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Exploring the intricate relationship between individual and collective experiences, this study explores dignity from the perspectives of people with disability. Using an extreme citizen science approach, we engaged people with disability as active partners in gathering data through qualitative surveys and focus groups. Framework Analysis was employed to ensure the validity of findings while privileging the voices of people with lived experience of disability. Dignity was contingent on the acknowledgement of personhood and the delivery of human rights. Our research identified five key aspects to maintain and protect dignity: (1) acknowledging personhood; (2) recognising people with disability as decision-makers of their lives; (3) realising the right to access information; (4) maintaining the right to privacy; and (5) eliminating or minimising barriers to accessibility and inclusion. Undignified experiences that resulted from a lack of acknowledgement negatively affected participants' wellbeing, and healthcare settings were identified as particularly challenging environments for dignity. These findings have significant implications for healthcare systems and services within an international and interdisciplinary context. They emphasise the need for adaptable, flexible services, co-designed with people with lived experience of disability. Addressing organisational constraints, resource limitations, and expectations is paramount to ensuring dignity is maintained through the acknowledgement of personhood and safeguarding of human rights., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Little is known about why people with disability choose to take part in disability research and what their experience is like. Knowledge of this may help researchers and research ethics committees improve the empowered and ethical participation of people with disability in disability, healthcare, and human service focussed research. This cross-sectional mixed-methods study explored the perspectives and experiences of a group of Australian adults with disability regarding their involvement in research. Online surveys (N = 29) and follow-up interviews (N = 15) were conducted. The study found the decision to participate was a complex appraisal of benefit to self and others, research relevance, value, comfort, convenience, safety and risk. The attitudes and behaviours of researchers in cultivating trust by adopting an empathic approach to the conduct of disability research appear to be an important aspect of participant experience. Research ethics committees may benefit from knowledge of the 'microethical' moments that occur in such research.

Introduction: Engaging citizens and patients as research partners is receiving increasing emphasis across disciplines, because citizens are untapped resources for solving complex problems. Occupational therapists are engaging in inclusive research, but not always in equitable partnership. Moving beyond inclusive research to a dignified framework for research prioritises lived experience and human rights in health research., Methods: Using nominal group technique over a series of three working group meetings, eight experts, including three with lived experience of disability and research, prioritised principles and steps for conducting dignified rehabilitation research in partnership with citizens with disability., Findings: Embedding transparency, accessibility and inclusion, dignified language, and authenticity throughout research were integral to maintaining dignity and safety for citizens with disability engaged in research. The Dignity Project Framework encompasses five phases, namely, (1) vision, (2) uncover, (3) discuss, (4) critical reflection, and (5) change, which address the prominent criticisms of the disability community about research and embed the principles of importance into research practice., Conclusion: The framework builds on inclusive research frameworks to a human rights-based, dignified framework for extreme citizen science. Grounding disability in contemporary conceptualisations and providing a method for democratising knowledge production provide occupational therapists with a method for dignified partnership with citizens with disability., (© 2022 The Authors. Australian Occupational Therapy Journal published by John Wiley & Sons Australia, Ltd on behalf of Occupational Therapy Australia.)

Planning for discharge and supports beyond hospital for people with disability in Australia involves negotiation of complex care systems. The aims of this study were to examine how the individualised support pathway of the National Disability Insurance Scheme (NDIS) functioned for admitted people with disability who required funded support to leave hospital; and to explore the factors indicative of increased care complexity associated with delays. Retrospective chart reviews of people with disability were conducted. Data on 198 eligible patients were extracted, including NDIS plan approval and plan implementation timeframes and discharge delay. Participants' median age was 52 years (interquartile range = 41-59). The most common disability type was spinal cord injury (41%). The median NDIS plan approval and implementation timeframes were 89 days (63-123) and 39 days (8-131), respectively, and most participants (72%) experienced a delayed discharge. A longer plan implementation timeframe was associated with higher odds of a delay in discharge (OR = 3.41, 95% credible interval = 1.56, 7.11). We did not find any evidence that plan approval timeframe, or any other variable indicative of increased care complexity, was associated with discharge delays. Our findings suggest that a delayed discharge will likely be the reality for people with disability who require funded supports to leave hospital. They also suggest that NDIS plan implementation is a major challenge and a focus for policy and practice improvements. To target solutions, further research should focus on the interactions and negotiations of the multiple intermediaries involved and resource and structural impediments to plan implementation., (© 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.)

