Self-managed aged home care in Australia - Insights from older people, family carers and service providers.

This paper presents findings from the evaluation of an Australian trial of self-managed home aged care. The self-management model was codesigned by advocacy organisation COTA Australia, consumers and service providers. The primary aim of the evaluation was to examine whether self-management improved consumers' perceptions of their choice, control, and wellbeing. The secondary aim was to examine whether provider prior experience with self-managed packages significantly influenced consumers' perceptions of choice, control and wellbeing, thereby confounded trial effects. A pre-test post-test quasi-experimental design and mixed-methods design were used to collect data over nine months in 2018-2019. The pre-trial methods and findings have been published. The post-trial evaluation replicated the pre-trial data collection method of an online survey (n = 60) and semi-structured telephone interviews with consumers (n = 9), family carers (n = 13), and consumers and carers jointly (n = 2), totalling 24 interviews. Semi-structured telephone interviews were also conducted with CEOs and senior managers from each of the seven providers (n = 14). Three providers had prior experience supporting self-management. Parametric and non-parametric tests examined the statistical data. Qualitative data were analysed thematically and framed according to self-determination principles and ecological systems theory. Both datasets demonstrated that consumers reported greater choice and control at post-trial than pre-trial. This finding was not affected by providers' prior experience with self-management; therefore, it was not a confounding factor. Participants reported improved wellbeing in interviews, however this was not reinforced statistically. Key desirable features of self-management included greater autonomy and control over spending, recruiting support staff and paying lower administration fees. There was no evidence of increased risks or fraud. The research limitations included a small sample size, convenience sampling with providers recruiting interview participants, no control group and differences in trial implementation. The findings support the expansion of self-management opportunities and more comprehensive evaluations that use mixed methods.

Consumer expectations of self-managing aged home care packages in Australia.

This study investigated the expectations of older people who chose to participate in a self-management trial of home aged care packages conducted by COTA Australia. Empowerment theory is used to interpret the findings. All Australian home aged care support packages are delivered using a consumer directed care (CDC) model, and most are managed by an aged care provider. The COTA Australia trial gave older people the opportunity to self-manage their package and have more control over spending and less constraints on its use. This study examined three questions: (a) what motivated the older person, or an informal carer acting on their behalf, to participate in the self-managing trial; (b) what outcomes they expected (c) and what was their attitude towards risk. The trial was conducted over 9 months in 2018-2019. Seven registered home aged care providers from six Australian states and territories recruited 103 consumers to the trial, with having an informal carer act on their behalf. Online questionnaires with consumers (n = 103) and informal carers (n = 66), and 18 semi-structured interviews showed that older consumers and their informal carers had high expectations that self-management would result in: increased choice and control and more flexible use of funds; lower administration fees and more money to spend on services and supports; improved relations with service providers and the opportunity to select support staff. Participants wanted clear information and guidelines and support from their provider. While wanting to have more control and be empowered, few respondents noted concerns about possible risks. This finding raises questions about consumers' awareness of risks that are documented in the literature, and it challenges providers to balance risk management with facilitating independence and autonomy.

Support as a complement, intrusion and right--evidence from ageing and disability support service users in Sweden and Australia.

How service users conceptualise their personal support services is under researched, even though this understanding is important for responsive policy development and service implementation. This paper tests the proposition that service users understand formal support in three ways: support is a complement to their other arrangements, an intrusion into their personal life and a right. These three concepts were identified using discourse analysis in a Swedish study of older people wanting in-home support services. To test generalisability of these concepts, they were applied to data from an Australian study of people using disability personal support. The analysis found that the three concepts were core to people's views of their support, although the construction of the concepts differed in the two countries. Service users in Sweden asserted their right to services more forcefully than those in Australia, and they had higher expectations that their support needs would be met. These differences reflect the impact of each country's social policy environment on service users' expectations. The analysis suggests that service users and their families want to control their formal support arrangements to complement their informal care and their life preferences and to minimise the intrusive aspects of formal support. The findings imply that the three concepts have utility for theorising service users' perspectives, informing policy and developing implementation strategies which enhance peoples' quality of life.

Developing consumer-directed care for people with a disability: 10 lessons for user participation in health and community care policy and program development.

This paper outlines 10 lessons derived from the development of a consumer-directed care program for families with disabled children in Melbourne, Australia. The following program elements proved to be of importance over the course of the development process: (1) research participants should be involved as early as possible; (2) an open, inclusive communication style in conjunction with a good understanding of potential concerns and a careful framing of the policy issue is required to build trust and allow meaningful collaboration; (3) various strands of evidence have to be woven together; (4) ongoing commitment and support from management and key stakeholders; (5) effective knowledge transfer and cultural change processes; (6) capacity building; (7) mediation of power differentials; (8) community building; (9) participant re-engagement strategies; and (10) solid project management skills.

Snapshot of flexible funding outcomes in four countries.

This article reviews social participation outcomes identified in discrete studies of flexible funding programmes across four countries. The outcomes of an Australian flexible funding support programme were studied in 2007; a study tour of independent living programmes was conducted in England and Scotland during 2005; Swedish co-operatives and government administrators providing personal assistance to live independently were visited in 2006 and Australian independent living support groups operating for over 20 years were visited in 2008. Fifty-six interviews were conducted with people with a disability, families, support services, government administrators and researchers. A structured interview schedule was used in the 2007 Australian study and a semi-structured format was used in all other studies. Notes from the interviews were reviewed for themes related to social participation and their contributing factors. Ecological systems theory was used to identify what factors from the micro to the macro system level facilitated or hindered social participation. The key finding is that flexible funding did result in a range of social participation activities in each setting studied. The studies also indicate that social participation increases when people have access to information and support services; can choose their individual workers and move to a new agency if need be; and have adequate resources to meet their needs. The cultural and political context plays a large part in determining these factors. The implications of this study are that adequate resources are needed and the complex systems impacting on flexible funding need to be understood to achieve the intended outcomes.

Experiences of disability consumer-directed care users in Australia: results from a longitudinal qualitative study.

The rapidly growing body of literature suggests that Consumer-directed Care (CDC) has the potential to empower consumers and improve the flexibility and quality of care. However, reports highlighting quality and risk concerns associated with CDC focusing on a longer time frame have been few. This paper presents the findings from a qualitative longitudinal evaluation of an Australian CDC programme. Focusing on the period between 2003 and 2008, it reports on the experiences of 12 families caring for a dependent family member. It is based on two external evaluations completed 6 and 36 months after enrollment, and one internal evaluation completed 48 months after enrollment. The findings were triangulated with internal memos, reports and minutes of meetings, as well as with the theoretical literature. The study demonstrates that CDC harbours considerable benefits for people with disabilities and their carers. However, the study also suggests that, over time, carers may experience an increased sense of isolation and lack of support as a result of their involvement in the CDC programme. The paper argues that the development of safeguards addressing these weaknesses is crucial for the sustainability of CDC programmes in contexts where risk cannot be simply transferred onto consumers.