health, disability and social services require ongoing access to training about the psychosocial stream of the NDIS. Workforce support champions will provide expert support and guidance to complement this training so that workers can provide accurate and helpful support, advice and evidence to people who are considering or are applying for the NDIS. 3. Establish navigator positions – independent and psychosocial specific - Create a clear, independent NDIS Psychosocial specific Navigator role to assist individuals, family members and service providers throughout the NDIS application process. 4. Cover out-of-pocket expenses - Create funding streams or models of reimbursement to ensure that people have equitable access to the experts required to provide evidence of psychosocial disability without incurring out-of-pocket expenses. 5. Commission and fund an independent evaluation of the application process specifically for people with psychosocial disability - Independent evaluation of the impacts of: a) recent legislative changes; b) the future implementation of the Recovery Framework; and c) adoption and future implementation of the recommendations within this report, on the experiences of the NDIS application process for people living with psychosocial disability. 6. Co-develop and co-deliver recovery and psychosocial disability training for a. NDIA staff, b) NDIA partner staff (Local Area Coordinators - LACs), and c) NDIS service provider staff (community managed/controlled organisations) - All staff within these 3 distinct workforces need to have access to recovery-oriented, trauma-informed psychosocial disability training and education that is co-developed and co-delivered with people with psychosocial disability. 7. Commission and fund an independent review of NDIA culture and workforce issues - Review the impact of implementing the NDIS Psychosocial Recovery-Oriented Framework agenda on NDIA staffing practice and cultural issues. Conclusion Almost 400 stakeholders partnered with us to identify current barriers to applying for NDIS support. They then engaged with us to develop seven key, lived experience informed, recommendations to address those barriers. These seven practical action-oriented recommendations need urgent implementation to enable the people living with psychosocial disability who are most disadvantaged and most in need of NDIS support to be able to apply for that support. The feasibility and value of each of these recommendations is evidenced by them being raised across numerous previous national NDIS-focused reports including for example, the Tune Review and the ‘Mind the Gap’ report. Today, stakeholders are asking for more than policymakers’ awareness of the barriers that deny much needed NDIS access – although these too are re-iterated and further detailed within this report. Stakeholders call for immediate investment in these practical actions to ‘break down barriers’ to accessing NDIS support and by doing so, improve the lives of many Australians living with psychosocial disability. 2022-09-16T00:00:00Z https://hdl.handle.net/2123/28467.2 Disability and Wellbeing Monitoring Framework: Baseline indicator data for Australians aged 18-64 years Centre of Research Excellence in Disability and Health This report presents the first national data using the Disability and Wellbeing Monitoring Framework and Indicators developed by the National Health and Medical Research Council Centre of Research Excellence in Disability and Health. The Monitoring Framework provides a comprehensive structure for measuring and reporting inequalities between people with and without disability in relation to health and the social determinants of health. Baseline indicator data are presented for people aged 18 to 64 years with disability in Australia, making comparisons with people without disability where data are available. Indicator data are disaggregated by gender (female/male). Where possible, data are also reported for the subgroup of people with ‘severe disability’. This report also highlights gaps and limitations in national data related to people with disability. The list of data gaps in each Framework domain serves as a guide for ongoing efforts in data development to build a more comprehensive evidence base to support closing the disability inequality gap. Measuring inequality is essential for identifying the barriers faced by people with disability in exercising their human rights. Evidence of disability-related inequalities can inform action to remove barriers and reduce inequalities. Data in this report, and in subsequent reports that monitor change over time, will help to identify policy priorities, inform policy development, evaluate the effectiveness of policies and programs, and hold key actors to account. 