Disability Policy and Active Citizenship: The Case of Australia’s National Disability Insurance Scheme

Method

This article consists of an analysis of the NDIS, its eligibility criteria, and its needs assessment process. Some aspects of the analysis are based on Esping-Andersen’s welfare regimes typology as well as Johansson et al.’s (2011) concept of the welfare diamond. We also rely on Drake’s (1999) definition of citizenship as shown in the next section. This article is limited by the fact that we have not analyzed how participants experience different aspects of the NDIS. The purpose here is rather a theoretical reflection on the mechanisms and implications of the policy. As of March 31, 2017, the NDIS counted 75,567 participants with individual plans with approximately 400,000 more people to be included in the scheme within the next three years (NDIS, 2017). The way in which the current and future participants’ possibilities for exercising their citizenship is affected will necessarily have to be empirically studied to verify the current analysis and claims.

Redefining the Welfare State: From Service User to Active Citizen

One major concern when analyzing programs that entail individual funding is that rather than being motivated by providing more choice and flexibility to service users, they may represent a withdrawal of state responsibility, on the one hand, and a reduction of public spending, on the other hand (Boucher, 2008). It would indeed be a mistake to assume that simply because Australia, with the NDIS, will have doubled its state and federal expenses on disability services by July 2019 to AUD 22.1 billion per year (National Commission of Audit), that it is done with the sole intent of supporting people with disabilities. This increase in spending must also be viewed as an economic investment as illustrated in the Inquiry Report (2011) conducted by the Australian Government’s Productivity Commission ¹ (AGPC) which shows that improving people’s well-being and increasing their participation in the labor market is also a way of increasing “opportunities for people to buy more goods and services, have greater leisure, lead better lives generally, or contribute more broadly to society” (AGPC, 2011c). In this respect, the scheme was partly introduced with the idea that its economic benefits would significantly exceed its additional costs and, thanks to better efficiency, also reduce the costs in government services, most notably in the health care system and income support system (AGPC, 2011c). These economic benefits may also be one of the reasons why, despite fiscal austerity measures implemented by both Tony Abbott’s (2013–2015) and Malcolm Turnbull’s (2015–2018) neo-liberal governments that both inherited the implementation of the NDIS, it has continued to receive full funding and is on track to be fully rolled out by 2019 (NDIS, 2017). Of course, these forecast economic benefits for Australia are positive and welcomed, but they are also relevant in understanding some underlying motivations of the introduction of the NDIS and must be taken into account concerning how people with disabilities are viewed, what the policy aims to achieve, and what view of disability the policy (re)produces.

Necessarily, as the NDIS changes the fact that the state now provides funds instead of services, it represents a withdrawal of state responsibility considering it is no longer involved or held accountable for the services. As noted by Dickinson et al. (2014), this may have the effect of transferring risks (and blame) from the state to service users, especially considering that “the market is under no obligation to respond to the wants and needs of individuals and will only do so if it is economically worth the effort” (Fawcett & Plath, 2012, p. 754). Although transferring the risk to people with disabilities may seem like an acceptable consequence of providing them with choices, if they fail to manage their own care, they are likely to be blamed even though it may be “due to issues outside of their control” (Dickinson et al., 2014, p. 420). Hence, those who do well in negotiating with providers are likely to be those who are advantaged by education, English literacy, financial resources, gender, transport, geographic location, family supports, and access to technology (Fawcett & Plath, 2012). It therefore remains to be seen if and how the state will take responsibility for the outcomes of the services delivered, even if it has not had a direct role in designing or delivering the services (Dickinson et al., 2014).

