As noted, the NDIS is part of a shift in the way governments fund services to their citizens, which has been building for 30 years [37, 38, 65]. The push behind this trend has been to give citizens more choice and control of the services that they can access. This is in part a reaction to the perception that ‘universal’ funding approaches do not sufficiently acknowledge or address diversity [65]. Traditionally, governments have provided services directly to citizens – offering a universal or ‘one size fits all’ approach, as demonstrated by the previous disability care arrangements in Australia. However, although universal supports are an important precursor for equity they cannot, in and of themselves, achieve it because of their inability to account for differences in need [41, 54]. Determining how to account for diversity has become a major challenge for policy [20, 21, 41, 54]:
“diversity conflicts with both universal inclusion and universal allocation. This goes beyond gender and ethnicity. Each individual is increasingly seen as differing from other fellow citizens. It has been argued that universalism has become problematic and lost its appeal to many citizens. The growth of middle-class influence and increased cultural diversity… has strengthened social policy discourses based on ideals such as diversity, participant and freedom of choice” [41].
In response, governments have shifted towards what is known as block funding – where organisations outside of government are given resources to deliver a particular program. This approach is argued to provide citizens with a greater range of choices [36], however the effectiveness of this is contested [66]. The next phase of reforms has gone further, focused on ‘personalisation’, otherwise known as ‘individualisation’ of funding. Proponents argue that this is the best way to deal with the diversity of needs which exist within the population – allowing individuals to tailor their supports to their circumstances [67].
Under the NDIS, moving to a system of personalised planning and allocation of funding packages for disability supports, it is argued, will radically change the structure of care provision, emphasising individual choice for purchasing supports in a way that ‘block contracting’ arrangements have traditionally struggled to achieve [34, 52, 60]. In the UK, these approaches have been said to have “the potential to improve the social status of disabled people by transforming their identity from that of passive service recipient to active employer” or (as is more common in Australia with people choosing not to self-manage their funds) an active purchaser through the setting of personal goals [42]. From a government perspective, this change in relationships in the context of a disability service market is seen as a way to deliver more efficient, responsible and innovative services than is achievable with large public bureaucracies [65, 68]. However, as Needham [69] suggests “personalisation is an agenda in which policy roll-out is racing ahead of the evidence base—spreading into new services before earlier pilots are concluded”. From a social determinants of health perspective, more thought needs to be given to the ways in which personalisation under schemes like the NDIS could entrench or extend social and health inequities. This means examining existing inequities that could be compounded by introduction of the NDIS both within and between groups (i.e. on the basis of disability type, gender, culture, age or locality). Some of these challenges were clear at the design stage of the NDIS and noted in early documents as an issue that needed to be accounted for and redressed in implementation. For example, geographical locality was raised by the Productivity Commission, in the first design documents for the scheme, as a barrier to choice and control for some individuals [see, for example, 34]. Other potential inequities have emerged as implementation progresses, such as age and disability type.
Differences between disability type
While the principles of empowerment, choice and control are important to health [3], we need to recognise differences in people’s abilities to exercise this choice and control. While the evidence regarding personalisation is in its infancy [40], currently it indicates that in some contexts personalisation can lead to greater satisfaction and continuity of care and a more effective use of public resources [70, 71] – thereby redressing inequities between people with and without a disability. However, in the UK take up of opt-in personalisation schemes for managing individual budgets and care has been relatively low [40]. Williams and Dickinson (2015) argue that this cannot be put down to a lack of interest, but rather reflects the capacity of individuals to engage in personalised care and of professionals and social networks or carers to support people to engage. Williams and Dickinson (2015, p.5) note that “personalisation policies and approaches have not been welcomed by all social workers who play an important role in the brokerage of these types of arrangements”. Critically, Williams and Dickinson (2015, p.5) have found differential take up and outcomes between amongst those accessing such supports.