2022-05-02T00:00:00Z https://hdl.handle.net/2123/18362 Telepractice: A legitimate choice for quality disability services Hines, Monique; Bulkeley, Kim; Lincoln, Michelle; Cameron, Sue; Dudley, Simone The Wobbly Hub Rural Research Team has heard repeatedly from families living in rural and remote Australia how difficult it is to access allied health therapy services. As a result, many children with disabilities living in these areas do not receive the therapy services they need. Telepractice has the potential to increase access to therapy in rural and remote areas. However, some parents, carers, and allied health therapists are unsure or even skeptical about whether it is possible to deliver a quality therapy service over the internet. In this video, we present what we have learned from our research conducted with our partners at Therapy Connect, including facts that dispel three myths about telepractice. 2018-06-14T00:00:00Z https://hdl.handle.net/2123/17369 Telepractice for children with complex disability: Guidelines for quality allied health services Hines, Monique; Bulkeley, Kim; Lincoln, Michelle; Cameron, Sue; Dudley, Simone Telepractice has the potential to spread allied health professionals’ (AHPs’) reach further into rural Australia. There are fewer AHPs in rural and remote Australia compared to metropolitan areas. This means that children with disabilities living in rural areas may not receive the therapy services they need. Providing therapy services via telepractice could reduce these inequities and ensure that all children receive the supports they need, regardless of where they live. Telepractice guidelines in allied health rightly insist that telepractice services should be equivalent in quality to those delivered in-person (Speech Pathology Australia [SPA], 2014). Therefore, telepractice services should not simply be an option of last resort, but should be a quality option for disability services. Yet, how can AHPs ensure that their telepractice services are equivalent in quality to those they deliver in-person? As a first step towards exploring this issue, we conducted a research study funded by the auDA Foundation in 2016-17, and in partnership with Therapy Connect, a private allied health practice. We collected information about the allied health telepractice services received by four children with complex disabilities and their families living in rural or remote Australia. We found that AHPs, despite being geographically remote from children and families, could deliver services consistent with contemporary practice and supported children to achieve positive, functional outcomes. We identified the essential components of successful telepractice models needed to achieve real outcomes for children with disabilities through this and other research conducted by the Wobbly Hub Rural Research Team. Our key learnings from this research informed the development of guidelines for telepractice delivery of allied health services to children with complex disability, as summarised in this document. 2017-11-02T00:00:00Z https://hdl.handle.net/2123/17243 Telepractice for children with complex disability: Quality service delivery Hines, Monique; Bulkeley, Kim; Lincoln, Michelle; Cameron, Sue; Dudley, Simone Telepractice is the delivery of therapy services at a distance by linking clinicians to clients, carers, or others, via technology such as web-based videoconferencing. Funded by auDA Foundation in 2016-17, and in partnership with TherapyConnect, a private allied health practice, we collected information about the telepractice services received by four children with disability and their families living in rural or remote Australia. We found that quality allied health services can be provided via telepractice to children with complex disability and their families. We also identified essential components of successful telepractice models. Project brief 2017-10-04T00:00:00Z https://hdl.handle.net/2123/16566 Developing the rural health workforce to improve Australian Aboriginal health outcomes: a systematic review Gwynne, Kylie; Lincoln, Michelle Objective: The aim of this study was to identify evidence based strategies in the literature for developing and maintaining a skilled and qualified rural and remote health workforce in Australia to better meet the health care needs of Australian Aboriginal and/or Torres Strait Islander (hereafter Aboriginal) people. Methods: A systematic search strategy was implemented using the PRISMA statement and checklist. Exclusion and inclusion criteria were applied, and 26 papers were included in the study. These 26 papers were critically evaluated and analysed for common findings about the rural health workforce providing services for Aboriginal people. Results: There were four key findings of the study: the experience of Aboriginal people in the health workforce affects their engagement with education, training, and employment; particular factors affect the effectiveness and longevity of the non-Aboriginal workforce working in Aboriginal health; attitudes and behaviours of the workforce have a direct effect on service delivery design and models in Aboriginal health; and student placements affect the likelihood of applying for rural and remote health jobs in Aboriginal communities after graduation. Each finding has associated evidence-based strategies including those to promote the engagement and retention of Aboriginal staff; training and support for non-Aboriginal health workers; effective service design; and support strategies for effective student placement. Conclusions: Strategies are evidenced in the peer-reviewed literature to improve the rural and remote workforce for health delivery for Australian Aboriginal people and should be considered by policy makers, funders and program managers. This is the peer reviewed version of the following article: Gwynne, K., & Lincoln, M. (2016). Developing the rural health workforce to improve Australian Aboriginal health outcomes: a systematic review. Australian Health Review. Advance online publication. doi: 10.1071/AH15241, which has been published in final form at: http://www.publish.csiro.au/ah/Fulltext/AH15241 2016-01-01T00:00:00Z https://hdl.handle.net/2123/16521 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 Gallego, Gisselle; Chedid, Rebecca Jean; Dew, Angela; Lincoln, Michelle; Bundy, Anita; Veitch, Craig; Bulkeley, Kim; Brentnall, Jennie Objective: To explore the characteristics of allied health professionals (AHPs) working with people with disabilities in western New South Wales. Design: A cross-sectional survey was conducted using an online questionnaire. Setting: Rural western NSW. Participants: AHPs including physiotherapists, speech pathologists, occupational therapists and psychologists (“therapists”) working with people with disabilities. Main outcome measure: Questionnaire Results: The majority of respondents were female (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 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). Conclusions: 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. This is the peer reviewed version of the following article: Gallego, G., Chedid, R. J., Dew, A., Lincoln, M., Bundy, A., Veitch, C., Bulkeley, K., & Brentnall, J. (2015). 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. Australian Journal of Rural Health, 23(4), 227-234. doi:10.1111/ajr.12163, which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1111/ajr.12163/full. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving. 2015-01-01T00:00:00Z https://hdl.handle.net/2123/16485 Boosting the recruitment and retention of new graduate speech-language pathologists for the disability workforce Hines, Monique; Lincoln, Michelle New graduate speech-language pathologists (SLPs) will play an integral role in meeting the anticipated growth in demand for a highly skilled disability workforce under the National Disability Insurance Scheme (NDIS). Despite the promise of the NDIS for making a real difference to the lives of people living with disability in Australia, implementation will have major implications for factors known to support new graduate recruitment and retention in the disability sector. In this article, we consider how the NDIS is likely to affect (a) clinical placements in disability while at university, and (b) access to clinical supervision and continuing professional development (CPD) in the workplace, and propose strategies to address these challenges. This article was first published in the Journal of Clinical Practice in Speech-Language Pathology, 18(2), 2016. The Speech Pathology Association of Australia owns the copyright in the article. 2016-01-01T00:00:00Z https://hdl.handle.net/2123/16483 Speech pathologists’ perspectives on transitioning to telepractice: What factors promote acceptance? Hines, Monique; Lincoln, Michelle; Ramsden, Robyn; Martinovich, Julia; Fairweather, Craig Little is understood about factors that influence speech-language pathologists’ (SLPs’) acceptance of telepractice. The aim of this study was to investigate SLPs’ perceptions and experiences of transitioning to a school-based telepractice service to identify factors that contributed to positive clinician attitudes. In-depth interviews were conducted with 15 SLPs who recently commenced providing school-based telepractice services. Interviews were recorded and transcribed verbatim, and thematic analysis was used to interpret interviews, with themes compared and contrasted across the group. Results indicated that although SLPs reported initially having mixed feelings towards telepractice, they later evaluated telepractice positively and viewed it as a legitimate service delivery mode. The overarching theme was that positive beliefs about telepractice were associated with perceptions of its consistency with the underlying principles of face-to-face therapy. In evaluating telepractice, SLPs considered: (a) therapeutic relationships with children; (b) collaboration with parents and teachers; (c) adequacy of technology and resources; and (d) access to support for learning telepractice. Therapy assistants and specific clinician attributes emerged as key strategies used to manage threats to acceptability. Preparation of SLPs transitioning to telepractice should address factors that support positive experiences with, and attitudes towards, telepractice to ensure that training achieves the greatest, most sustained change. The final, definitive version of this paper has been published in Journal of Telemedicine and Telecare, 21(8), 2015, published by SAGE Publishing. All rights reserved. Published version of the article is available at: http://journals.sagepub.com/doi/abs/10.1177/1357633X15604555 2015-01-01T00:00:00Z