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VOLUME 2017 , ISSUE 3 (September 2017) > List of articles
Citation Information : Evidence Base. VOLUME 2017 , ISSUE 3 , Pages 1-18 , ISSN (Online) 1838-9422, DOI: 10.21307/eb-2017-003, September 2017 © 2017.© Australia and New Zealand School of Government and the authors
License : (CC BY-NC-ND 4.0)
Published Online: 06-October-2017
The introduction of the National Disability Insurance Scheme (NDIS) has the potential to substantially transform care for Australians with disabilities. One of the key components of this system is individual funding – where the person with disability is allocated an amount of resource that they self-direct within a market system. A number of other countries have experimented with individual funding approaches and this review explores this recent experience to identify lessons that will be salient for the Australian context. In doing so, the review analyses evidence relating to the outcomes reported from these systems and sets out lessons concerning their implementation in terms of the further development of the NDIS.
Disability policy has become increasingly internationalized, not least through commitments such as the 2007 UN Convention on the Rights of Persons with Disabilities, which sets out a powerful desire to support people with disability to live active and meaningful lives in the context of their communities. In recent years, we have seen articulations such as this take hold in different nations, broadly tied to a personalization agenda. Australia is currently following this trend and embarking on significant reform of care services through the National Disability Insurance Scheme (NDIS). A key component of this system is self-directed care, based on the idea that giving people with disability control of a budget they can use to purchase services allows individuals to tailor their care to meet specific needs. It is argued these systems of care should empower individuals and their families by expanding choice and control over services. This will help integrate individuals into societal life, restoring people’s rights as citizens (Oliver and Sapey 2006).
In making the case for the NDIS reforms, it was argued that disability services were underfunded, inflexible and built around the needs of the system, rather than of the individual (National People with Disabilities and Carer Council 2009). Traditionally disability services have been the responsibility of state and territory governments, and different models have been developed across the eight jurisdictions (Fisher et al. 2010). Some Australian states had developed individual funding components, but they varied in their particular features (Purcal et al. 2014). The funding and organizing picture for disability services was complex, with splits between state and territory and federal responsibilities. Added to this complexity was the existence of insurance-based funding of disability services, and disability services funded privately as a result of public liability claims. What this meant was that individuals who acquired a disability through no fault of their own (at work or in a road traffic accident) may be entitled to greater levels of service provision through the relevant insurer than someone born with a disability.
In addition to the organizational complexity, people with disability were often reported as being marginalized from mainstream society and having fewer life chances. It has long been recognized that quality of Australian disability services and outcomes for people with disability are poor, particularly when compared to other developed nations. A study from the OECD found Australians ranked lowest in terms of quality of life for people with disability (OECD 2009). Australians with disabilities have low levels of income and labor force participation (Milner et al. 2014), experience social exclusion (Mithen et al. 2015), and significant levels of violence (Kmjacki et al. 2016). Moreover, longitudinal evidence suggests that inequalities persist, and in fact these trends have become worse over time (Kavanagh et al. 2013).
The Productivity Commission (2011, 2) was charged with investigating the organization and funding of disability services and found it ‘underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports’. The report set out a new approach to funding care services through the NDIS. As well as greater investment in early intervention and community-based support for people with low support needs, individualized packages of funding would be available for people with higher support needs. The economic rationale behind this system is that spending resources in more appropriate ways – tied to early intervention and investment approaches – should ultimately save the public purse money, as individuals with disability are better able to engage with the labor market and mainstream society. Unlike some other countries, the NDIS focuses solely on those who enter the scheme before 65 years of age. The federal government committed to providing $22 billion to this scheme, funded in part through an increase in the Medicare levy. While Australian disability services have been predominantly block-funded, the NDIS will bring them closer to much of Western Europe and North America, where variants of individualized funding are available (Purcal et al. 2014, 89).