To date, evidence from the UK has shown that individuals with physical disabilities are able to take better advantage of these opportunities than those with intellectual impairments. In the latter, good outcomes appear to depend upon strong advocacy or brokerage support – highlighting the critical need to gain support from professionals working within the scheme [33, 40, 42]. In the UK, Riddell et al. [42] found that the top users of individualized funding and management are people with physical and sensory impairments, with people with mental health problems and neurological impairments the least likely to opt in. This is consistent with the literature on health service usage, whereby those who are more disadvantaged are less likely to access services or support and receive less benefit when they do [72, 73]. Similar findings exist with regard to the Australian accident and injury compensation schemes (upon which the NDIS is based); higher take up is found amongst those with physical disabilities rather than neurological impairments such as acquired brain injury [74]. This suggests that personalization and individual budgets can widen inequities between people with different types of disabilities.
A critical difference between the UK and Australian context is that in Australia personalization for those deemed eligible is not a choice – all eligible individuals will be participants in the NDIS. Around 70% of eligible participants have an intellectual disability or autism and related disorder [60]. This enforced participation has the potential to be favourable in terms of equity, as the extra effort required to opt into a scheme is lessened. Yet participation of individuals with different types of disability does not guarantee equitable outcomes; the benefits of personalised funding are also dependent upon other social determinants, such as the presence of social support, education level and income [39].
The extent to which the benefits of personalized funding are realized depends upon the advocacy and support networks individuals have access to [33, 40]. Under the NDIS, individuals must have the ability to negotiate and define goals and plans, and where this is not possible an advocate negotiates on their behalf. For some individuals, Williamson and Dickinson (2015) have found that they neither want nor expect to have to direct their own care. This makes intuitive sense, as being able to maximize the gains of personalized care budgets requires skills in managing them as well as navigating new systems. Willingness and ability to self-manage and control care is likely to be a major challenge for young people as a result of the administrative burden with disability who make up a large proportion of participants [75].
The UK evidence demonstrates that individuals with significant supports in place prior to personalization (i.e. financial and interpersonal) are more likely to experience benefits than those who do not [33]. This suggests that those who are already marginalized or of low-socio-economic status may benefit least from the NDIS (though they still may benefit more than under the previous system because of the overall investment in disability awareness, though this is yet to be seen or tested). This is consistent with the inverse care and prevention law [76], a problem which has plagued population health interventions [1, 77]. Here, individuals who need to gain the most from health interventions actually gain the least. The inverse care and prevention law has been evident across diverse areas of health promotion activity [78, 79], the most famous case being smoking cessation campaigns which have been found to have greater take up amongst high socio-economic groups [72]. Link and Phelan note, ‘resources’ (whether financial or social) are fundamental causes of health and thereby link to multiple disease outcomes through different pathways. These same resources determine the ability of individuals to exercise choice, control and navigate service systems – also linking them to poor service use and/or satisfaction. The inverse care and prevention law can be seen in Needham’s [33] work in disability, which has shown that there is little supporting evidence that personalization efforts have a positive effect on social inclusion or income. She argues that “evidence highlights the dangers of inequity between those with financial and social resources to supplement their use of budgets and those without” [33, 42]. That is, those who have more resources are more likely to reap the benefits of personalization than those without (consistent to the inverse care and prevention law). Considering the significance of the NDIS as a major health and welfare reform, careful attention needs to be given to whether the NDIS plays out according to the inverse care and prevention law and exacerbates inequities and, if so, how to mitigate this.
Currently, the implications of personalized funding and individualized budgets for equity under the NDIS are unclear, based on the differential ability of individuals to engage in exercising the choice and control supposedly afforded to them by such an approach [33, 40, 80]. This may be on the basis of education, lack of supported learning, or a lack of a market from which to choose (which we will discuss below). It is worth noting that at this early stage of implementation within the NDIS, participants are currently choosing from a defined (and costed) set of services, akin to a ‘menu’ of services, which has implications for the flexibility of funds being provided and the goals that can be set by individuals [75, 78].
Personalised budgets have the ability to advance health through empowerment and better utilization of care and support resources. However, they also have the potential to entrench or expand existing inequities, and early evidence indicates that this is a real risk for the NDIS [79, 80]. For example individuals with intellectual disabilities – who are already more marginalized – appear to fare worse under such arrangements unless they have advocates or strong support networks (i.e. exercising less choice and control and experiencing worse health outcomes) [33, 42]. Moreover, socially isolated people or those without strong support networks and resources to supplement personal budgets also do not reap the same benefits as those who do have strong supports. In this instance, there is a risk of significantly extending inequities between these individuals and other groups accessing personalized care budgets (and the rest of the population) – consistent with the inverse care and prevention law.
