Evaluation of the consumer - directed care initiative - Final Report

A. Consumer-directed approaches - a review of literature

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Introduction

This appendix provides an overview of the key features of existing consumer-directed approaches in the community aged care and other community care sectors. The focus is on the perspectives and experiences of older consumers (care recipients and carers), and on the outcomes and risks of consumer-directed models considered to be comparable to the Australian CDC model and important for the evaluation of the Australian CDC initiative.

Definition and development of consumer-directed care

Definition of consumer-directed care

Consumer-directed care (CDC) is both a philosophy and an orientation to service delivery 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). The main objective of CDC is to offer consumers more choice and control than they would have from traditional and agency directed programs (Tilly and Rees 2007, Howe 2003).

Development of CDC approaches

CDC is usually traced to 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. Doty (2010) traces the origins of CDC even earlier, to 1950s Los Angeles, when a home care program for polio patients confined to iron lungs was devised as a more cost effective alternative to inpatient care (Doty, 2010). This highlights one of the recurrent themes in CDC theory: home-based, consumer-directed approaches to care provision not only empower and satisfy consumers and carers, but are also cost effective for funders. The home-based polio care program eventually grew into the California In-Home Supportive Services (IHSS) program, which today provides self-directed home care services for 30,000 low-income children and adults with a disability as well as older people requiring in-home support. It is the oldest and largest CDC program in the United States (Doty, 2010).

A similar confluence of a consumer self-determination agenda and government recognition of potential cost savings in supporting home based care is also evident in Howe’s identification of the Commonwealth Domiciliary Nursing Care Benefit (predecessor to the current Carer Allowance) as the ‘pioneer of consumer direction in Australia’ (2003).

In Australia, CDC models are widely used in the disability support sector, with the oldest such scheme, in Western Australia, having commenced in 1998 (Fisher et al 2010, Laragy and Naughtin 2009). All states and territories now offer some form of CDC involving individual budgets for adults requiring community care, and are actively working to expand those schemes (Productivity Commission 2011).

Types of CDC models

Ottmann, Allen and Feldman (2009) classify CDC models into two types:

1. ‘Cash-for-care’ models – this involves providing cash or vouchers for consumers to purchase their own care instead of receiving agency-directed in-kind care. Most of the US and European models fall into this category.
2. ‘Self-directed’ models – this is a more holistic model allowing consumers to choose among a continuum of care ranging from traditional case management through to direct payment and cash options.

The Australian CDC initiative falls into the second category, albeit with some limitations in terms of the continuum of care options because there is no direct payment component.
In most international and Australian jurisdictions, CDC is an optional alternative to agency- directed care (as it is with the Australian CDC model). In jurisdictions where there is a choice of care model, agency-directed services remain the dominant and preferred model (Tilley 2000). Older people in particular appear to prefer agency-directed services (ibid).

However, it should be noted that the Australian CDC model is the first such model specifically designed for older people (other models were designed for younger people with disabilities, and later expanded to include older people). The Australian CDC model also does not include a direct payment option, and international literature suggests that the perceived burden and stress of directly managing a budget was one of the aspects that many older people disliked in CDC and accounted for their preference for agency-direction. Accordingly, whilst the bulk of evidence suggests that older people prefer agency-direction to self-direction, this may not be the case in the Australian context.

The Australian CDC initiative is unique in that it has been designed specifically for older people. The evaluation will therefore provide an important contribution to the evidence base on consumer-direction for older people. Top of page

Key features of consumer-directed care models

The literature indicates that CDC programs typically include person centred approaches to needs assessment and planning resulting in an individual care plan, may have some form of individual budget option (possibly including an indicative upfront allocation to purchase services agreed under the plan), and 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.

Whilst there are common features, the presence or prominence of these features varies significantly across models, and thus the degree to which consumers have choice and control over their supports, and the degree to which they are involved in support planning, design and delivery, also varies.