The NDIS began national rollout in July 2016 and recently recruited its 100,000th participant (Probono 2017). Yet the scheme is still developing as it is rolled out across the country, and there remain questions over how this will work in practice. A much-used metaphor for the NDIS has been a ‘plane being built during flight’ (Whalan et al. 2014, 4). Rolling out initiatives ahead of an evidence base is not confined to Australia, with Needham (2010, 136) noting that ‘personalization is an agenda in which policy roll-out is racing ahead of the evidence base – spreading into new services before earlier pilots are concluded’. Given significant domestic and international experience of these schemes, this review explores the evidence base to glean insight into the degree to which they improve outcomes for individuals and provide lessons about the effective implementation of these schemes.
The review is structured as follows. Having set out a brief account of the policy context, the next section provides an overview of the methods adopted for the review and a summary of the nature of the evidence base. Although there is a current international trend for individualized funding systems in disability services, the evidence base is far from strong. The review then moves on to the findings, providing an overview of the different types of funding systems, their impact, and lessons regarding implementation. There is a lack of high quality evidence and much is still unknown about the efficacy of these mechanisms. There are, however, a number of important lessons about what factors seem to be important when implementing these schemes.
This review set out to explore evidence relevant to the NDIS in terms of the processes and outcomes of individual funding schemes. The author previously conducted a rigorous review of the literature relating to individual funding in 2010 as a component of a project exploring the implications of the personalization agenda for the community sector (Dickinson and Glasby 2010). Since this time there have been a number of additions to the literature. Therefore, this review focuses principally on the evidence generated post-2009, building on the previous project.
The following bibliographic databases were searched: CINAHL (EBSCO), EMBASE, Scopus (Elsevier), Social Services Citation Index (Web of Science), Social Services Abstracts (Proquest) and Google Scholar. The key search terms used were:
‘Personalization’ AND (‘disability’ OR ‘health’ OR ‘social care’ OR ‘social services’)
‘Self directed care’
‘Market management’ AND (‘disability’ OR ‘health’)
The criterion for inclusion in the review was that papers should include original evidence relating to the use of individual funding schemes and their efficacy in the context of disability services. Items that reviewed the existing evidence base without offering new empirical data were not included. Articles that discussed issues relating to the topic of individual funding in a conceptual sense or speculated on the potential impacts of this agenda, but without the presentation of new data, were not included. Items that focused solely on the implications for particular professional groups without considering the efficacy or impact of individual budgets were not included. Articles that focused on aged care were not included, as older people are not eligible for entry directly to the NDIS. Inclusions were limited to English language papers. Papers were not included where they focused on a discussion of other policy areas (e.g. health) with little mention of disability-related issues.
The initial search yielded 1031 items. All papers identified were assessed using a three-step process. First, the title of each article was scanned to develop a list of articles that potentially met the review criteria, and to remove any duplicate items. This yielded 151 articles. Abstracts for these articles were then reviewed and 80 broadly met inclusion criteria. Narrower criteria were then used to ensure that items were only included if they met the inclusion criteria outlined above. In total 25 articles met the inclusion criteria. As these full articles were read, note was taken of any relevant ‘grey literature’, and four more items were identified as a result of this process. Appendix 1 provides an overview of all the items included in the review.
When seeking to extract lessons from different national contexts it is crucial that we take care, given that these settings are informed by the various national, historical, institutional and cultural contexts in which they operate (Williams 2009). In this case we also need to take care because the quality of the evidence base is limited. As described above, a number of papers were excluded from the review as they did not include empirical data and were largely normative discussions concerning the design and delivery of disability services. Even where papers did include empirical data, there are questions as to the methodological robustness of these explorations and the quality of those data. For example, in a systematic review of personal budgets for people with disability, Webber et al. (2014) found that studies often lacked detail about funding mechanisms, and in some cases found it difficult to distinguish between processes and outcomes. Along with a number of ‘methodological shortcomings’, the team found they were limited in the extent to which they could interpret findings. Manthorpe et al. (2015, 44) concur, describing studies found in their scoping review as ‘often small-scale and/or characterized by small sample sizes; they may be reliant on pilot activities, with little or no long-term follow up’. This team concluded that there are some critical gaps in our knowledge, particularly in relation to implications for consumers and carers. Webber et al. (2014) further note there are greater gaps around some service areas than others (e.g. mental health).
