Dignity and the Importance of Acknowledgement of Personhood for People With Disability.

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.

Disability Research in Australia: Deciding to Be a Research Participant and the Experience of Participation.

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.

The Dignity Project Framework: An extreme citizen science framework in occupational therapy and rehabilitation 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.

Planning with care complexity: Factors related to discharge delays of hospitalised people with disability.

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.

Exploring the role of nurses in inpatient rehabilitation care teams: A scoping review.

BACKGROUND: The cohort of people requiring in-hospital rehabilitation continues to age and experience more co-morbidities. How these changes impact the role of the rehabilitation nurse within rehabilitation teams is not clearly established. AIM: Describe how nurses work within rehabilitation teams in hospital-based rehabilitation units. DESIGN: Scoping review METHODS: Four datasets, Medline, CINAHL, Web of Science and EMBASE were searched. Studies were selected if they focused on nurses' roles in rehabilitation teams and were conducted in adult inpatient settings. Data were extracted and analysed by two researchers. An inductive descriptive approach was used for the analysis. Themes were finalised in a consensus meeting with the team. RESULTS: Twenty-four papers from Europe, United Kingdom, Canada and Australasia were found. Two themes were derived from the data: 'Nursing work is essential but rendered invisible' and 'Fluctuating teams and patient goals are momentarily stabilised through formal structures and processes'. Nurses were found to be working with three models of care, clinical, personal and rehabilitation within a culture focused only on rehabilitation. Nurses predominantly used relationship-based ad hoc communication strategies with other team members. Relationship-based interprofessional communication momentarily stabilises nurses' rehabilitation practice. CONCLUSION: Reframing rehabilitation nursing, to acknowledge the multiple models of care and communication mechanisms that are used in interprofessional teams is required. Building the team's capacity to work collaboratively in the fluctuating environment of rehabilitation requires attention to how intersubjectivity can be developed. TWEETABLE ABSTRACT: Scoping the role of nurses in rehabilitation care teams.

Entering into a system of care: A qualitative study of carers of older community-dwelling Australians.

Informal carers provide the majority of care to older Australians and play an essential role in assisting older people with complex care needs to remain living in their own homes. As such, carers are increasingly faced with systemic responsibilities, including coordinating services across multifaceted health and aged care systems and negotiating treatment and supports. The aim of this study was to explore how systemic complexity and associated work is experienced by carers of older adults and what personal capacities carers draw on in managing the systemic work. A descriptive phenomenological approach guided the research. Semistructured interviews were conducted with 16 carers of community-dwelling older adults with complex care needs recruited through a local health service. Giorgi's phenomenological data analysis methods (1997) was utilised for the data analysis. Two main themes were derived from the analysis: Becoming part of the caring system and Mastering the caring system. The findings indicate that the majority of carers perceived the work of interacting with multiple systems and services as a burden and an onerous obligation. Furthermore, change in the health or social circumstances of the older adult amplified differences in the nature of the systemic work and concomitantly revealed differences in carers' capacities. This paper reveals that the caring system is in some sense disposed to create disparities, as carers' specific capacities were integral to mastering the systemic work. An understanding of informal care work that supports older people to live in the community can assist health care professionals and service providers to better identify carer requirements and assess carer capacity to manage the work.

Case study discussion: The important partnership role of Disability Nurse Navigators in the context of abrupt system changes because of COVID-19 pandemic.

