Evaluation of the consumer - directed care initiative - Final Report

2.4 Consumer-directed approaches in other jurisdictions and settings - a review of literature

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Definition and development of CDC approaches

Consumer-directed care is both a philosophy and an orientation to a service delivery format where consumers, including care recipients and their carers, can choose and control the services they get, to the extent that they are capable and wish to do so (AACS 2010, Rees 2010). Typically the main objective of CDC is to offer consumers more choice and control than they would have from agency directed programs (Tilly and Rees 2007, Howe 2003).

The development of consumer-directed (or self-directed) approaches is commonly associated with the disability rights and self-determination movements in North America and the UK in the 1970s, which resulted in the establishment of independent living grant programs in the 1980s. Today, CDC models are widely used in the Australian disability support sector, and all states and territories now offer some form of consumer or self directed approach to planning, funding and involving person-centred planning, individual budgets for adults requiring community-based care, and are actively working to expand those schemes (Productivity Commission 2011).

In most international and Australian jurisdictions, CDC is an optional alternative to agency-directed care. Many older people appear to prefer agency-directed services (Tilley 2000). However, it should be noted that the Australian CDC initiative is the first CDC model internationally that has been specifically designed for older people (others were designed for younger people with disabilities, and expanded to include older people).

Features of consumer-directed care models

CDC programs typically include person-centred approaches to needs assessment and planning resulting in an individual care plan, and would usually have some form of individual budget option (possibly including an indicative upfront allocation to purchase services agreed under the plan). CDC programs will always feature some degree of consumer choice and control over the types of supports they can access and the providers that deliver those services.

Common features of consumer-directed care models are discussed below.

Consumers are actively involved in the planning of their supports

Consumer-directed care necessarily involves more active involvement of the consumer in the planning and design of the supports they receive, and the development of a person-centred or individual plan which considers their needs and goals as an individual, as well as their family/carer and life circumstances. This person-centred approach to planning is a key feature of successful consumer-directed models.

Consumers are provided with personal budgets or individual funding allocations

Along with personalised planning, one of the key features of a consumer-directed care approach is individualised funding allocations or personal budgets over which consumers have some form of control. The degree to which consumers have control over their allocation or budget, and the limitations placed on how funds can be used, varies significantly across models.

Most models have an option of direct payment to consumers in the form of cash or vouchers, or co-managed budgets where the consumer and a third party jointly manage a personal budget. Where funds are co-managed, a third party holds the funds but the consumer has significant control over expenditure. In some jurisdictions (such as the UK), personal budgets can be made up of both direct payments and co-managed funds.

Consumers have choices over the supports they receive and the design of these supports

Consumer choice can relate to two things: choice of services and choice of provider of services, and typically consumer-directed care models allow both. However, consumer-directed care models differ in the degree of choice that consumers have, and in particular the limits placed on consumer choice:

• At one end of the continuum of choice, consumers can receive direct payments and be relatively unrestricted in terms of the supports that they can purchase and the providers of these supports. In a number of European models consumers can receive cash payments to directly employ support workers, and in some cases employ family members, rather than use their allocation for specific service types from pre-approved providers.
• At the other end, consumers can only choose from a limited menu of services (which may be based on pre-defined ‘service types’) from pre-approved or accredited providers. This is evident in early consumer-directed models applied to specific disability service programs in Australia (for example, the Community Participation and Transition to Work programs for people with a disability leaving school in NSW).

The literature shows that, regardless of the extent of choice permitted within the model, a critical enabler for any effective consumer-directed care program is support for informed decision-making by consumers and carers (Chenoweth 2009). Top of page

Outcomes of CDC

The literature suggests many broad benefits for consumers and carers participating in CDC models: increased hours of paid care, increased consumer and carer satisfaction, improved health and wellbeing outcomes, reduced unmet needs, and potential for cost savings in comparison to agency-directed approaches.

Studies of CDC models in Europe and North America consistently suggest overall positive impacts of CDC on the level of consumer satisfaction with the care they receive, level of consumer independence, wellbeing and quality of life, and perceived quality of care (Glendinning 2008, Wiener 2007, Tilly and Bectal 1999, Benjamin et al 1998), increased hours of paid care (Glendinning 2008, Foster 2005), fewer unmet needs and adverse health events, reduced nursing home admissions (Carlson 2007), and less reliance on case management (Laragy and Naughtin 2009). Consumers who participate in CDC are generally at least as satisfied or more satisfied with their care outcomes (Ottmann, Allen and Feldman 2009).

However, almost without exception², the positive impacts were lower for older people than for younger people. In some cases, older people experienced worse outcomes and greater anxiety related to managing an individual budget (Glendinning 2008). Australian consumer research has shown that many older people see CDC as burdensome rather than empowering (Carers Victoria 2010).

Although there is little literature on the impact of CDC on carers (as opposed to care recipients), there is some suggestion of positive impacts. CDC approaches can provide more opportunities for carer involvement in planning and delivery of services, and greater consideration of the carer’s own needs (Arksey 2009). The UK randomised control trial found that carers’ satisfaction with and level of involvement in the initial assessment and care planning process was a predictor of their overall satisfaction with CDC (ibid).

CDC is cited as a potentially more cost effective, financially sustainable model of care which can better respond to the pressures of an ageing population by supporting ageing in place and reducing inpatient and residential care, as well as meeting increasing consumer demand for more flexibility and control (Laragy and Naughtin 2009, Lundsgaard 2005).

European and American studies of CDC models have found CDC models to be more cost effective than agency-directed models where the CDC model is based on a direct payment system. This is because of the reduced labour costs associated with direct employment of support workers, particularly relatives, and reduced agency case management costs.

It is not clear whether individual budget models of CDC that involve shared or co-managed budgets – either alongside direct payments (such as the Victorian and UK models) or instead of direct payments (such as the Australian CDC model) are any more or less cost effective than traditional agency-directed models (Arntz 2008).

Further detail on consumer-directed approaches in other jurisdictions is contained in Appendix A.

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2. In one US study of a direct payment style CDC model, older people were more satisfied than younger CDC participants (Wiener, Anderson and Khatutsky 2007), but the bulk of the literature – and in particular the findings from randomised control group evaluations of CDC models – find the opposite: that older people are less satisfied.

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the findings from randomised control group evaluations of CDC models – find the opposite: that older people are less satisfied.

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