A note concerning the quality of this evidence is important because the majority of literature concerning individual funding systems has an intrinsically positive hue. Alakeson (2010, 3), for example, concludes that ‘despite significant differences in programs across countries, evaluations reveal a consistently positive picture’. Yet a more recent review found ‘the quality of the studies…was moderate at best…which is rather worrying given the significant investment in research and evaluation on personal budgets over the last 10 years. Many personal budget evaluations had a high risk of bias …There is a need for large high quality experimental studies in this key policy area to inform…policy and practice’ (Webber et al. 2014, 153). There are few examples of the kinds of studies that Webber and colleagues call for. A notable exception is the evaluation of English individual budget pilots (the so-called IBSEN review), which is responsible for ten of the articles included in this review (see Jones et al. 2014; Mitchell et al. 2015; Forder et al. 2012; Glendinning et al. 2008; Jones et al. 2012; Moran et al. 2011b; Moran et al. 2011a; Netten et al. 2012). The reality is that careful and detailed explorations of the impact of individual funding systems are few.
It may not be entirely surprising that we lack quality data concerning reforms around disability services. Studies find that disability research often lacks visibility, is poorly coordinated, and lacks methodological rigor. A study from the Institute of Medicine Committee on Disability in America (2007, 288) concluded that, despite some progress, disability research is ‘still substantially underfunded’. These findings have been echoed in Australia, where an audit of disability research (Llewellyn 2014, 43) found:
there were no policy studies identified that provide a thorough evaluation of current or past policy. Policy is critiqued theoretically or practically but this falls short of evaluation and does not provide an effective basis from which to reform policy. There is very little research examining the practice implications of policy innovations. This is a significant gap because the effectiveness of the policy will be measured in how effectively practitioners are able to implement it to meet the needs of their clients. Evaluation is often conducted internally to government, but this is rarely shared publicly as governments and services are reluctant to advertise policy problems. This limits policy learning and encourages the repetition of policy mistakes. There is little cost-effectiveness research in any of these studies.
The introduction noted that disability services in Australia have traditionally been described as underfunded. As we will see in the discussion below, this is not unusual in an international context, where many people with disability remain socioeconomically disadvantaged. At a time when there is insufficient funding for disability services, and concerns over levels of government spending more generally (New Zealand Productivity Commission 2015), it is perhaps difficult to make the argument that more should be spent on disability research in order to ensure a sound evidence base. However, in a context where significant funds are being invested in the rollout of the NDIS, it is important to note the limitations of the evidence base. The next section moves on to outline the individual funding initiatives that have been implemented in different jurisdictions, the evidence concerning the impact of these systems, and lessons learned about what is important in driving these systems.
The key difference between traditional approaches to disability services and individual funding schemes is that the former are designed to offer individuals more choice and control over their lives. Beyond this, there is variety in how these systems operate. First, there are different names for schemes, which is to be expected – although there are some important differences in programs that have the same name. Some systems allow funds to be paid directly to the individual and some allow payment to a host provider to administer on behalf of the individual. In the latter case there are many different agencies that might function as a financial intermediary – in some systems this will be a public institution and in others a community organization or other variation. Typically, programs involve some form of needs assessment and the development of outcomes or goals that are to be achieved, but how this operates varies significantly.
Table 1 provides an overview of some of the different programs available and their key features. As this illustrates, models differ in what individuals are allowed to spend money on, who holds resources, and scrutiny over spending of these funds. In managing what individuals can spend on, Alakeson (2010) makes a distinction between two models of individual funding. The first is described as an ‘open’ model where a cash payment is provided to individuals meeting certain eligibility criteria and they can choose how they spend this money with few restrictions. Care is reviewed to assess whether it is ‘adequate’, and if not this can be removed (Gibson and Redfoot 2007). This model has tended to be used in countries such as Germany and Austria. The second model is a more planned approach, where there is a direct link between the needs of the participant and the goods and services purchased to meet them. This has been the type of approach adopted initially in the Netherlands, the US, and England, and the model that underpins Australia’s NDIS. New Zealand also has a planned individualized funding system that enables people with disability to directly manage the support they are allocated from Home and Community Support Services. The individual funding scheme can be used to purchase services provided by support workers and meet costs relating to their employment, but money cannot be used to manage services such as day and/or vocational services, rehabilitation services, supported living or respite services (Ministry of Health 2012).