BACKGROUND: Rapidly implementing telehealth-facilitated healthcare services in a COVID-19 environment generates relational challenges for people with intellectual disability. Disability Nurse Navigators assume a critical intermediary role between the healthcare system and this population. AIM: To discuss the impact that rapid service change, in response to the COVID-19 pandemic, can have on people with disability and the work of Disability Nurse Navigators who support them. METHODS: This clinical case discussion comprises two parts. First, a discussion on the impact that COVID-19 pandemic management has had on one person with an intellectual disability is framed using intersecting notions of cumulative complexity and Burden of Treatment Theory. Following, through a Latourian lens, the role of the Disability Nurse Navigator is explored. FINDINGS: During COVID-19, telehealth has proved an important tool for healthcare continuity. Yet, for some people with some disabilities who live with additional and cumulative layers of health and social complexity, the healthcare workload that is transferred to them is exacerbated as they try to interact with disabling infrastructure. DISCUSSION: The Disability Nurse Navigator recognises that people with disability are not independent of the technologies and structures that make up the healthcare system but that they are mutually constitutive. The Disability Nurse Navigator thus works to stabilise the relationships between changed service provision and the healthcare workload and capacity of people with disability. CONCLUSION: The work of the Disability Nurse Navigator ultimately mitigated the disruption and additional treatment burden that is transferred to people with disability because of unintended consequences arising from the rapid introduction of service change.

Immediate and Long-Term Implications of the COVID-19 Pandemic for People With Disabilities.

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.

Consumer engagement in health services in Queensland, Australia: A qualitative study about perspectives of engaged consumers.

Successive health policies demonstrate unwavering commitment to partnering with consumers and communities. However, engaging consumers is complex and replete with priorities, perspectives and values that are firmly held, virtuous and different. In the context of political imperatives and different approaches to partnering with consumers in health services, we sought to explore consumers' experiences of engagement in public, private, primary care and non-government health services in Queensland, Australia. Participants identified themselves as consumers of health services and were currently, or had previously been, involved in planning, designing, delivering, monitoring and/or evaluating health services; were aged over 18 and consented to being involved. This qualitative study used semi-structured individual interviews to collect data which were analysed thematically. Four themes were identified, (a) authentic engagement and representation: asking, listening and acknowledging; (b) a continuum of consumer expertise; (c) contested engagement: transgressing health services thresholds of tolerance and (d) creating value for consumers and health services: reciprocity, trust, respect and remuneration. Findings demonstrated that 'rules of engagement' exist between consumers and staff employed in clinical, managerial, executive and administrative positions within health services in response to a legislated requirement that health services partner with consumers. The rules of consumer engagement centred on authenticity, transparency, expertise and individual capacity to transcend personal experience. If health services and the broader public are to fully benefit from safety and quality advances proposed by partnering with consumers, then it is essential that areas of contestation are identified and addressed.

Diary of a Mental Health Peer Worker: Findings From a Diary Study Into the Role of Peer Work in a Clinical Mental Health Setting.

Introduction: The importance of peer support workers in mental health care delivery has been extensively advocated for in mental health policy frameworks. However, there has been limited research examining the implementation of paid peer workers in clinical settings. This study explores the experience of paid peer support workers integrated within a clinically-operated community-based residential rehabilitation service for people diagnosed with a mental health disorder experiencing challenges living independently in the community. Methods: A general inductive approach was taken in the analysis of diaries completed by a newly employed peer workforce. These diaries focussed on what they viewed as significant interactions in fulfilling their role. Composite vignettes were generated to illustrate key themes. Findings: Thirty-six diaries were provided; these reported unplanned and spontaneously occurring interactions. Peer workers emphasized the importance of connecting with people while they were engaging in everyday activities as an opportunity for personal growth of the residents. The diaries also focussed on the peer workers' ability to connect and establish trust by sharing similar experiences with residents or family members. Peer workers also believed that they brought a different perspective than clinical staff and were able to refocus attention from clinical diagnoses and symptoms to other aspects of the resident's lives. Discussion: Peer support workers described their work as flexible, responsive, and adaptable to the resident's needs. They believed that their roles brought a different lens to interactions on the unit and fostered a more inclusive and personal way of working for the team. Conclusion: To ensure that peer workers can engage authentically with residents and family members, it is critical that the role and principles of peer work are valued and understood by all.

Informal care management after traumatic brain injury: perspectives on informal carer workload and capacity.