To better understand these two dimensions (public spending and responsibility) of the NDIS, we can look at them through the four sectors of the “‘welfare diamond’: the household and informal support sector; the state or public sector; the voluntary and nongovernmental sector; and the care market or private sector” (Johansson et al., 2011 drawing on Evers et al., 1994; Jenson, 2003). These four prisms allow us to better see how the NDIS represents a change in the role of the welfare state. In short, the NDIS affects the welfare diamond on two different levels. First, economically, the costs related to disability have clearly and significantly been shifted from the individual and informal care sector to the state and public sector even though this is in part seen as a way of reducing public spending. This shift in itself is of significance considering that other countries (e.g., Great Britain) have lately been going in the opposite direction by retracting state expenses, notably by tightening eligibility criteria (Roulstone, 2015). As such, the policy represents a shift toward a “more family-oriented welfare state” (Johansson et al., 2011), that is, individuals will be less dependent on work and their families will be somewhat relieved of the costs related to disability. On a second level, there is a shift of responsibility and accountability away from the public sector toward the other sectors, namely the individual, family, and informal care sectors, although the extent of this shift is still unclear. Its extent will partly depend on the NDIS’ willingness to listen to academics, advocacy groups, and people with disabilities as the scheme continues to roll out and as new challenges and issues arise. Considering this risk of transferring blame, one suggestion has been that while still operating on the assumption that “people have capacity to make their own decisions,” the NDIS could “include a role for itself in deciding when safeguards should be implemented, especially where there are concerns to protect a particularly vulnerable person from abuse, exploitation or neglect” (Duffy & Williams, 2012, p. 8).

These risks and changes in the welfare diamond do not however imply that the NDIS fails to extend disabled people’s citizenship. For Drake (1990) being a citizen is to be able to (if desired) take part in the decisions that create and re-create the contours of a society, and to be able to participate in key functions such as work, leisure, political debate, travel, and religious observance (p. 41). For Prince (2009), “citizenship is much more than a political concept and a legal status” (p. 3), it entails a question of inequality as certain members of society can more easily participate in these activities while others are hindered. In this sense, we would argue that the importance here is not simply that the state is taking less responsibility for delivering services or even that it is providing more financial support to individuals, but rather that it is changing the role of people with disabilities into active citizens. This notion of active versus passive citizenship is important in understanding the transformation introduced by the NDIS. According to Morris (2005), “the social rights guaranteed in the aftermath of the Second War World [in reference to Marshall’s perspective (1950)] encouraged passivity diminishing disabled people’s self-determination and individual autonomy, through their systemic exclusion from social activity via state-sponsored segregated institutional provision” (quoted in Smith, 2013, p. 405). People with disabilities have since been considered, for the most part, as service consumers, as passive recipients of social rights. The NDIS changes this not only by promoting a more active form of citizenship and by recognizing the importance of choice, control, and social and economic participation of people with disabilities, but also, and probably mainly because it recognizes the importance of how support is provided.

Esping-Andersen (1990), in arguing that social-welfare policies influence employment and social structures, astutely pointed out that “the existence of a social program and the amount of money spent on it may be less important than what it does.” To that we might add “and how it does it,” that is, how funds are translated into support for individuals. Duffy (2010) explained on this subject that what distinguishes individual funding is that people are treated as citizens, not service users. Instead of

the government [giving] money to the professional who turns that money into services that are offered to the needy person as a gift—that is, something that cannot be defined, shaped or controlled by the individual . . . the government defines that money as an entitlement, and the individual (with their community) uses this entitlement to negotiate any professional support necessary.

In other words, a system that considers participants as entitled to control these funds does not treat the person as a mere recipient but “distributes responsibility” and thus creates empowerment (Duffy, 2013). In this respect, the NDIS appears to mark a shift between two types of welfare regimes. Australia is typically considered to be “a liberal welfare-state regime” (Prince, 2010, p. 201) which is characterized by modest and restrictive assistance provided to people whose income and capital is insufficient to meet their basic needs (means-tested assistance). This regime often has the effect of stigmatizing assisted people and driving them toward the labor market (Esping-Andersen, 1990). The NDIS marks an important rupture with this kind of welfare regime considering that the state is not simply protecting the population by ensuring basic needs are met and by “securing rights to services” (Power et al., 2013, p. 8), it is ensuring that socially disadvantaged groups can participate in various social activities and achieve their goals: “The NDIS aims to give people a life consistent with their cultural, religious, and personal preferences” (Laragy et al., 2015, p. 283), which is accomplished through the flexibility of individual funding. The NDIS thus appears to mark a shift away from a liberal welfare state regime toward what Esping-Andersen refers to as a social democratic welfare regime based on the principles of emancipating individuals from reliance on their family and work (Esping-Andersen, 1990). This welfare regime is also closer to a philosophy of “from each according to his ability, to each according to his needs,” a regime that is considerably more consistent with a social model view of disability. We can therefore claim at this stage that on the level of the changing role of the state, despite any possible apprehension concerning other motives behind the funding or the withdrawal of state responsibility, the way in which the NDIS defines its individual funding packages as entitlements shows how it is based on social and economic participation of people with disabilities. For this to be true however, it must also translate into the concrete measures of the policy, what we refer to here as the mechanisms of the policy, and in particular the eligibility criteria and the needs assessment process. In the next two sections, we analyze these mechanisms to illustrate this claim.

