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

Abstract

Abstract. 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 reengagement strategies; and (10) solid project management skills.What is known about the topic? User involvement in planning and decision making has become the policy of choice for government as well as health and social care service providers in most democratic countries. However, there are few examples highlighting key factors for successful user involvement. What does this paper add? Based on a longitudinal review of a program developed with significant user involvement, this paper outlines 10 key requirements underpinning participatory strategies for project and policy design. What are the implications for practitioners? Participatory methodologies are potentially complex, have to be meticulously planned and resourced, and have to be carefully managed. To meaningfully involve users in more intricate projects may require the input of experienced professionals. ObjectivesUser involvement in planning and policy decision making has become the policy of choice for government as well as health and social care service providers in most democratic countries. [1][2][3][4][5][6][7] This makes a lot of sense. Indeed, a growing body of research evidence suggests that actively engaging users in the program and policy design process leads to better policy outcomes. 5 Yet this transition to a more participatory and collaborative mode of program and policy design has been uneven. In many health and social care programs, public participation is often restricted to the operational level where users can only influence the service mix they receive and user input into program design and policy making is often minimal. 4,[7][8][9][10][11][12] This is understandable. The transition to a more participatory mode of program and policy development requires a fundamental shift in professional practice and takes time and sustained effort. Moreover, little guidance is available for those who aspire to a more active involvement of user groups in decision-making processes. The lessons outlined in this paper were designed to provide health and social care professionals with a practical guide for an active and ongoing inclusion of user groups. Setting, participants and methodologyWe derived the following 10 lesso...

An early investigation of individual budget expenditures in the era of consumer‐directed care

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“…The desire to age in place is a result of a deeper need by older people to maintain their independence and autonomy with regard to their day‐to‐day lives . The underlying philosophy of consumer‐directed care (CDC) in the provision of community aged care services (CACS) is closely aligned with this objective, and has been widely recognized by policy makers in Australia and internationally in recent years, leading to a move away from traditional provider‐directed care modes of service delivery (PDC) towards CDC …”

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Coproduction in Practice: Participatory Action Research to Develop a Model of Community Aged Care

“…Some voices within the 'coproduction' process held distinctly more power and were more able to influence outcomes. As a result, some voices within the collaborative process needed to be strengthened (Ottmann and Laragy 2010). Consumers' voices were weaker and were easily overcome by administrative and operational 'imperatives'.…”