Some people with disabilities may have greater risk of contracting COVID-19 or experiencing worse outcomes if infected. Although COVID-19 is a genuine threat for people with disabilities, they also fear decisions that might limit lifesaving treatment should they contract the virus.During a pandemic, health systems must manage excess demand for treatment, and governments must enact heavy restrictions on their citizens to prevent transmission. Both actions can have a negative impact on people with disabilities.Ironically, the sociotechnical advances prompted by this pandemic could also revolutionize quality of life and participation for people with disabilities. Preparation for future disasters requires careful consideration.

Purpose: To investigate the role of philanthropic micro-grants (maximum of $10,000) in the provision of aids and equipment for adults (aged 18-65 years of age) with complex disabilities and examine key trends in aids and equipment requests., Method: This study examined, through quantitative and qualitative analysis, aids and equipment requests (n = 371 individual applications as represented by 136 service organisations in three Australian states) received by a not-for-profit (NFP) organisation across five consecutive years of an innovative micro-grants scheme., Results: Findings highlight that living situation (living with family or living independently) significantly influences the nature of requests for respite, aids, equipment and home modifications. Specifically, people with complex disabilities living with their families require greater combined service provision (higher equipment need, respite support, home modifications) than those living independently (equipment need only). Type of disability did not influence request type. Qualitative data further indicated the "last resort" nature of respite requests, particularly for younger applicants (under 45 years of age) indicating critical unmet needs in the community., Conclusions: Results demonstrate the vital role of NFP organisations and philanthropic funds in supporting daily lifestyle aids and equipment (including respite) that might otherwise not be funded for people with complex disabilities. Although preliminary in its scope and prior to implementation of a National Disability Insurance Scheme (NDIS) in Australia, findings suggest both opportunity and risk to the uptake of community-based micro-grant funding: opportunity for users through the provision of essential aids and lifestyle supports, and risk through over-subscription and devolving of responsibility for critical support resources from public sector., Implications for Rehabilitation: The aids and equipment needs of adults under the age of 65 appear to have been underestimated, poorly defined and under-serviced. Service users need more assistance for their carers (i.e. equipment to facilitate safe lifting, urgent breaks from care routines) as well as aids, equipment and modifications to help them to live a more normal life (e.g. going to the beach). Living situation (i.e. independently or with family) significantly influences the nature and extent of aids and equipment requested. Supporting adults up to the age of 65 to live more independently would positively influence carers and family, while at the same time providing opportunities for more targeted personal care supports. Philanthropic and not-for-profit schemes are helping to address these needs through micro-grant schemes for purchases under $10 000, but sustainability is questioned. The introduction of Australia's National Disability Insurance Scheme (NDIS) presents an opportunity to consider the lifestyle needs of service users and carers, and determine who is best placed to address them.

Unlabelled: Inadequate community housing and support for adults under 65 years with complex health needs often leads to residential aged care placement. In 2006, Australian government authorities funded a range of supported housing alternatives for younger adults requiring access to 24-hour support including the Integrated Living Model (ILM). The ILM provided purpose-built accommodation for 10-20 people and represented a change in practice from traditional 24/7 nursing care toward a more holistic, individualised approach., Aim: Examine workforce challenges in implementing disability service standards (DSS) within an ILM., Method: Thematic Analysis of workforce practices was conducted by coding staff interviews (n = 20) against the prevailing DSS., Results: Emerging challenges identified against each standard were: expectation management; coordination; client expertise; blurred boundaries; role confusion; valued status beyond client; unclear practice boundaries; multilayered communication; reflective practices; and mixed service model responses., Conclusion: This ILM setting requires workforce development in rights-based practice, personalisation and effective communication. Key paradigm shifts are also recommended.

The aim of this research was to examine first-person accounts of the significance of place for young adults (aged between 18 and 65 years of age) with complex disabilities moving into purpose-built residential care accommodation. Interviews with residents, family members and staff working at the accommodation site considered the impact of the physical, care and social environment on the experience of place. Five elements of experience were identified, including (a) freedom and self-expression, (b) designed for disability (c) flexible and responsive care environment, (d) establishing relationships and (e) defining spaces. Findings confirmed the need for a 'value added approach' to housing and support for young adults with complex disability. A value added approach extends the importance of place beyond the physical context for people with complex conditions and incorporates essential symbolic and relational concepts of value--being of value (for family members), having value (for residents) and giving value (for staff). The framework of the therapeutic landscape is applied within the context of supported residential care and the factors that promote a healing environment are examined., (Crown Copyright © 2012. Published by Elsevier Ltd. All rights reserved.)