Eligibility Requirements: Becoming a Participant

Assessing who is included and who is excluded has important implications concerning the principals and outcomes of the NDIS. Three requirements must be met to become a participant: The person must (a) be aged less than 65 when applying; (b) reside in Australia and be “an Australian citizen, the holder of a permanent visa, or a special category visa holder”; and (c) meet the NDIS’ (2016a) specific disability requirements.

These criteria suggest that the NDIS has both a universal and a targeted approach. It is universal in the sense that eligibility depends on citizenship and residency and not on work, capital, income, or merit. In this regard, it represents a shift toward what Esping-Andersen (1990) refers to as a “decommodification” policy: The service is perceived as a right and the state supports individuals to maintain their means of existence without having to rely on work (p. 248). In other words, as remarked by Miller and Hayward (2017), “need is the basis of NDIS eligibility, rather than where, when or how the disability was acquired.” This substantiates the above claim concerning a shift toward a more social democratic welfare regime and represents a substantial gain for Australians with and without disabilities considering that prior to the NDIS, “only no-fault accident compensation schemes met people’s lifetime care and support costs efficiently” (AGPC, 2011a). In addition, when mandated to inquire into implementing the NDIS, the AGPC (2011a, p. 43) called attention to the fact that “in one sense, the NDIS is for all Australians, since it would provide insurance against the costs of support in the event that they, or a family member, acquire a significant disability.”

On the other hand, the program has a targeted approach precisely because it targets a specific population (people with permanent impairments), as outlined in the rules about becoming a participant:

A person will meet the disability requirements if they have a disability that is attributable to an impairment that is permanent or likely to be permanent and that results in substantially reduced functional capacity; alternatively, a person can access the NDIS through the early intervention requirements without having substantially reduced functional capacity. Instead, the early intervention requirements consider the likely trajectory and impact of a person’s impairment over time and the potential benefits of early intervention on the impact of the impairment on the person’s functional capacity. (NDIS, 2016a)

At first glance, one could argue that this definition resembles a medical or individual approach to disability. Disability is defined as “attributable to an impairment” (NDIS, 2013b, p. 24), which, for most proponents of the social model, wrongly implies that disability is a personal and medical problem caused by the impairment (Barnes et al., 1999, p. 25) and therefore that such a definition fails to recognize social and economic barriers. Furthermore, even though the NDIS is supposedly based on the CRPD’s principals, its disability definition is significantly different considering that the CRPD recognizes “that disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinder their full and effective participation in society on an equal basis with others” (CRPD, 2006). The CRPD’s definition thus surpasses the impairment/disability dichotomy, whereas the NDIS’ definition does not.

However, for any disability policy or program, eligibility requirements must be based on proof of impairment and this criterion does not automatically imply an individual and medical approach to disability. In fact, the scheme mentions the importance of eliminating “external barriers” and “changing the social context” (NDIS, 2016b). Furthermore, the disability requirement states that “the impairment or impairments [must] affect the person’s capacity for social and economic participation” (NDIS, 2016a). In that respect, even though the NDIS measures the person’s impairment for eligibility and acts on an individual level of compensation, it does not take a charitable perspective in compensating individuals for their limitations, but with a view of supporting people in overcoming social barriers themselves. The scheme is indeed based on the idea that “people [with impairments] are usually better placed to know what would meet their needs than service providers” and can thus better use the funds to reduce the impact of external barriers (AGPC, 2011b, p. 151). The NDIS (2016a) also distinguishes between medical intervention and its own area of intervention by stating that an impairment is permanent “only if there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment.” This implies that people with mental health illnesses, for example, can continue to receive psychiatric care through the health system, but can also receive funds from the NDIS to accomplish everyday life activities. The scheme also considers fluctuating, episodic, and degenerative impairments as permanent (NDIS, 2014b).