Differences emerging from disability service and support markets
The NDIS is underpinned by a market based approach [34, 64]. This market includes services and supports – some of which may be disability specific while others may be more general or mainstream. Internationally, markets have been treated by governments as a panacea for social policy challenges: “choice and competition as a model for public service delivery… fulfils the principle of autonomy, and promotes responsiveness to users’ needs and wants; it provides incentives for providers to provide both high quality and greater efficiency; and it is likely to more equitable than the alternatives” [36]. Hence, for both sides of politics, ‘choice and control’ of public sector services through markets are seen as a way to gain economic efficiency, while enabling citizens to have a more empowered relationship with the State. However, governments find markets of all types notoriously difficult to regulate and manage in predictable and reliable ways and markets, by very nature, tend to produce winners and losers in terms of both operators and users [19]. That is, citizens need to have the right capabilities to exercise choice and control [58, 81]. This is noted as an area of concern in the two documents on market safeguards, yet it remains unclear whether (and if) differences in capabilities can be overcome: “central to the framework are developmental safeguards designed to make sure participants have the capabilities and supports to be able to choose quality supports and to build good and safe lives” [82]. Yet, as Soldatic [58] notes, this will be challenging for people who are marginalized and experience multiple and complex forms of disadvantage.
While the NDIS is anticipated to have a highly diverse and well-functioning market by full scheme implementation in 2019, how exactly this market will function and what role government will have remains undecided [61, 82]. This is again reflective of the international literature; questions about how to develop, oversee and ensure the effectiveness of public sector markets remain vexed [45, 68]. As noted earlier, the scope and scale of the NDIS market makes its development particularly challenging. The market must cover all types of disability as well as account for enormous geographical spread, in addition to other types of diversity (e.g. culturally and linguistically diverse communities and people with low literacy). This presents two critical challenges to ensuring equity: ‘thin markets’ and market failure. Thin markets emerge when there are not enough providers in a public or private market for it to function as intended [83]. Thin markets have both a low number of buyers and a low number of sellers, and may also suffer from price volatility – a combination of characteristics that leads to market inefficiencies or failure (i.e. complete market collapse where no providers are left or significant gaps. Thin markets and market failure are more likely to occur in regional areas or for those with highly specialized needs, as noted in implementation documents: “The risk of market failure remains an issue in many areas. Market failure can include the failure of individual suppliers or organisations, localised market failure or more systemic failures related to scenarios such as predatory practices, unbalanced supply and demand, unbalanced information about support, consolidation, decrease in participant choice, and decrease in the quality of service choices.” [64].
In the UK context Gash [45] .has shown that to guard against inequities emerging from public sector markets governments must participate in: engaging closely with users, provider organisations and others to understand needs, objectives and enablers of successful delivery; setting the ‘rules of the game’ and allowing providers and users to respond to the incentives this creates and constantly monitoring the ways in which the market is developing and how providers are responding to these rules, and the actions of other providers. Governments must also be involved in adjusting the rules of the game in an attempt to steer the system (much of which is, by design, beyond their immediate control) to achieve their [government’s] high-level aims [45].
The quality and safeguard reports indicate that the role the Australian government will play in terms of ‘market stewardship’ is yet to be determined [82]. The nuances of that decision will have far reaching consequences for health equity.
Widening inequities between groups on the basis of locality?
Rather than one national market, the NDIS actually requires many local markets that account for geographic diversity. The NDIS acknowledges that developing these markets will take time: “developing a strong, contestable market for disability supports is a long term project” [84]. In inner urban centres this may be achievable, but potentially less so in outer urban areas particularly with regard to Indigenous, culturally and linguistically diverse communities with potentially low prevalence of particular types of disability. In rural and, particularly, remote areas ‘thin’ markets (i.e. where only one or two providers exist) are likely to emerge:
“Where there are thin market segments, such as rural and remote areas, providing choice will be more difficult and may require a greater level of market facilitation. It should also be acknowledged that there may be high personal and economic transaction costs to change providers, and these should be minimised.” [64].