As Purcal et al. (2014) illustrate, the demand-side of the equation (i.e. who controls the budget) is not the only important consideration and we need to pay equal attention to supply-side issues (i.e. the providers of services). Even if people with disability have control of their funding, if they lack ability to direct the kinds of services they want or need, this can limit choice. In their study of Australian individual funding systems pre-NDIS, Purcal et al. (2014) note that Western Australia has operated individual funding systems since the 1980s, but block-funding is still the dominant way of funding disability providers. Limitations on availability of providers can limit choice about sources of support for individuals. This further demonstrates an important point about the degree to which market forces sit at the heart of these schemes. Norway has operated individual funding since 2000 and has moved to offer more control, but without creating a significant market for disability services. Rather than individuals having direct control over funds, they choose a provider to work with and through this play a greater role in managing their care. A study by Christensen and Pilling (2014) found more than half of individuals chose to work with their municipality, with just over a third opting for a user-led cooperative and the remainder receiving funds personally (11 percent) or through a private organization (two percent). Rather than focusing on enhancing consumer rights through a market, Norway has focused on offering individual choice and control in everyday life through public and user-led support stressing a role in management.
As this section has sought to illustrate, although there is an international trend towards individual funding systems, there are some important differences in how these systems have developed and operate. What this means is we need to be careful when thinking about what lessons we draw. When we add this observation to concerns about the quality of the evidence base, this suggests we should take care in extrapolating findings.
In assessing the efficacy of a policy initiative, any handbooks on evaluation stress the need to go back to the aims and objectives of a program in order to check the degree to which it had the intended impact (Dickinson and O’Flynn 2016). This proves to be a challenge in relation to individual funding initiatives, where there are multiple conflicting philosophies concerning what this agenda should deliver. Indeed, it is a well-rehearsed argument that the popularity of individualized funding is a result of it knitting together two dominant policy trends in advanced democracies: neoliberal public sector reform, which seeks to strip power away from large government bureaucracies, and human rights discourses, which aim to maximize the scope for self-actualization amongst people who have been denied full citizenship in the past (Needham 2011). Although on the surface the philosophies of these two positions may seem similar to the extent that they afford people with disability more choice, Roulstone and Morgan (2009) have argued they are growing increasingly apart.
Tensions between these two strands have surfaced in the UK in debates over the degree to which person-centeredness and individualized funding aim to develop citizen-rights or consumer-rights (Ferguson 2007). Consumer-rights are typically conceived as being concerned with affording people with disability the right to make individual choices within a free market. This is arguably a version of ‘shallow’ personalization as defined by Leadbeater (2004). People with disability are able to purchase services, which allows for modest customization and adaption to their needs, but without transformation of the power balance between individuals with disability, communities, and the state. Citizen-rights – associated with ‘deep’ personalization (Leadbeater 2004) – are also concerned with individual freedom, but in this case in relation to democratic values and inclusion in society. They go beyond customizing services to giving people with disability a greater role and greater responsibilities in designing solutions. Leadbeater (2004) has argued that most public service systems are able to accommodate greater consumer-rights through some minor adjustments to existing systems, but to achieve citizen-rights involves more than just a change to practices of service delivery – it requires a shift in power, so that design and control of services becomes bottom-up rather than top-down.
It is important to recognize the multiple and potentially conflicting driving forces behind this international policy trend; if there are differing perspectives on what success looks likes, this has implications for drawing lessons from the evidence base. In the remainder of this section themes from the evidence base are explored concerning claims that have most frequently been made for individual funding systems, namely whether individual funding mechanisms save money and/or improve consumer satisfaction and outcomes. But it is important to remember that assessments as to relative success of initiatives should relate to their particular aims.