Finally, on a more problematic note, the requirement of being aged less than 65 when applying is somewhat questionable. Although participants who reach the pension age can “elect either to stay with the NDIS or move to the aged care system” (AGPC, 2011a), not being able to become a participant after the age of 65 suggests that people no longer have lifelong goals and aspirations and that it is not worth making a plan (addressed in the next section). As one participant in the Productivity Commission stated, “My life does not dramatically change at Pension age. My goals and aspirations continue as they have for the last 30 years” (Barnett, 2011).

In summary, although the NDIS’ definition of disability fails to recognize disability as a concept which results from the interaction of people with impairments and the rest of society, the eligibility criteria are fairly inclusive and indicate a clear intention to compensate individuals who face social and economic barriers. Furthermore, although it is arguable that a policy specifically targeting people with disabilities implies an unnecessary distinction between people with and without disabilities that can have the effect of further stigmatizing those with disabilities (Bickenbach, 2014), it is also a way of recognizing and distinguishing between those who are socially privileged and those who are socially disadvantaged. From this perspective, the NDIS can be considered a targeted policy that constitutes a form of positive discrimination for those in need and based on the principle that identical treatment policies cannot achieve substantive equality considering social disadvantages faced by certain groups and individuals (Schnapper, 2011). The scheme therefore focuses on equality of opportunity by giving people the means to overcome social disadvantages.

Needs Assessment and Support Plans

The first step, once a person meets the access requirement and becomes a participant, is to prepare a support plan based on their goals, needs, abilities, personal living context, and activities (NDIS, 2014c). This is done in two stages. First, the participant prepares a statement (written or recorded) of “their goals, objectives, aspirations and circumstances.” Second, a “delegate” of the National Disability Insurance Agency (NDIA) prepares a statement of support with the participant and—if desired by the participant—their family, caregiver(s), or friend(s) (NDIS, 2013a). This second stage takes the form of one or more planning conversations during which the delegate determines the level of needs and funding of the participant. To do so, the delegate is required to use a Needs Assessment Tool in a flexible and person-centered way (NDIS, 2014c):

The Assessment Tool enables the delegate to scope and define the participant’s particular needs taking into account their current living arrangements, their strengths and abilities and their goals and their activity limitations, participation restrictions and support needs arising from their disability. It is not a diagnostic tool. Should the conversation indicate the need for further specialist assessment, to inform need and appropriate supports, this will be arranged.

This implies that the needs assessment process under the NDIS is not a deficit-based assessment, that is, one based on what the person cannot do, which with other policies has been highly criticized for resulting in marginal levels of assistance and for failing to contribute to social participation (DSA, 2012). In other words, through the NDIS’ needs assessment process, supports “are not ‘done to people’, but with them” (AGPC, 2011b, p. 101). The idea is that the process should take into account individual characteristics and preferences, consider people’s needs and goals, give them choice over support and make them subjects rather than objects of their support and their own lives (Barnes & Mercer, 2006). Nevertheless, a recent study of how the NDIS communicates with participants has shown that this process has been difficult to achieve for certain groups of people with disabilities who are socioeconomically disadvantaged (Hui et al., 2018). The results reveal important obstacles such as the unawareness of the existence of the NDIS, the fact that the application process can be overwhelming and the lack of assistance from family and friends to support them to apply. The authors provide some recommendations relating to improving the NDIS’ means of communication, better supporting applicants, and clarifying the eligibility criteria. This study adds to the importance of improving tools for evaluating the needs of people with disabilities and also shows the importance of better taking their socioeconomic conditions into account.