In urban or peri-urban areas low prevalence of disability (or specific types of disability or particularly challenging situations with few or no support providers) may also present challenges in terms of thin markets. Thin markets are also susceptible to market failure, where no new providers enter the market place due to high costs of entry or lack of business prospects, and existing providers are challenged by being paid retrospectively for business, gaining the necessary breadth and depth of expertise and business costs running higher than the funds collected via individuals. This is particularly risky while prices are set by the government (something which is hoped by policymakers, in time, will change) [34, 64]: “Ultimately, the pricing role of the Agency would diminish as the market developed, and this could allow disability services to even more closely resemble the economy-wide service sector” [34].
In the case of market failure or thin markets, individuals already disadvantaged geographically are unlikely to be able to exercise true choice and control through personalisation. It was mooted in the initial report recommending the NDIS that some ‘block funding’ by governments (i.e. the traditional contracting and procurement processes that currently exist) may continue: “block funding may continue in certain circumstances, such as in building community capacity, pilots of innovative services, in some rural areas where markets might not support the provision of any service, and where there is a need to build longer term capacity, such as Indigenous-specific services” [34]. Building capacity falls within the ‘Information Linkages and Capacity Building’ (ILC) component of the NDIS, which recognises that not all needs can be met through personalised funding and that some degree of ‘whole of community’ capacity building is required. The ILC component may therefore act to prevent inequities between areas and or groups through supporting communities and mainstream services to become more inclusive [85]. However, concerns have already been raised about the capacity for ILC supports to be delivered given the potential workload associated with those carrying out this role (known as ‘Local Area Coordinators’), who support NDIS participants with planning and identifying mainstream and disability specific services [86].
Additional or continued block funding has been suggested as a potential (last resort) means by which to address market inequities [34]. Markets, in the view of the Commission, produce better outcomes than hierarchical public service systems:
“The scope for full competition may not always be present when suppliers have market power, consumer knowledge is poor, where services are complex, or where the market context would be likely to lead to distorted consumer decisions. Markets may also take some time to develop, as will the capacities for making informed choices by people with a disability and their families (hence the need for supporting people in implementing self-directed funding). However, choice among specialist disability services may often still produce better outcomes even where markets are imperfect” [34]
Hence, the proposed market mechanisms may exacerbate inequities between urban, rural and remote areas. Under these conditions, the government suggests that block funding should continue:
“In such cases, the National Disability Insurance Agency should block fund suitable service providers to work with local communities to deliver disability supports to Indigenous Australians. This approach will be particularly necessary in remote areas. In doing so, it should work with existing government agencies, Indigenous advocacy groups and other funded service providers” [34].
However, if the core of the NDIS is to offer empowerment through choice and competition, there is a need to recognize that not all individuals will have access to robust or functioning markets by which to exercise this control. Moreover, block funding could limit innovation with regard to services. In essence, two schemes may emerge – one in urban areas with robust markets, and a second (lesser) scheme subsidized by government in rural and remote areas that continues to offer little choice. From a social determinants of health perspective, individuals likely to access these continued block-funded services are also more likely to already be experiencing other forms of inequity and/or disadvantage. For example, individuals living in Australian rural and remote areas have lower incomes, and worse health and wellbeing [87]. They also experience more challenges accessing health, housing and education – compounding social risk factors for health [87].
It is alarming that it has been suggested that people in remote areas with complex needs may need to relocate:
“the diversity and level of care and support available in major cities cannot be replicated in very remote areas. In some cases, Indigenous Australians with complex needs will have to move to regional centres or major cities to receive appropriate care and support (as is also the case with non-Indigenous Australians)” [34].
When considered in light of the UK findings [33] that individuals are more likely to experience the promised gains of personalisation when strong support systems are in place, relocating individuals away from such support systems such as kinship, familiarity and community will have serious implications for care outcomes and equity.
While this paper has focused on the example of rural and remote communities, these concerns are also applicable to individuals with rare or low prevalence disabilities that require specific services, resulting in an inability to access appropriate care even within a metropolitan area. It remains unclear how thin markets (and associated lack of choice and control) will be managed.