This has implications for the evaluation. In particular, the evaluation needs to consider the impacts of particular design features of the CDC initiative in terms of the degree of consumer involvement, choice and control that care recipients and carers have (relative to standard packaged care), as well as the impact of this level of consumer involvement, choice and control on outcomes achieved by participants.

Common features of consumer-directed care models are discussed below, with comparisons to the Australian CDC initiative for community aged care.

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, for example:

• In Victoria, self-directed planning is defined as one of the three main components to its self-directed support model. It considers individual lifestyle choices, aspirations and goals as well as their skills, capabilities and life-stage (DHS, 2008). An individual plan is used as the basis for determining how self-directed funding is spent.
• In the UK, adult social care services have been transformed over the past decade with the introduction of a personalised care agenda. A person-centred assessment and planning process is used to develop a personalised plan. More recently, there has been a move to greater self-assessment and planning by consumers, and refocussing service system resources on case management and support delivery (Department of Health 2009).

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. For example:

• In the Western Australian disability sector, all funding is now individualised (with the exception of some respite and therapy services which continue to be ‘block-funded’) (FaHCSIA, 2010). However, for some service types such as accommodation, consumers have a ‘notional allocation’ of funding which is allocated directly to the provider, but which is portable if they chose to access services from another provider. Consumer choice and control is relatively limited. On the other hand, under the Local Area Coordination program consumers can receive direct payments and have significantly more control over how they use these funds (and are supported to do this).
• In the UK social care system, provision of individual budgets for eligible consumers (including older people) who wish to use them is a fundamental component of the personalisation policy (Department of Health 2009). Consumers who elect to have a ‘personal budget’ can elect to receive a direct payment of funds which they can manage themselves (and purchase their own care and supports), have their personal budget held and managed for them by a third party, or their personal budget is co-managed.
• Direct payments to consumers for attendant care (personal care) services have been in place in Canada (Ontario, British Columbia, and Nova Scotia) for over a decade.

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. In some European jurisdictions, such as the Netherlands, there are requirements for independent audits of expenditure to ensure direct payments are used to support care, whilst in other jurisdictions (Germany and Austria) there are few restrictions on how direct payments may be used and few if any audit requirements. In fact, in those jurisdictions, funds are often pooled with other household income by the care recipient and their family and is often not actually used to purchase care.

Whilst the Australian CDC initiative does not include direct payments, one of its features is co-managed funding allocations held by CDC providers and accountable to consumers. This co-management of funding is a key distinguishing feature of CDC compared with standard packaged care. The extent to which these allocations are in fact co-managed will be an important part of the evaluation, given this feature of the model will have implications for the degree of consumer choice and control over the care that they receive.

The literature suggests that older people are less willing to directly manage their budgets than younger people with a disability. It is notable that, in contrast to much of the international concern with individual budgets, the Australian discourse on CDC to date has focused on participative care planning, access to choice of services and providers, and increased consumer control over delivery to a far greater degree than on individual budgets and direct payments (AACS 2010, Rees 2010, Tilly and Rees 2007, Howe 2003).Top of page

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. As indicated above, 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 Australian CDC initiative falls into this second category.

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. At the most basic level consumers and carers need reliable and accurate information about the range of supports that are available to them and scope to influence and design the supports they receive, the range of providers of these supports and services, and the quality and suitability of these supports and services. Consumers may also need support and assistance to make choices – for example, through a facilitator, support planner, or care manager (Chenoweth 2009).

Examining the effectiveness of the Australian CDC initiative in facilitating informed decision-making will be an important focus for the evaluation, as will examination of any limitations placed on consumers in terms of the choices they can make, and the extent to which that choice is exercised, and the impact of those limitations on consumers’ satisfaction with the level of choice and control they have over their care. In looking at both of these aspects, it will be important to examine the range of information and support that CDC participants have available to them to make choices.