Purpose: Much of the support required to live in the community post-traumatic brain injury (TBI) is provided by informal carers. Understanding the nature of caregiving work is important to better support informal carers. This study explored the work being performed by informal carers, and factors impacting on their capacity to manage the workload.Method: Participants comprised 21 dyads each consisting of an adult with moderate to severe TBI and a nominated carer. Thematic analysis was done on semi-structured interviews with injured participants and carers during the 12-month period post-discharge from hospital.Results: Results revealed two main themes and eight subcategories: (1) The nature of informal care: describing informal care management work, (personal assistant work; care provider work; family support work; and emotional self-regulation work), and (2) Mediating factors that impacted people's capacity to manage workload (carer intrinsic factors; injured person characteristics; family circumstances; and changes over time.)Conclusion: Rehabilitation providers supporting people following TBI need to focus on broad family contexts; understand the nature of work being undertaken, and carer capacity to carry out that work; and be aware of the unique and changing circumstances of families to better support informal carers.Implications for rehabilitationRehabilitation services need to focus on broad family contexts rather than focus on the injured individual in isolation.Understanding the nature of the work being undertaken by informal carers, and their capacity to carry out that work is important when considering supports.Rehabilitation professionals need to consider and respond to the impact that changing circumstances have on the capacity of informal care networks to manage care workload.

Bonding and bridging social capital in the recovery of severe mental illness: a synthesis of qualitative research.

BACKGROUND: Social networks are known to have a major influence on the recovery journey of people with severe mental illness (SMI). AIMS: To understand the role of bonding and bridging social capital in the recovery process following SMI and to identify the barriers that prevent social networks from being mobilized. METHOD: A review of major electronic databases for qualitative studies from 2006 to 2015 (41 papers) was undertaken for thematic synthesis. RESULT: The main themes for bonding social capital included: a buffer for isolation and loneliness, variations depending on illness stages, balance in relationships and connections as a source of self-management. Main themes for bridging social capital comprised: feeling powerless and excluded from community/health care, social care beyond the illness, social care barriers and social inclusion through community groups. CONCLUSION: All those involved in the management of SMI must be aware of how social support networks hinder or contribute to recovery. People with SMI need opportunities to form reciprocal relationships and sustain supportive networks that can assist them to endure the challenges presented by SMI.

Making sense of self-care practices at the intersection of severe mental illness and physical health-An Australian study.

The poor physical health of people who experience severe mental illness (SMI) is an important public health issue that has been acknowledged, yet not properly addressed. People who live with SMI perform a myriad of complex tasks in order to take care of their physical health, while receiving unpredictable levels of support and assistance from health professionals. In this qualitative study, we aimed to uncover the kinds of work people with SMI do in order to look after their physical health. In a metropolitan area in Queensland, Australia, 32 people with lived experience of SMI participated in semi-structured, face-to-face interviews. Data were digitally recorded, transcribed verbatim and open coded. They were then themed using a constant comparative process. We found that people with SMI were engaged in a "rhythm of life with illness" that consisted of relatively short, acute and chaotic cycles of mental and physical illness, accompanied by much longer mental and physical illness recovery cycles. Participants engaged in three specific types of health-related work to manage these cycles: discovery work (and the associated role of the health professional); sense-making work to meaningfully interpret health and illness; and embedding work to become engaged self-managers of illness and producers of health. We discuss how varying levels of support from health professionals impact consumers' self-management of their physical and mental health; how health professionals influence consumers' experience of treatment burden; and implications for practice.

Living with ongoing whiplash associated disorders: a qualitative study of individual perceptions and experiences.