https://hdl.handle.net/2123/16484 Rural Carers of People with Disabilities: Making Choices to Move or to Stay Dew, Angela; Happ, Vicki; Bulkeley, Kim; Bundy, Anita; Lincoln, Michelle; Gallego, Gisselle; Brentnall, Jennie; Veitch, Craig When a child is born with, or an individual acquires, a disability in rural Australia, one of the decisions faced by the family is whether to remain living in a rural area or move to a larger metropolitan centre to access support services such as therapy. Understanding the factors that rural carers weigh up in making the decision to move or stay can inform the successful implementation of the National Disability Insurance Scheme (NDIS) in rural areas. Seventy-eight rural carers were recruited to participate in individual interviews or focus groups to discuss access to therapy services. Data were analysed using modified grounded theory involving thematic analysis and constant comparison. Participants made decisions about whether to stay living in their rural community or to move to a larger centre to receive therapy services according to three interlinked factors: personal factors related to their other family caring responsibilities; social factors including their informal support networks of family, friends, and community; and economic factors including employment and the time and cost of travelling to access specialist services in larger centres. These factors need to be considered in the roll-out of the NDIS to ensure that rural service users enjoy the benefit of a real choice to live in a rural area without reducing their access to support services. This is an Accepted Manuscript of an article published online by Taylor & Francis in Research and Practice in Intellectual and Developmental Disabilities on 27 May 2014, available online: http://www.tandfonline.com/10.1080/23297018.2014.908481 2014-01-01T00:00:00Z https://hdl.handle.net/2123/16482 Policy Development and Implementation for Disability Services in Rural New South Wales, Australia Dew, Angela; Gallego, Gisselle; Bulkeley, Kim; Veitch, Craig; Brentnall, Jennie; Lincoln, Michelle; Bundy, Anita; Griffiths, Scott Throughout their lives, all people, including those who have a disability, use a broad range of community services. Community services are important in assisting people with a range of impairments to participate in their communities. Vast geographic distances and a lack of therapists in rural and remote regions of Australia pose significant barriers for implementing policy aimed at supporting people with a disability. The aim of this study was to investigate the extent to which metropolitan-formulated policy encompassed the unique geographic, demographic, and sociocultural challenges experienced by rural therapists and people with a disability in New South Wales (NSW). Twenty-seven policy documents were reviewed and categorized into tier 1 (higher level strategic policies) and tier 2 (specific operational policies). Tier 1 policy documents provided consistent messages about the need to develop strategies and service delivery options to address geographic, cultural, and age-related barriers facing all people in NSW including those who have a disability. Tier 2 documents revealed a lack of attention to the practical differences between implementing the policy principles in metropolitan compared with rural areas. Study findings identify that the implementation of metropolitan-formulated policy does not always encompass the unique challenges experienced by therapists providing services to rural people with a disability and their carers. This study highlights the importance of “rural proofing” policy to consider people who live and work in rural areas. This is the peer reviewed version of the following article: Dew, A., Gallego, G., Bulkeley, K., Veitch, C., Brentnall, J., Lincoln, M., Bundy, A., Griffiths, S. (2014). Policy development and implementation for disability services in rural New South Wales, Australia. Journal of Policy and Practice in Intellectual Disabilities, 11(3), 200-209, which has been published in final form at: http://onlinelibrary.wiley.com/doi/10.1111/jppi.12088/full. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving. 2014-09-01T00:00:00Z https://hdl.handle.net/2123/16363 Should I stay or should I go? Exploring the job preferences of allied health professionals working with people with disability in rural Australia Gallego, Gisselle; Dew, Angela; Lincoln, Michelle; Bundy, Anita; Chedid, Rebecca Jean; Bulkeley, Kim; Brentnall, Jennie; Veitch, Craig Introduction: The uneven distribution of allied health professionals (AHPs) in rural and remote Australia and other countries is well documented. In Australia, like elsewhere, service delivery to rural and remote communities is complicated because relatively small numbers of clients are dispersed over large geographic areas. This uneven distribution of AHPs impacts significantly on the provision of services particularly in areas of special need such as mental health, aged care and disability services. Objective: This study aimed to determine the relative importance that AHPs (physiotherapists, occupational therapists, speech pathologists and psychologists – “therapists”) living in a rural area of Australia and working with people with disability, place on different job characteristics and how these may affect their retention. Methods: A cross-sectional survey was conducted using an online questionnaire distributed to AHPs working with people with disability in a rural area of Australia over a 3-month period. Information was sought about various aspects of the AHPs’ current job, and their workforce preferences were explored using a best–worst scaling discrete choice experiment (BWSDCE). Conditional logistic and latent class regression models were used to determine AHPs’ relative preferences for six different job attributes. Results: One hundred ninety-nine AHPs completed the survey; response rate was 51 %. Of those, 165 completed the BWSDCE task. For this group of AHPs, “high autonomy of practice” is the most valued attribute level, followed by “travel BWSDCE arrangements: one or less nights away per month”, “travel arrangements: two or three nights away per month” and “adequate access to professional development”. On the other hand, the least valued attribute levels were “travel arrangements: four or more nights per month”, “limited autonomy of practice” and “minimal access to professional development”. Except for “some job flexibility”, all other attributes had a statistical influence on AHPs’ job preference. Preferences differed according to age, marital status and having dependent children. Conclusions: This study allowed the identification of factors that contribute to AHPs’ employment decisions about staying and working in a rural area. This information can improve job designs in rural areas to increase retention. 2015-01-01T00:00:00Z https://hdl.handle.net/2123/16362 Factors affecting retention of allied health professionals working with people with disability in rural New South Wales, Australia: discrete choice experiment questionnaire development Gallego, Gisselle; Dew, Angela; Bulkeley, Kim; Veitch, Craig; Lincoln, Michelle; Bundy, Anita; Brentnall, Jennie Objective: This paper describes the development of a discrete choice experiment (DCE) questionnaire to identify the factors (attributes) that allied health professionals (AHPs) working with people with disability identify as important to encouraging them to remain practising in rural areas. Methods: Focus groups and semi-structured interviews were conducted with 97 purposively selected service providers working with people with disability in rural New South Wales, Australia. Focus groups and interviews were digitally recorded, transcribed, and analysed using a modified grounded theory approach involving thematic analysis and constant comparison. Results: Six attributes that may influence AHPs working with people with disability in rural areas to continue to do so were inductively identified: travel arrangements, work flexibility, professional support, professional development, remuneration, and autonomy of practice. The qualitative research information was combined with a policy review to define these retention factors and ensure that they are amenable to policy changes. Conclusion: The use of various qualitative research methods allowed the development of a policy-relevant DCE questionnaire that was grounded in the experience of the target population (AHPs). 2015-01-01T00:00:00Z https://hdl.handle.net/2123/16329 Multiple stakeholder perspectives on teletherapy delivery of speech pathology services in rural schools: a preliminary qualitative investigation Lincoln, Michelle; Hines, Monique; Fairweather, Craig; Ramsden, Robyn; Martinovich, Julia The objective of this study was to investigate stakeholders’ views on the feasibility and acceptability of a pilot speech pathology teletherapy program for children attending schools in rural New South Wales, Australia. Nine children received speech pathology sessions delivered via Adobe Connect® web-conferencing software. During semi-structured interviews, school principals (n = 3), therapy facilitators (n = 7), and parents (n = 6) described factors that promoted or threatened the program’s feasibility and acceptability. Themes were categorized according to whether they related to (a) the use of technology; (b) the school-based nature of the program; or (c) the combination of using technology with a school-based program. Despite frequent reports of difficulties with technology, teletherapy delivery of speech pathology services in schools was highly acceptable to stakeholders. However, the use of technology within a school environment increased the complexities of service delivery. Service providers should pay careful attention to planning processes and lines of communication in order to promote efficiency and acceptability of teletherapy programs. 