Summary comparison of CDC models: Key features and outcomes

Table A1 below provides a comparative overview of the key features of several international CDC models that are available to older people. Table A2 provides a summary overview of outcomes associated with various Australian and international CDC models.¹

Table A1: Comparison of various CDC models – key feature and options

Jurisdiction	Program name	Program type	Budget options	Planning options	Delivery options
Australia	Consumer-directed care	Consumer-directed	Agency-managed funds	Consumer-directed, agency-managed care planning	Consumer-directed pre-approved agency services
Austria	Long-term care insurance	Consumer-managed (‘cash for care’)	Direct payment	Consumer-managed care planning.	Funds can be used at consumer’s discretion
Canada (British Columbia)	Choice in Supports for Independent Living (CSIL)	Consumer-managed (‘cash for care’)	Direct payment	Consumer-managed care planning (with agency/ broker).	Employment of carers (including relatives)
France	Long-term care insurance	Consumer- directed	Direct payment Co-managed funds	Consumer-managed care planning.	Employment of carers (including relatives) and equipment purchase
Germany	Care allowance	Consumer-directed	Direct payment Co-managed funds Agency-managed funds	Direct payment option: Consumer-managed care planning. Co-managed or agency managed option: Consumer-directed, agency-managed care planning	Direct payment option: funds can be at consumer’s discretion Co-managed or agency-managed option: consumer-directed pre-approved agency services
Netherlands	Personal budget	Consumer-managed (‘cash for care’)	Direct payment	Consumer-managed care planning.	Employment of carers (including relatives) and equipment purchase
Sweden	Self-managed care	Consumer-managed (‘cash for care’)	Direct payment	Consumer-managed care planning.	Employment of carers or purchase of agency services
United Kingdom (England)	Personal budget	Consumer-directed	Direct payment Co-managed funds Agency-managed funds	Self-assessment and planning (with broker/ facilitator)	Purchase of agency services or employment of carers
United States (various states)	Participant-directed care (cash and counselling)	Consumer-managed (‘cash for care’)	Direct payment	Consumer-managed care planning (with agency/ broker).	Purchase of agency services or employment of carers (including relatives)
United States (California)	In-Home Supportive Services (IHSS)	Consumer-managed (‘cash for care’)	Direct payment	Consumer-managed care planning (with agency/ broker).	Purchase of agency services or employment of carers (including relatives)
United states (Washington State)	Home and Community-Based Services	Consumer-managed (‘cash for care’)	Direct Payment Co-managed funds	Consumer-managed care planning (with agency/ broker).	Purchase of agency services or employment of carers (including relatives)
United States (Wisconsin)	Family Care Program	Consumer-directed	Agency-managed	Consumer-directed, agency-managed care planning	Consumer-directed pre-approved agency services

Source: Information in this table has been primarily drawn from the following sources: Glendinning 2008, Hardy 2008, Kodner 2003, Lundsgaard 2005, Productivity Commission 2011, Tilly, Wiener and Evans Cuellar 2000. The literature indicates that CDC programs based on direct payment models are also operating in Israel, Japan, Korea, Luxembourg and Norway, but insufficient descriptive information was identified to include them in this summary.

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Table A2: Comparison of various CDC models – evaluated outcomes