One of the arguments made for pursuing an individual funding approach is that these mechanisms have the potential to save money for the public purse. It is recognized that funds for disability services have not always been spent in the most effective or appropriate ways. There is also a particular feature of the Australasian policy context that is distinct from those found in the remainder of the world. Australia and New Zealand have in recent years expressed a keen interest in ‘social investment’ approaches to welfare (New Zealand Productivity Commission 2015), where interventions are adopted explicitly on the basis that they will reduce future welfare liability. Within this context, social insurance schemes such as the NDIS are seen as a helpful way to ensure long-term wellbeing and reduce expenditure. Such approaches also aim to have net positive benefits on the economy, for example by engaging individuals in the workforce, reducing welfare payments, and generating tax revenue. These initiatives build, in part, on examples such as WorkCover and the Transport Accident Commission in Australia, and the Accident Compensation Corporation in New Zealand (a no-fault personal injury cover for all residents and visitors). In recent years these schemes have moved on from simply funding services to investing in preventative approaches as a way of reducing claims. The language of investment features heavily in the Productivity Commission’s report on the NDIS (2011), and the design of the system encompasses the features that Lister (2003) identified as core to a social investment approach. These include investment in human and social capital; a focus on the future; an attempt to adapt individuals to the knowledge economy in order to enhance global competitiveness; and an integration of economic and social policy.
Locating the NDIS within a social investment approach places it in a different standing vis-à-vis the individual than we find in other welfare systems (e.g. England). Although other systems have focused on upstream interventions to prevent the use of more acute services, this has a different focus within the actuarial approach of the NDIS and New Zealand social service reforms. Demonstrating the value of preventative services is notoriously difficult (Dickinson and O’Flynn 2016). From the existing evidence base it is not easy to tell whether the NDIS will be successful in its investment approach, particularly given it is underpinned by an ethos different from many of the extant individualized systems of funding.
In relation to whether individualized funding saves money, it is also often argued that it is difficult to evaluate cost given that there is not sufficiently detailed data available, or accurately-costed comparison groups (Gadsby 2013). Capturing the full implementation costs of an initiative is also a challenge, particularly in relation to labour and human capital costs. For example, English studies found that while care packages were not more expensive for those with personal budgets, their care management costs were higher (Glendinning et al. 2008; Jones et al. 2012). Counter-intuitively, care managers spent longer on assessments of people with individual budgets (Jones et al. 2012). Costs for individual funding systems are often underestimated and host agencies are required to work unrealistic schedules (Fisher et al. 2010; Laragy and Ottman 2011).
In New Zealand, research into individual funding shows spending in this area has grown from $10 million in 2009–10 to $39 million in 2013–14. But over this period the cost per user declined from $28,035 per annum to $20,212, representing a 28 percent decrease (Field et al. 2015, 13). These changes could be an indication of cost control, but there is the possibility that the mix of people using individual funding is changing so that those with lower allocations are now being included. However, analysis of those with complex needs shows that individual funding users do better at cost containment than comparative groups of non-individual fund users. Further, there seem to be substantially lower residential care costs in the individual fund group than the non-users, suggesting that these mechanisms allow people to avoid transitioning to residential care. However, the evaluation notes that they could not say with certainty that individual fund users and comparison groups share similar features, due to difficulties with the data they drew on.
In its recent review of personalized commissioning in English adult social care, the National Audit Office (2016, 8) was clear that it did not expect individual funding systems to make savings for the public purse: ‘The Department expects the value-for-money of personalized commissioning to come from improved outcomes for users, not necessarily from savings’. However, there has been a seven percent reduction in spending on adult social care between 2010 and 2015, and in some places this has meant local governments have adopted payment rates at their own level, rather than that of the market. The implication of this is that some individuals will struggle to afford services should these trends continue.