2014-01-01T00:00:00Z https://hdl.handle.net/2123/14261 Policy Bulletin 5, 2015 - National Disability Insurance Scheme: Commonwealth Financial Arrangements up to 2019-20 Madden, Richard The National Disability Insurance Scheme (NDIS) was passed into law in early 2013 and pilot projects commenced on 1 July 2013, with full rollout to begin on 1 July 2016. The arrangements for financing the NDIS are complex and have not been brought together in the 2015-16 Commonwealth Budget papers (1) or those of earlier years. This Bulletin collects and connects available information on the Commonwealth Government’s NDIS financing arrangements up to and including the 2015-16 Budget, and the September 2015 Bilateral Agreements between the Commonwealth and NSW and Victoria. It builds on and updates information contained in an earlier paper (2). 2015-11-01T00:00:00Z https://hdl.handle.net/2123/13577 Submission to the Productivity Commission on Disability Care and Support 11 May 2011 Madden, Ros; Bundy, Anita; Clemson, Lindy; Einfeld, Stewart; Gilroy, John; Glozier, Nick; Kayess, Rosemary; Llewellyn, Gwynnyth; Madden, Richard; Manga, Robert; Mpofu, Elias; Stancliffe, Roger The authors of this submission welcome the Productivity Commission (PC) Draft Report and many of the key features of the proposed NDIS including: • the proposal for a scheme to provide long term care and support on an entitlement basis, • many of the accompanying features of the approach outlined, including the no fault basis of provision, the inclusion of aids and equipment, and the recognition of the need to include the full range of support services, • the acknowledgment of unmet demand and the need for significant new funding. Our comments on the draft report are made in the spirit that we endorse the main directions of the proposed scheme, which would be of great benefit to the Australian people, most especially people with disabilities and their families. We sincerely hope that governments will respond positively and promptly to the vision laid out in the Draft Report. We offer constructive criticism to maximise the chances of the scheme’s success, in terms of enabling people to access the supports they need, on an equitable basis. In this submission we focus on 5 areas: 1. Eligibility and assessment 2. Assessment Tools 3. Overcoming access and equity barriers for Aboriginal communities 4. Research and Data 5. Governance 2011-05-01T00:00:00Z https://hdl.handle.net/2123/13579 SUBMISSION ON THE NATIONAL DISABILITY INSURANCE SCHEME BILL 2012 TO THE SENATE STANDING COMMITTEES ON COMMUNITY AFFAIRS JANUARY 2013 Faculty of Arts and Sciences; Centre for Disability Research and Policy The NDIS is an important and needed reform to Australia’s disability system. There is much of merit in the NDIS Bill. Its implementation poses some challenges, to ensure a clear, sustainable and rights-based system, resulting in the outcomes desired by the community. This submission seeks to contribute to the current review of the draft NDIS legislation, and to the design and implementation of the Scheme. We have concentrated on areas where we believe we have something constructive to offer in the timeframe. None of our comments or suggestions implies a need for delay in the Scheme. Our suggestions are framed in the context of the United Nations Convention on the Rights of Person with Disabilities (CRPD), the technical framework of the International Classification of Functioning Disability and Health (ICF) and an entitlement-based service system which supports people’s rights to participate in all areas of life and seeks to provide an environment which enables these rights to be exercised. Our main suggestions are as follows:  Section 23: Residence criteria should be based on Medicare criteria, to promote the equity of the NDIS in the wider service system.  Sections 24, 25, 27: Disability requirements and related rules should be based on an accurate representation of the ICF. Embedding the old linear causal model of disability in the Bill will lead to confusion, inefficiency and challenge. The idea of ‘permanent impairment’ is not helpful and should be changed. New provisions for these Sections are proposed. Some suggestions about the design of assessment instruments are included.  Section 26: Our discussion provides some ideas about why and how additional expert reports may assist the process and the person with disability involved. A medical examination should not become routinely sought and nor should a health condition become part of the eligibility criteria.  Long-term cost containment suggestions are made – including developing models which better estimate the costs of reasonable and necessary supports, as the NDIS matures and experience builds. Such measures are needed, to protect the universality and sustainability of the Scheme.  Chapter 5 on compensation should be removed and replaced by government-togovernment agreements and compensation reforms, to preserve the primacy and universality of the NDIS, and to avoid the costs of adjustment being borne by individual people with disabilities.  National statistics must be published as part of the Agency’s responsibilities and as part of its public accountability for outcomes from the Scheme. As recommended by the Productivity Commission, data should be made available for research. Data should be based on the ICF so that it relates to population survey data and data from other sources based on this international standard. Such data must include information on the environment of people and the service system surrounding the ICF. A critical part of the Australian environment is information and communication Submission on NDIS Bill 25 January 2013 2 technologies; at present, however, there are shortfalls in access of Australians with disabilities to digital technologies — a 'disability digital divide'. Nationally, we have little precise idea about the scale, scope, and impact of this digital exclusion. This will affect, but can be remedied by, the administration of the Scheme.  