Jurisdiction	Evaluation details	Consumer outcomes	Carer outcomes	Cost effectiveness	Areas to improve
Australia (Victoria)	Direct payments trial (2007)	High satisfaction	-	-	-
	UCCO CDC trial (2009)	High satisfaction	Variable satisfaction (felt isolated over time)	-	Social inclusion of carers
Australia (WA)	LAC review (2003)	High satisfaction (but lower for CALD/ ATSI)	-	Cost effective compared to agency direction	Tailoring for CALD and Indigenous clients
Austria	LTC review (1998)	-	-	-	-
Canada	CSIL review (2008)	High satisfaction	High satisfaction	-	-
France	-	-	-	Cost effective compared to agency direction
Germany	(2008)	Higher satisfaction than for agency directed consumers Increased paid care hours	-	-	-
Netherlands	(1996, 1998)	Higher satisfaction than for agency directed consumers Quality of care equal to agency directed care	-	-	Use of fiscal agents to prevent abuse (not relevant to Australian CDC model)
United Kingdom (England)	Individual budgets pilot (2007)	Satisfaction higher than for agency directed consumers Lower psychological wellbeing for older consumers	Positive impact on quality of life and social outcomes Satisfaction with care planning a predictor of outcomes	-	Safeguarding and quality control of paid carers (not relevant to Australian CDC model)
United States	Cash and counselling demonstrations (2007)	Higher satisfaction than for agency directed consumers Reduced unmet demand Reduced nursing home use Quality of care equal to agency directed care	Higher satisfaction than agency-directed carers	-	Use of fiscal agents to prevent abuse (not relevant to Australian CDC model)

Information in this table has been primarily drawn from the following sources: Arntz 2008, Dale and Brown 2006, Foster, Disability Services Commission 2003, Glendinning 2008, LDC 2007, Ottmann, Laragcy and Haddon 2009, Phillips 2003 and Tilly and Bectal 1999

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Outcomes and risks 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.

Importantly, the extent to which these benefits are experienced by older people participating in CDC is highly variable (Laragy and Naughtin 2009, Ottmann 2009, Glendinning 2008, Lundsgaard 2005, Phillips 2003, Tilly 2000).

Outcomes for older people

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 exception ², the positive impacts are lower for older people than for younger people using CDC programs. In some cases, older people experienced worse outcomes and greater anxiety directly 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).

Where older people do choose to participate in CDC, they may prefer a ‘mix and match’ of agency-directed services with a small direct payment component for additional services (Nicholls 2007). The direct payment option is not a feature of the Australian CDC model, which instead features an individual budget coordinated through an agency. In the UK, many older people prefer this type of arrangement even where a full or partial direct payment option is available. Older people may choose to receive an individual budget with agency-direction because there is little scope to change the essential tasks they require assistance with anyway (and/or because they do not want the perceived burden of self-management), but they do appreciate the opportunity to change other elements, such as service times, to suit themselves (ibid).

In terms of implications of this for the Australian CDC evaluation, it is clear that more information is needed on the outcomes of CDC for older people and so the evaluation will contribute to this evidence base. It will be important to explore with participants their reasons for choosing to participate in CDC in the first place, the extent to which their expectations of CDC have been met, and any differences in outcomes between older people utilising CDC and the comparison group of older people accessing standard packaged care (recognising the length of time that the initiative has been in operation, and the particular design features of CDC which may impact on the achievement of outcomes).

Carer outcomes

Although there is little literature on the impact of CDC on carers (as opposed to care recipients), there is some evidence of potential positive impacts. CDC approaches can provide more opportunities for carer involvement in the planning and delivery of services, and can result in 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).

However, CDC may also have the potential for negative effects on carers if they feel less supported than they would in agency-directed services. There is some Australian evidence that participation in CDC may increase carers’ feelings of isolation and lack of support over time (Ottmann, Laragy and Haddon 2009).

Carer experiences and outcomes will be a key consideration of the Australian CDC evaluation.

Cost effectiveness

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). The potential cost savings are one of the main factors indicated by governments for expanding CDC (ibid).

European and US 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).

Risks associated with CDC

The literature cites a number of risks and issues associated with CDC approaches. Some of these are particularly relevant to the Australian context, but many of the commonly-cited risks are not relevant to the Australian CDC model. For example, potential risks related to potential financial abuse of care recipients by carers and other family members, risks related to misuse of care funds, and risks related to compromised quality of care have been mitigated in the Australian model which does not provide for any direct payments, required budgets to be managed by an already approved provider, and only allows expenditure on service types already approved under existing packaged care programs.