BACKGROUND: Whiplash associated disorders (WAD) are the most common non-hospitalised injury resulting from a motor vehicle crash. Approximately 50% of individuals with WAD experience on-going pain and disability. Results from intervention trials for individuals with chronic WAD are equivocal and optimal treatment continues to be a challenge. It may be that traditional quantitative measures included in treatment trials have not captured the full benefits patients experience through participation in an intervention. The aim of the present study was to explore participant subjective experiences and perceptions of living with on-going WAD. METHODS: Twenty-seven individuals with chronic WAD participated in a one-on-one, semi-structured individual telephone interview. All interviews were audio-taped, transcribed verbatim and data were analysed using an inductive thematic analysis process. RESULTS: Two themes emerged that described the experience of living with chronic WAD. First, all participants described navigating the healthcare system after their whiplash injury to help understand their injury and interpret therapeutic recommendations. Participants highlighted the need to 'find the right healthcare practitioner (HCP)' to help with this process. Many participants also described additional complexities in navigating and understanding healthcare incurred by interactions with compensation and funding systems. Second, participants described a journey of realisation, and the trial and error used to establish self-management strategies to both prevent and relieve pain. Participants described trying to understand the impact of their initial injury in relation to the gradual realisation that there may be on-going residual deficit. Seeking information from multiple sources, including personal experience gained through trial and error, was important in the search for acceptable management strategies. CONCLUSION: Recovery from a whiplash injury is an adaptive process and more than elimination of pain or disability, therefore may be different from common clinical patient reported outcomes. Early identification of patient understandings of pain, expectations of recovery, symptoms and therapy may help merge patient and HCP understandings. Additionally, helping individuals to recognise symptom triggers and develop appropriate strategies to minimise triggers may actively engage patients in their recovery. Finally, acknowledgement and validation of the whiplash injury by HCPs is seen by many as a necessary step in the recovery process.

Nurses experiences of delivering care in acute inpatient mental health settings: A narrative synthesis of the literature.

Inpatient psychiatric care requires a balance between working with consumers' priorities and goals, managing expectations of the community, legal, professional and service responsibilities. In order to improve service delivery within acute mental health units, it is important to understand the constraints and facilitating factors for good care. We conducted a systematic narrative synthesis, where findings of qualitative studies are synthesised to generate new insights. 21 articles were identified. Our results show that personal qualities, professional skills as well as environmental factors all influence the ability to provide recovery focused care. Three overarching themes which either facilitated or hindered were identified. These included: (i) Complexity of the nursing role (clinical care; practical and emotional support: advocacy and education; enforcing aspects of the Mental Health Act. and, maintaining ward safety); (ii) Constraining factors (operational barriers; change in patient characteristic; and competing understandings of care); and (iii) Facilitating factors (ward factors; nursing tools; nurse characteristics; approach to people; approach to work and ability to self-care). We suggest that the therapeutic use of self is central to the provision of recovery oriented care. However person-centred practice can be fragile and fluid and a compassionate system of support is needed to enable an understanding of context and self. It is critical to have a work environment which fosters hope and optimism and is supportive of autonomy, ensures workload balance, and is safe.

General practitioner management of chronic diseases in adults with severe mental illness: a community intervention trial.

Objective The aim of the present study was to assess the effects of a community intervention aimed at general practitioners (GPs) by comparing Medicare claims data from patients with severe mental illness (SMI) of GPs exposed to the intervention and controls that were not. Methods A comparison was made of primary care consultation and pathology data of people with SMI from intervention and control areas. Negative binomial regression models were used to compare the frequency and length of GP consultations, as well as the number and type of pathology examinations. Results Records of 103 people from intervention area and 98 controls were obtained. Intervention and control areas were not different at baseline in terms of age and claims data, but females had higher consultation rates. After adjusting for gender, people from intervention areas had more GP consultations, especially long consultations (adjusted incidence rate ratio 1.56; 95% confidence interval 1.28-1.91). They also had more pathology screening for chronic diseases, in accordance with implemented guideline recommendations. These benefits persisted after the end of the intervention. Conclusion These findings suggest that the ACTIVATE program aimed at training GPs to screen and better manage chronic diseases in adults with SMI had a positive effect up to 6 months after the trial, with demonstrated desired changes in medical management practices by GPs in the intervention area during that time. What is known about the topic? People with an SMI have higher mortality and poorer physical health than the general population. What does this paper add? The community intervention had a significant and sustained effect, with demonstrated desired changes in screening and medical management by GPs for adults with SMI in the intervention area. What are the implications for practitioners? GPs are ideally placed to assist in the prevention and better management of health conditions, thereby reducing avoidable illness and deaths in vulnerable populations, such as adults with SMI. Ongoing professional training and dissemination of clinical guidelines are critical for raising awareness about the physical and oral health care needs of people with SMI.