There should be at least 3 people on the NDIS Board with experience or knowledge of the provision or use of disability services (Section 127).  There are lessons to be learned from international experience, service systems and the wider literature. Implications for the NDIS frameworks, principles and terminology are discussed in our final section. 2013-01-01T00:00:00Z https://hdl.handle.net/2123/13575 Submission to the Productivity Commission - National Disability Long ­term Care and Support Scheme Madden, Richard This submission encourages and accepts the premises of a National Disability Long‐term Care and Support Scheme (the National Disability Scheme): • No fault • Entitlement based • Support provided in accordance with need for support • Focused on provision of and encouragement for habilitation and rehabilitation • Providing support for services to people with a disability, rather than income support • Integrates people with disabilities in society • Administratively simple and timely The following matters will be addressed • Criteria for the National Disability Scheme should be those set out by Woodhouse in 1973‐4 • Need to set aside provisions of current compensation systems that do not meet the principles of the NDS • Access to Medicare and other community wide health financing systems for all Australians requiring medical, hospital, medicines and other health services • The need for improved funding for habilitation and rehabilitation services • At the commencement of the Scheme, coverage should be limited for people first claiming after age 55 • Funding • Education and training 2010-08-01T00:00:00Z https://hdl.handle.net/2123/13576 Submission to the Productivity Commission on Disability Care and Support Madden, Ros; Bundy, Anita; Kayess, Rosemary; Llewellyn, Gwynnyth; Madden, Richard; Manga, Robert; Mpofu, Elias; Stancliffe, Roger The authors of this submission welcome: • the proposal for a scheme to provide long term care and support on an entitlement basis, • many of the accompanying features of the approach outlined, including the no fault basis of provision, the inclusion of aids and equipment, and the recognition of the need to include the full range of support services, • the acknowledgment of unmet demand and the need for significant new funding. 2010-01-01T00:00:00Z https://hdl.handle.net/2123/13580 Eligibility, the ICF and the UN Convention: Australian perspectives Madden, Rosamond H; Glozier, Nick; Mpofu, Elias The UN Convention on the Rights of Persons with Disabilities, in Australia, acts as a philosophical and moral statement and framework guiding integrated and strategic policy across the nation. Broad policy agreement has been reached by governments, and both the government and non-government sectors are developing strategies for implementation or evaluation. There is however a need for a more integrated approach to disability policy and information, reflecting all three components of the Italian project: • legislation and a high level philosophical framework and policy guide; • a technical framework that can underpin specific policies and programs aiming to achieve the major goals; and , • a language and set of tools, relating to both the above, that provide infrastructure for assessment methods and information systems. The International Classification of Functioning, Disability and Health (ICF) is the ideal tool to support the latter two components, consistent with the UN Convention. While the ICF has been used as the basis for national data standards, in population surveys and in the national data collection on disability support services, there is considerable scope for greater use of it, including using all domains of the Activities and Participation and the Environmental Factors component for policy, information and service provision, to advance a disability-inclusive society. Information available from the income support system and from generic services could be enhanced by reference to the ICF components. It would be of significant national value in Australia, especially as a ‘continuum of care’ is desired, if consistency of concepts and information were expanded across health and social welfare sectors. It would then be possible to obtain consistent data from health, aged care, disability and community services systems about key aspects of health and functioning, building a consolidated picture of access and experience across these sectors. Without attention to all three components of the Italian project and continuing effort to meet the challenges identified in this paper, it will not be possible to determine whether the goals of Australia’s National Disability Agreement or the ambitions of the Convention are achieved. 2010-04-01T00:00:00Z