The risks that may be relevant to the Australian CDC model and which will be considered in the evaluation are as follows:

• Ability to effect cultural change: Service sector cultural change and workforce training to support successful CDC implementation is one of the most consistently cited risks in the literature. Workforce considerations and cultural change (and in particular how different CDC is from standard packaged care) will be considered in the evaluation – particularly through the provider interviews, as well as the consumer and carer consultations.
• Consumer capacity: The capacity for frail older consumers and/or consumers with cognitive impairments is a common concern of CDC programs. All existing CDC programs allow for involvement of carers or other representatives for those consumers that may want or require additional help. The Netherlands requires a surrogate decision-maker for all consumers with cognitive impairments. Most CDC programs involve a facilitator/care broker to assist consumers – indeed, this has been identified as a critical success factor for CDC programs (Chenoweth 2009). This can alleviate risks relating to consumer capacity.
• Accountability and transparency of individual budgets (to consumers and to funders/ government): This is another issue frequently cited as a risk for CDC programs. It will be important in the evaluation to explore the extent to which consumers genuinely ‘co-manage’ their allocation and the extent to which they are aware of how it is being spent (transparency for consumers), as well as any unforeseen consequences of accountability requirements dictated by government (for example, whether they restricted choice for consumers or the way providers implemented CDC).Top of page

Implications and considerations for the evaluation

The literature review identified the following key points of relevance to the evaluation of the consumer-directed care initiative:

• Overall, consumers participating in international CDC programs tend to show greater levels of satisfaction with quality of care, fewer unmet needs, and better health and wellbeing outcomes than consumers in agency-directed programs. A key aspect of the evaluation will be testing this in the Australian context by comparing the satisfaction and quality of life outcomes for consumers in the CDC group to those in the standard packaged care group.
• Outcomes for older people participating in international CDC programs appear to be not as good as those for younger people with disability participating in the same programs. It is notable that none of these programs were specifically designed for older people. More evidence on the impact and outcomes of CDC for older people is required. The evaluation will contribute to this evidence base by looking at the impact and outcomes of older people participating in a CDC program that has been specifically designed for their cohort group.
• Given the unclear findings in the literature concerning the extent to which older people want to be involved in managing their budgets as part of a CDC program, another key area for exploration in evaluation will be whether participating consumers wanted more or less control of their allocations than was offered. This will assist in considerations for the future directions of the CDC initiative after the pilot period.
• The UK evaluations suggest that carer satisfaction with CDC is linked to satisfaction with initial care planning, and their level of involvement in those processes. Accordingly, overall carer satisfaction and the extent to which carers were satisfied with CDC planning and their involvement in CDC planning will be another key area of interest for the evaluation.
• There is some Australian evidence that, over time, carers participating in CDC may feel isolated or unsupported in comparison to those participating in agency-directed services. Whilst the evaluation period does not allow longitudinal measurement of carer experience and perception over time, this does again highlight carer satisfaction and experience as a key area of interest to the evaluation.
• A number of critical success factors for CDC relate to providers and their willingness to ‘allow’ consumers a more active role. These encompass providers’ techniques for recruiting participants, the adequacy of the information they provide to consumers and carers, the level of support they provide to consumers and carers, the extent to which they build capacity in participants to engage in CDC, the extent to which they build capacity in their staff to engage in and support CDC, and their overall acceptance of CDC. These factors have been shown to influence CDC program success and outcomes in the US and UK evaluations, and will be relevant areas for consideration in the Australian CDC initiative.
• There is some evidence suggesting that CDC can reduce system costs by reducing case management and agency overheads. However, there is a ‘back room’ cost to administering and monitoring individual budgets which is not always evident in the literature. Assessment of any additional costs of CDC relative to standard packaged care will be a focus of the cost analysis component of the evaluation.

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1. It should be noted that the Australian models relate only to people with a disability, whereas the international models encompass both older people and people with a disability.
2. In one US studies of 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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