Redressing or entrenching social and health inequities through policy implementation? Examining personalised budgets through the Australian National Disability Insurance Scheme

It is now well established that many of the key drivers of health reside in our everyday living conditions [1, 2]. In the last four decades a large volume of research evidence has been developed which documents the varied ways in which social, economic, political and cultural environments impact upon health [2, 3]. Many of the societal level factors that affect health – known as the ‘social determinants of health’ – are social issues which exist outside the health sector such as housing, education and employment. Of particular concern, are inequities or disparities in health and wellbeing that occur because of the unequal access to social and economic resources, and differences in exposure to certain conditions [3–6]. Hence, unequal social conditions have been found to lead to differential and unequal health outcomes [3]. Moreover, some have argued that the existence of health inequities and other forms of social and economic inequity affect the whole population’s health not just that of the most disadvantaged groups [7].

Increasingly, research attention has been given to political agenda setting for the social determinants of health (i.e. how to identify the right policies for addressing health inequities, and how to ensure they receive political support) [8–16]. While designing policies that can improve the social determinants of health is critical, so too is ensuring these policies are appropriately administered and implemented [17, 18]. Even universal policies (i.e. those which cover the the whole population [19] and are argued to protect against inequities [3, 20, 21]) have the potential to entrench or expand inequities during implementation processes without careful attention to existing inequities, and how they might interact with the policy being implemented [19].

This paper is concerned with the implementation of a national disability policy in the Australian context. Globally, one billion people (15% of the world’s population) are estimated to live with a disability [22]. More than four million Australians report having a disability, including over 2.2 million adults of working age (16% of the working age population) and 4.3 million in total (18.3% of the whole population) [23]. These individuals have poorer health and social outcomes than non-disabled people [24], making disability an important social determinant of health. Research has shown that Australians with disabilities are also likely to be exposed to well-established adverse social determinants including social and economic exclusion, unemployment, unaffordable housing, and weak social networks [24–28]. Hence, evidence indicates that the poorer health of people with disabilities is not simply a product of their impairment but may, in large part, be due to the circumstances in which they live [24, 27]. These circumstances have been shown to not just include the immediate living conditions of individuals, but also the broad social and political structures (i.e. welfare state models) in which they reside [29, 30]. Additionally, social and economic outcomes appear to be worse for people with mental health problems, acquired brain injury and people with intellectual disabilities than for people with physical disabilities or sensory and speech problems, indicating the need to understand interactions between living circumstances and particular health conditions and impairments [24, 27]. How policies are designed and implemented – and the ways in which they impacts the lives of people with a disability – therefore has profound consequences for health outcomes and in turn social and health inequalities.

The Australian National Disability Insurance Scheme (NDIS) draws on policy trends in the UK and Europe [31–33] towards ‘personalisation’ of social services. Under these approaches funds are given directly to people with a disability so they can purchase services and supports that best meet their needs, rather than standard ‘one size fits all’ programs [34].

It has been argued that the NDIS has the potential to secure gains in health for hundreds of thousands of Australians living with a disability [34]. The different model of care (i.e. personalisation) used by the NDIS is meant to enable access to more appropriate services, empowerment, social and economic participation – all of which are known social determinants of health [2, 3]. However, policies are only as good as their implementation [17, 35]. As noted by Carey and Friel (2015), from a population health perspective, there has been relatively little study of the complex policy frameworks and administrative layers through which policies that impact the social determinants of health are implemented.

In this paper we provide an overview of the Australian National Disability Insurance Scheme (NDIS). We then analyse the potential of the scheme to redress, entrench or extend social (and in turn health) inequities, using design documents and reports released during implementation. Our analysis aims to: (a) demonstrate how the NDIS and its international counterparts might contribute to or reduce social and health inequalities and (b) develop knowledge of how social policies can inadvertently extend health inequalities unless careful consideration is given at both policy design and implementation stages. We argue that policies like the NDIS demonstrate that the way that funding is allocated, and not simply the amount of funding allocated, matters for health outcomes and inequalities.

Over the past 30 years there have been major shifts in the way government(s) deliver public services. Increasingly, governments aim to give citizens greater choice and control of the public services they utilize [36]. As a result, we have seen the creation of various forms of public sector markets [37, 38]. Here, governments create ‘markets’ through contracting and tendering processes or by individualized care budgets (i.e. where individuals are given money to purchase services that meet their needs) [36, 39, 40]. This has occurred in the UK, Germany and the Netherlands to name a few [41]. By enabling choice and control, proponents believe that personalized budgets and care markets improve wellbeing [36]; rather than utilizing a ‘one size fits all’ service, citizens can (in principle) choose services that best meet their needs. The NDIS represents a further extension of these principles by governments internationally; the NDIS is the first major social policy in Australia that utilises personalized budgets and is subsequently creating a public service quasi-market for disability care [34].