In addition to ensuring that support will adequately meet people’s needs and allow them to pursue their goals and aspirations, the Assessment Tool lays out some other basic guidelines. For instance, the plan must also “develop and support the capacity of people with disability to undertake activities that enable them to participate in the community and in employment” (NDIS, 2014a). The delegate is also required to take into account “what is reasonable to expect families, caregivers and informal networks and the community to provide.” The NDIS considers that it is normal for parents to provide and care for their children, but it also asks the delegate and participants to consider “the risks to the wellbeing of the participant [of any age] arising from the participant’s reliance on the support of family members” (NDIS, 2014a). This is consistent with the earlier statement concerning a shift toward a more family-oriented welfare state.

A closer look at the Assessment Tool (see NDIS, 2014a), however, reveals that it is quite limited and basically consists of a checklist of general considerations that the NDIA delegate must keep in mind when making a plan. Aside from being a list of important considerations, it does not say how the delegate must ensure these things are achieved in practice and there is no systematic way of evaluating a person’s needs, additional costs of living related to their disability or necessary funding. In other words, the Needs Assessment tool is not really a systematic evaluation tool and the support funded by the scheme therefore largely depends on the assessment conversation(s) between the delegate and the participant and on how well the participant and their family can express and negotiate their needs and aspirations. Funding can only be obtained once a need is recognized and included in the Support Statement (Stage 2) by the delegate, which depends on what was originally expressed and included in the participants’ statement of goals and aspirations (Stage 1). In addition, a “participant’s plan cannot be varied after it comes into effect,” it can only be replaced by a review of “the participant’s statement of goals and aspirations” (Stage 1) (NDIS, 2013b). This implies that it is not necessarily easy to change a plan or receive more funding if a goal or an aspiration was forgotten in the first stage of the needs assessment plan.

In practice, this method (or lack of method) of evaluating needs can be a significant problem. For example, a major aspect of the NDIS is that it covers any additional living costs related to the participant’s disabilities. Research has however shown that distinguishing “which [costs] are ‘additional’ to what non-disabled people require” can be very challenging (Hill et al., 2015, p. 1). This will likely result in unmet needs for certain people depending on what is originally negotiated and included in their statements. In light of this, although the principles stated in the NDIS emphasize the importance of listening to people’s needs and recognizes their ability and right to choose, control, and take their own risks, the current structure appears to be somewhat restrictive with tools that do not ensure that the participant’s voices and points of view are necessarily taken into account. In this regard, prior to the implementation of the NDIS, the AGPC (2011a) stated,

There is currently no ideal tool to use in the NDIS, but governments should not delay implementation of the scheme in the absence of “perfect” tools. Accordingly, the NDIS would use the best available tools in its initial implementation phase, with the ongoing development of best practice approaches. Over the longer-term, the NDIS should oversee the development of its tools (and ideally hold copyright) since such tools effectively determine resource allocation and because the NDIS would have the best evidence for their ongoing development.

Thus, it is understandable that the tools used to assess people’s needs and goals are still inadequate. That being said, as the Productivity Commission implied, if Australia is truly determined to include people with disabilities in society under the NDIS, it remains crucial to pursue the development of tools that while still being individualized and centered on people’s specific needs and aspirations, take a more systematic and standardized approach to assessing participant’s needs and levels of funding required, and ensuring that their “voice is valued” (Thill, 2015). This will be especially important when it comes to identifying additional costs of living. For example, participants could be provided with a list of what additional costs might be involved for a given disability (including the social and economic barriers it can entail). An adequate tool would also take into account the ways in which participants are excluded from social participation according to different personal characteristics and contexts and according to their different goals and aspirations. Although adjusting to these future challenges will be crucial, we would once again argue that it does not change the fact that the needs assessment under the NDIS is not a deficit-based approach and that it involves participants in the decision-making process and takes into account their needs as well as their aspirations regarding social and economic participation and what barriers need to be addressed and overcome. As such, even though it remains to be seen to what degree this approach is fully achieved, the mechanisms of the policy indicate that active citizenship is its focal point.