Individualized funding systems, we are frequently told, are better for people with disabilities. Yet the evidence base presents something of a mixed picture about satisfaction and outcomes. Again, there is the inevitable health warning about the degree to which evaluating individual funding systems and making statements about satisfaction and outcomes is possible. There are not vast numbers of studies that have been able to investigate outcomes using validated tools and control groups.
The National Audit Office (2016, 12) found ‘no link between the proportion of users with personal budgets and overall levels of user satisfaction’. However, other studies have demonstrated a clear link between satisfaction and the use of individual budgets within the same country (Gadsby 2013; Waters and Hatton 2014). It is possible that the National Audit Office’s observations relate to patterns in aggregated data across entire populations, as opposed to individuals. The third national survey of personal budget holders in England (Waters and Hatton 2014) examined data at the level of the individual and found that more than three quarters of personal budget holders reported their budget having a positive impact on five of the 15 areas they asked about, including dignity, independence, arranging support, paid relationships and quality of life. Two thirds also cited positive impacts in a further six areas relating to mental health, control over life, feeling safe, family relationships, paid relationships, and self-esteem. Slasberg et al. (2015) took issue with the national survey of personal budget holders, arguing that it simply measures the experience of having an individual budget in comparison with no service at all, and therefore is likely to make the findings look more positive than they in fact are.
Improved choice is often argued to be an important result of individualized funding systems, and the evidence suggests that this is likely to be particularly challenging for those in rural and remote areas, where availability of services is restricted (Dew et al. 2013). In their study of individual budget pilots in England, Netten et al. (2012, 1568) found that those in receipt of these mechanisms reported a ‘greater sense of control’, and this was not dependent on the plan being in place or the level of resources allocated to the individual. Ipsos MORI (2011), by contrast, found that the payment mechanism was important in the degree to which individuals had choice over services. They found that managed budget holders were generally unaware that they could choose providers and were often not offered choice of providers. ‘On balance, it appeared that only direct payments offered a genuine choice to budget holders’ (2). Similar observations have been made by Slasberg and Beresford (2015, 479), who argue that direct payments are the only mechanism that have significant impacts on outcomes for consumers: ‘Whilst policy-makers saw it as a triumph for consumerist notions of choice, it is better understood as a triumph for needs-based planning, but carried out in a person-centered way’. This observation again reiterates the idea that it may not be the funding that has the impact, but the care planning process, as we saw in the Norwegian experience.
Laragy and Ottman (2011) remind us that although increased choice might be highly valued by some, not everyone wants to self-manage. In their study they found that self-management might have the capacity to increase isolation over time. Regardless of the ability of individuals to navigate systems, the literature demonstrates that implementing individual funding systems without attending to broader systems of brokerage and support planning is problematic.
Arksey and Baxter (2012) found individualized funding had led to better relationships with service providers, and Graham (2015) noted that relationships with personal assistants (purchased through individual budgets) were valued for their social links as much as the provision of services. Similarly, carers are an important resource in care relationships for many individuals with disabilities. Larkin (2015) found that more than half of those they interviewed believed that having a personal budget had improved the relationship between carers and consumers.
Gadsby et al. (2013) concluded the evidence demonstrating the impact of individual budgets on health and wellbeing is ‘weak’. Other studies have found ‘modest improvements in levels of psychopathology’ (Spaulding-Givens and Lacasse 2015, 78), slightly higher quality of life indictors (although not statistically significant) (Netten et al. 2012), and some improvement in quality of life and satisfaction (Barczyk and Lincove 2010). Waters and Hatton (2014, 6) also found that individuals were more likely to report better outcomes where local government made ‘the process easy, and they feel fully included in budget setting and support planning’. Further, better outcomes were reported where individuals had spent budgets on community or leisure activities and personal assistants, rather than ‘traditional services’. What this evidence suggests is there are links to improved satisfaction but only where there are appropriate management systems in place: improvements are not simply guaranteed according to the use of these mechanisms. Added to this, there are debates concerning the ability of some individuals to benefit from these systems. It has been argued that some individuals may have cognitive limitations that impede their capacity to control individual funding processes (Dowse 2009; Lymbery 2012).