Individual budgets (provided within personalization approaches to policy) in the disability policy first emerged in the United Kingdom in adult social care, inspired by earlier social movements in the US [40]. This was part of both a fight for redistribution and recognition by disability advocates [42]. The personalisation agenda has also emerged from broader pressures on welfare states. Faced with a range of fiscal and social pressures, we have seen shifts in many industrialised countries away from collective social welfare provision in favour of markets and ‘self-directed care’ [43]. However whether these approaches lead to improvements in people’s lives is still a matter of debate [44, 45].

The Australian National Disability Insurance Scheme (NDIS) is Australia’s first serious foray into personalised budgets [46]. The NDIS was passed in legislation with (rare) bi-partisan support in 2013 with broad public and political support [47]. Under the NDIS, approximately 460,000 individuals who have a significant and permanent disability will receive personalized funding budgets [34, 48]. These funding packages are determined on the basis of need by a newly established agency – the National Disability Insurance Agency in conjunction with scheme actuaries who determine pricing and, to some extend, the size of packages (see [49, 50] for more information on the implementation of the NDIS). Individual packages are on average between $10,000 and $30,000, but can range into the hundreds of thousands of dollars [51]. By providing choice and control, the Scheme is expected to deliver benefits to these individuals, their carers and families – extending the potential benefits of the scheme to hundreds of thousands more individuals [34].

The scheme will be fully implemented across Australia by 2019, including in urban, rural and remote localities and across a diverse range of disability types [34, 48]. Scheme rollout was commenced in seven trial sites which targeted different population groups. Some trial sites prioritized particular types of disabilities, others age, while some were geographical [52]. The scheme shifted to national roll out in 2016 [49], At present 100,000 Australians are signed up to the scheme, with rollout determined by geographical region [53]. Under the new ‘personalised’ model individuals are given funding packages, determined by their level of need and self-defined goals, with which to purchase services [34]. This is anticipated to secure choice and control for the person with a disability.

As the architects of the NDIS, the Australian Productivity Commission perceived the previous disability care system to be a piecemeal and inequitable system which has negatively impacted those living with a disability [34]. Previous to the NDIS, disability care services were funded according to a commissioning model in which community based service providers competed for 1–5 year blocks of funding from which they ran a variety of services [34]. In addition to commissioned community service providers, private service providers functioned in a market based system with care given to those who could afford to pay from private funds. Such private service provision options continue today. Advocacy for a move to the NDIS focussed on changing the balance of power in decision making about the lives of people with disability, ostensibly to create a more equal disability care system [34, 47]. Here, advocates were drawing on debates in social policy which demonstrate that when benefits and supports are generic (i.e. one size fits all) they produce unequal experiences and outcomes for users because they fail to take account of differences in need [19, 54, 55]. Moreover, the previous commissioning arrangement caused a privileging of professional’s (public servants) opinions in decision making about “fundamental elements of disabled people’s lives such as where and how they should live, whether or not they should work, the type of school they should attend, the type of support they need and whether or not they should become parents.” [47, p17] The previous system was widely regarded as insufficient and inequitable because of its highly fractured and ‘one size fits all’ approach [34, 47, 50, 56, 57], which has been shown in public health to be inconsistent with the needs of vulnerable groups [21].

While there are multiple options for structuring a Scheme to allow for greater choice and control in care delivery, for example pay-for-performance or spot contracting, the decision by the Australian Government, informed by the Productivity Commission and a large community based campaign, was for an individualised payment system [34, 47].

The NDIS is positioned as differing from the previous arrangements due to a focus on choice and control: the Productivity Commission claims that previous disability services led to “disempowerment, no choice, a take or leave it attitude of service providers and retribution for leaving, or complaining, about a service that is unacceptable, inadequate or unsatisfactory” [34]. In addition to the focus on choice and control the National Disability Insurance Agency, tasked with implementing the Scheme, has stated that “at the heart of the NDIS is equity… We are finally moving away from a fundamentally flawed and inequitable system. A system… described as ‘under-funded, fragmented, unfair and inefficient’” [56].