"What is the work of Recovery Oriented Practice? A systematic literature review".

Concepts of personal and social recovery in mental illness are constantly evolving because the journey is fluid and subject to change over time. Dynamic interactions between the complexities of human nature and mental illness create ever-altering landscapes of perplexity. The acknowledged ebb and flow of recovery in the presence of chronic and serious mental illness requires health professionals to provide a flexible suite of care, delivered through skills and methods that are responsive and meaningful to the recipient. We conducted a systematic search for qualitative literature that articulated the work of personally-supportive recovery-oriented practice (ROP) to determine the specific components of recovery-supportive work. Twenty-one articles were identified as meeting the inclusion criteria and were synthesized using a coding framework derived from Normalization Process Theory. We identified three kinds of recovery-supportive work required from health professionals: alleviating stigma, delivering effective recovery-supportive responses in the presence of complex health and social situations and managing challenges associated with the work of ROP. We discuss the resources needed for ROP and the barriers that inhibit health professionals' engagement in this work. By elucidating the work of ROP, we highlighted a disparity between health professionals' aspirations and achievements. These revelations could inform service delivery in order to better support consumer recovery in serious mental illness.

Political Challenges in Complex Place-Based Health Promotion Partnerships: Lessons From an Exploratory Case Study in a Disadvantaged Area of Queensland, Australia.

Settings-based health promotion involving multiple strategies and partners is complex, especially in disadvantaged areas. Partnership development and organizational integration are examined in the literature; however, there is more to learn from the examination of practice stakeholders' experience of intersectoral partnership processes. This case study examines stakeholder experiences of challenges in new partnership work in the context of a culturally diverse and socioeconomically disadvantaged region in Queensland, Australia. Health promotion staff and community representatives participated in interviews and focus groups, and the thematic analysis included observations and documentary analyses. Our findings highlight the retrogressive influence of broader system dynamics, including policy reform and funding changes, upon partnership working. Partnership enablers are disrupted by external political influences and the internal politics (individual and organizational) of health promotion practice. We point to the need for organization level commitment to a consistent agreed vision specifically accounting for place, as a cornerstone of intersectoral health promotion partnership resilience. If organizations from diverse sectors can embed a vision for health that accounts for place, complex health promotion initiatives may be less vulnerable to broader system reforms, and health in all policy approaches more readily sustained.

Understanding the nutrition care needs of patients newly diagnosed with type 2 diabetes: a need for open communication and patient-focussed consultations.

Patients who are newly diagnosed with type 2 diabetes mellitus (T2DM) commonly attempt to modify their dietary intake after receiving nutrition care from primary health professionals. Yet, adherence to dietary recommendations is rarely sustained and factors influencing adherence are poorly understood. This study explored T2DM patients' experiences of dietary change and their views on how primary health professionals can best support long-term maintenance of dietary change. A purposive sample of 10 individuals recently diagnosed with T2DM participated in three individual semi-structured qualitative telephone interviews: at baseline, then at 3 and 6 months after recruitment. Interview questions were modified from the initial interview in order to investigate emerging findings. A two-step data analysis process occurred through content analysis of individual interviews and meta-synthesis of findings over time. Participants initially made wide-ranging attempts to improve dietary behaviours, but most experienced negative emotions from the restraint required to maintain a healthy diet. Participants felt confused by the conflicting advice received from health professionals and other sources such as friends, family, internet and diabetes organisations. Participants frequently reported feeling rushed and not heard in consultations, resulting in limited ongoing engagement with primary healthcare services. These findings suggest that there is opportunity for primary health professionals to enhance the dietary support provided to patients by: acknowledging the challenges of sustained improvements in dietary intake; open communication; and investing in patient relationships through more patient-focussed consultations.

The critical role of community-based micro-grants for disability aids and equipment: results from a needs analysis.

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.