As the description of the efficacy of individualized funding systems demonstrates, there is not an inherent intrinsic value to these mechanisms, and their effect is in part a result of the way they are implemented. If there is one message in this literature it is that how you implement is as important as what you implement. Careful thought needs to be given to both supply (i.e. who controls budget and how and how budgets are allocated) and demand-side factors (i.e. contracting mechanisms, market stewardship). Further, different groups may require different things: some groups may wish to control their own care and others may not. More time is needed to support care planning for individual budgets than traditional services (Jacobs et al. 2011).
Laragy and Ottman (2011) argue that implementation is often a challenge with individual funding systems, and implementation strategies are often not well developed. They outline a series of factors that need to be in place to support individual funding schemes:
Choice over whether to receive traditional services or self-manage;
Support appropriate to cognitive, physical and cultural needs to be an active participant in planning;
Mechanisms to review appropriate to capacity and individual needs;
Culturally appropriate information and support services;
Provision of adequate resources to meet needs and ability to quickly reassess when needed;
Support services to manage administrative responsibilities;
Clear guidelines about what is allowed and what not, allowing for maximum flexibility and creativity;
Support from peers (i.e. other consumers or families);
Support for support workers and to protect working conditions.
In their study of barriers to the use of individual budgets in rural and remote areas, Dew et al. (2013) note similar challenges, including: a lack of information and advice; limited local service options and capacity; higher costs and fewer services; and the complexity of self-managing individual funding packages.
A key message in the implementation of individual funding systems relates to ensuring there is appropriate advocacy and support in place (Jepson et al. 2015). Without this, there is a danger that individual funding is seen as an exercise in cutting costs, with individuals or families performing functions of government. There needs to be clear and ongoing assistance over the life course to support individuals in an ongoing way, as and when issues arise and circumstances change (Arksey and Baxter 2012). Table 2 summarizes the main findings of the review regarding cost savings, impact on outcomes, and implementation factors.
This section considers the implications of this evidence base for the NDIS and Australian disability services. As noted in the methodology, papers relating to aged care were excluded from the review as the NDIS is not available for entry to those aged over 65. However, it is worth noting that the lessons from this literature are quite similar, with the exception that older people are even less favourable of these approaches than younger people with disabilities (Dickinson and Malbon, forthcoming). What this literature does demonstrate is that effective care coordination is crucial and that this is more, rather than less, time-consuming in individualized systems of care.
Despite early enthusiasm for the concept of individual funding systems, there are growing criticisms and uncertainties as to their efficacy. Some criticism may be driven by the public service context in some countries, rather than due to individual budgets specifically. UK public services have in recent years witnessed an austerity agenda, ushering in significant cuts to benefits and eligibility for services, and increased emphasis on individual responsibility and voluntarism for the provision of welfare (Featherstone et al. 2012). Beresford (2012), amongst others, has argued that far from protecting the most vulnerable people in British society, cuts have actually targeted people with disability. Studies from the US and other jurisdictions confirm that many individuals with disability live in poverty, dependent on limited welfare funding and family members (Inoue et al. 2014). Against this background, some waning enthusiasm for individual funding mechanisms could be due to their use in helping to cut overall spending through tightening care funding.
Debates also exist about what the ‘active ingredient’ is within individual funding. This has been a particular feature in UK debates, where there are multiple variants of funding forms. Here discussions center around whether improvements relate to the availability of individual funding, or simply better case management (e.g. Ipsos MORI 2011; Slasberg et al. 2012). Other contributions suggest implementation of the personalization agenda is falling short. Spicker (2013, 1259) observes that
personalization sometimes falls short of the claims made for it. It is not always effective, because matching people to resources is time-consuming, difficult and dependent on so many conditions that mismatches are inevitable. It may be inefficient, because it is difficult to deliver selective services without either misplaced provision or inappropriate denial of services. There is only limited support to be found for the belief that services have become more responsible to individual circumstances, as a consequence of personalization, or that they are better matched to need. The case for personalization has to be argued and proved in the context in which it is applied.