Whether the NDIS will prove to be a more equitable system than the previous arrangements or whether it will simply perpetuate a different form of inequality remains unknown. At the outset, it is worth noting that there are important questions regarding the equity of service, support and outcomes between the 460,000 eligible individuals (i.e. those with a permanent or likely to be permanent and severe disability) and that some four million ‘ineligible’ individuals who may receive supports through the Australian National Disability Strategy and other sources, but less than participants [for more information see 57]). While this is not central to this paper, this raises questions about the equity of disability funding and support in Australia more broadly [see 58].

While personalised budgets have been used in other countries, the Australian experience is unprecedented in several important ways. Firstly, the geographical spread outstrips that of other countries. Secondly, in the UK individuals have the choice to opt into personalised schemes, however in Australia the scheme is compulsory for eligible individuals [46]. Hence the scale of the NDIS is broader and deeper than its international counterparts (such as the National Health Service in England which has utilised personalised approaches in aged care and disability, and Brukerstyrt Personlig Assistanse in Norway, and similar programs in Scandavia and Denmark [31, 32, 59]), offering important opportunities for learning.

As part of a longitudinal study on the implementation of the NDIS, we conducted a systematic document search of policy documents pertaining to the NDIS on the websites of government departments with auspice over the design and implementation of the scheme. These are: Commonwealth Department of Social Services, Coalition of Australian Governments [COAG] and the National Disability Insurance Agency. We also included the Australian Productivity Commission which, while not a government department, has played a highly significant role in advising the government on the design of the NDIS – their report is considered to be the ‘blueprint’ for the NDIS and its implementation.

This search captured both major policy design and implementation documents (n = 25). Documents range from key design documents (i.e. Productivity Commission 2011), to implementation reports [e.g. 60] and reviews [e.g. 52] (see Appendix for full list).¹ Many (n = 21) pertain to operational aspects of the scheme, e.g. financial reports and numbers of participants enrolled. We identified four critical documents that spoke to the question of equity and provide insight into the principles and philosophy of the NDIS. These are; the Productivity Commission’s design and implementation guide for the NDIS [34], the proposal, consultation report and final plan for a National Quality and Safeguards Scheme [61–63] and a key document on the development of the NDIS market [64].

The five documents identified as relevant were then analysed thematically with the goal of locating decisions made during design or implementation that had consequences (positive or negative) for social and health inequalities. We used the empirical evidence base on the social determinants of health inequities as a guide to assist in identifying policy decisions which could impact inequities and inequalities. In particular, we were guided in our analysis by the Commission on the Social Determinants of Health and the Marmot Review of Health Inequalities [2, 3]. In doing so, we sought to critically analyse how the NDIS could modify, redress, entrench or extend social (and in turn health) inequities.

Three interrelated areas pertaining to differences in care and outcomes emerged from our analysis particularly regarding differences in ability to exercise choice. These related to disability type geography, geography and issues related to disability markets. While not exhaustive, these represent the areas of most significant vulnerability for entrenching or creating inequalities and inequities. All three intersect with the question of whether markets can deliver high quality and equitable services to citizens.

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.

The NDIS has the potential to secure gains in the wellbeing and health of hundreds of thousands of Australians, however this can only be achieved with careful attention to the inequities above and others as they arise. Scheme architects have argued that it has the potential to replace a piecemeal and fragmented set of state-determined services with an empowering model of user choice and control. In line with the findings from the Marmot Review, we would expect this to translate into substantial health gains not just through better services but also psycho-social benefits that accrue through increased social inclusion and economic participation [3].

However, without careful attention to both existing inequities and, diversity and difference across populations (e.g. different disability types and different localities) market based have the serious potential to entrench or even widen inequities. As the NDIS is currently set out, this could occur through inefficient or ineffective (i.e. thin) disability markets, market failure in some areas or by imposing conditions on recipients which ultimately undermine their health (such as forced relocation to achieve choice and control). While continued block funding has been offered as one way to prevent this, we argue that this will lead to inequities in choice and control (and therefore health outcomes). Thus, in market based schemes supplementary funding must be offered in the form of service provider support or seed funding (i.e. to encourage providers to move into areas they haven’t previously worked in).

The NDIS is one of the most ambitious personalised funding schemes in the world. As it moves through implementation, the potential for it to adversely impact existing inequities should be monitored and adjustments made such as, for example, continued block funding in remote areas or continued ‘seed’ funding for establishing better services in thin markets. The implementation of NDIS, and it’s impact on health outcomes, holds lessons for any country that looks to implement individualised funding schemes for care provision. Social policies can inadvertently extend health inequities unless consideration is given to these during design and implementation. Policies like the NDIS show that the way that funding is allocated, and not simply the amount of funding allocated, matters for health outcomes.