Research Agenda Recommendations

Since the implementation of the NDIS’ large-scale trials in 2013, the National Institute of Labor Studies has been evaluating the impact of the scheme, with a focus on four aspects: how the scheme appears to be affecting people with disabilities and their careers, and its impact on the workforce, mainstream providers and services, and the wider community. The final report, published in 2018, is very insightful and constitutes a good starting point for future research. For example, “the qualitative evidence suggests that overall, the NDIS had increased choice and control for almost all respondents” (Mavromaras et al., 2018, p. 124) and that

“an overall increase in wellbeing was reported by NDIS participants. Many respondents described evidence of improved skills and developmental progress as a result of the NDIS. This included increased participation in social and recreational activities, being able to participate in activities that had hitherto been unavailable or inaccessible, and observable happiness in being able to be more active”. (Mavromaras et al., 2018, p. 164)

The authors conclude that overall, “the NDIS has been delivering the outcomes that it was designed to deliver” (Mavromaras et al., 2018, p. xiii). More importantly, however, the report outlines some major problems that need to be addressed. Quantitative data from the study show that one common barrier to social participation was that the desired activities, such as going on vacation, “cost too much.” Participants also mentioned building access, transport, safety, organizations, and timing as barriers to social participation as well as the fact that other people do not understand them. Qualitative data from in-depth interviews also revealed that the NDIS has had no impact on social participation for people with “mental health problems,” intellectual disabilities or autism spectrum disorder (Mavromaras et al., 2018, p. 181). Concerning employment, “a lack of opportunities, employer perceptions of people with disability, difficulties with transport or parking, difficulties using facilities or equipment, and a lack of schooling, training or experience” still appear to be the main barriers. The authors point out that despite the fact that the NDIS has been implemented relatively recently, there is “little evidence” that these barriers are being overcome with time (Mavromaras et al., 2018, p. 182). In light of these findings and the points discussed in this article, we believe there is still an important need for more research on the NDIS and its impact on social participation of people with disabilities and their careers. Particularly, the mechanisms of the NDIS and the ways in which they generate opportunities to take part in ordinary everyday life activities in society need to be taken into account and better measured. We recommend some key issues that we believe should be addressed by research on the NDIS: (a) how additional costs related to disability are taken into account and calculated by the scheme and the way in which this affects participants; (b) how (or if) the scheme affects social and economical participation on a longitudinal basis, for example, whether the allocated funds allow people to overcome social and economical barriers; (c) how the well-being of participants, their families, and caregivers is affected by the NDIS and how that compares with people with disabilities who have not been included in the scheme. Future research should also pay particular attention to groups that are typically more excluded from social participation.

Conclusion

This analysis of the NDIS has shown that it marks a shift from a liberal welfare state regime towards a social democratic welfare regime based on the principles of emancipating individuals from reliance on their family and work and encouraging active citizenship. This shift is also evident in the eligibility requirements that distinguish between clinical and non-clinical interventions and insist on supporting people whose impairment affect their “capacity for social and economic participation” (NDIS, 2016a) as well as in the needs assessment process which is based on making participants active subjects of their support and on contributing to the realization of their own goals and aspirations, supporting their capacity to “undertake activities that enable them to participate in the community and in employment” (NDIS, 2014a). By allowing participants to assume an active role in defining and shaping their support to suit their needs and aspirations, the scheme reproduces a view of people with disabilities as already capable of managing their lives while supporting them to increase their independence and take more control. For these reasons, it is also arguable that among the signatory states of the CRPD, Australia is probably best succeeding in achieving the Convention’s objectives, and in particular relating to active citizenship. Consequently, the NDIS will probably have an important influence on disability policy around the world, as well as on social policy in general and the development of welfare states. Not only is it important for policy-makers to take example on the way other policy’s mechanisms such as the NDIS’ extend active citizenship of people with disabilities, but also to learn from their shortfalls, mistakes, and risks. The case of the NDIS reminds us that transferring responsibility and blame to individuals is still an issue, but also of the importance of developing proper and systematic tools for evaluating people’s needs and aspirations. Finally, more problems and shortfalls, which will be important to monitor, will likely arise as the scheme continues to be implemented in Australia. Among other things, as illustrated by Mavromaras et al. (2018), many systemic barriers to social participation of people with disabilities remains unaffected by the NDIS. These barriers will ultimately require political interventions and public awareness campaigns.