What these lessons suggest for the Australian context is that paying attention to implementation is an absolutely critical factor in making successful change. This fact has been acknowledged in recent months by the Productivity Commission (2017) in a review of the scheme’s costs and other recent evaluations of the NDIS (e.g. Warr et al. 2017), where it has been noted that the speed at which the scheme is being implemented is posing some potential challenges to its success. What is clear from the literature is that appropriate care planning, advocacy and brokerage functions and ongoing support will be needed if those who access individual funding are to achieve their desired outcomes. There are limitations to these functions at present (Warr et al. 2017). Market stewardship is also a critical activity – particularly, but not exclusively, in rural and remote areas. As yet, there is limited evidence in the literature about how this might be achieved. In more recent years, a growing body of contributions has emerged that outlines the potential implications of changes to the supply-side as a result of individual funding systems. For example, Roulstone and Kwang Hwang (2015, 849) examine developments in Sweden, England and Wales and found that their impact has been a loss of collective services and impulses, ‘ideas that were central to the development of the independent living movement and its founding principles.’ If the NDIS is concerned with achieving better integration of those with disabilities into broader society, care must be taken not to erode existing collective drivers and further individualize services. Moreover, the integration agenda also raises important questions about what can be achieved through individualizing care funding, but not other sources of funding. If integration is to be achieved, the NDIS will need to work closely with a range of mainstream services (e.g. health, employment, human services). The past 30 years of collaboration literature suggests this is not an easy task (Dickinson 2014), and in some cases individual funding schemes have reignited age-old boundary debates (Glendinning et al. 2011; Dickinson and Carey 2017).
Finally, it is worth remembering that while international evidence about implementation is important, the NDIS approach is distinct in its approach to welfare (Needham and Dickinson 2017). This approach is based on a principle of social investment with a focus on early intervention as a way of reducing future state liabilities. This kind of scheme has been successful in Australia in relation to road traffic accidents and work-related accidents and a similar ethos can be found in New Zealand’s recent social service reforms (New Zealand Productivity Commission 2015). The distinctive aspects of these reform processes mean that we cannot easily draw on evidence from other countries, and further research will be needed in order to examine the degree to which these schemes meet their aims, and the degree of success in improving disability services in comparison with other systems.
This review has explored the growing evidence base on the topic of individual funding. There is at present somewhat of an international trend for individual funding schemes, and Australia has joined this through the development of the NDIS. Despite a burgeoning literature about individual funding, the quality of the evidence is limited. There are a number of different kinds of schemes that fit in this category, with distinct ways of operating factors such as who holds budgets, what they can be spent on, and provider contracting mechanisms. Added to this we find that some of the approaches taken to evaluating these schemes lack rigor, making it difficult to be certain about their efficacy. In addition to issues over the quality of evidence, we find a more philosophical challenge in the sense that these schemes weave together multiple different competing drivers about whether individual funding is intended to uphold consumer or citizen-rights. The Australasian approach to disability services has developed a rather distinct approach, based on particular notions of social investment. This means that we must be even more careful in drawing on the existing evidence.
What the evidence suggests is that despite initial enthusiasm for these schemes, there is growing skepticism as to their efficacy. Concerns have been expressed about the ability of these schemes to achieve their aims of being more cost effective, improving choice and control for consumers, and improving outcomes for individuals with disability. What is not clear from the literature is whether these are inevitable features of these schemes, or whether these factors relate to the ways in which they have been implemented and the degree to which they have been appropriately supported. The review outlines a number of factors that require particular attention during the implementation process in order to ensure that all parties are appropriately supported. Finally, the review notes the distinctive flavour of social service reforms in Australia and New Zealand, arguing that we will need longitudinal research to examine the degree to which such an approach is effective.
The author would like to acknowledge Laura Thomas for her support in searching the literature and seeking out sources of literature and George Cox for his editing support.