NEOLIBERALISM, INEQUALITY & THE NDIS - POLICY REVIEW

Whilst there has been notable development and growth of person-centred schemes in disability internationally, research assessing the effects on social inequalities from schemes like the National Disability Insurance Scheme (NDIS) is underwhelming. Taking a juxtaposed position, perhaps the prominence of choice, control and empowerment within the NDIS has the potential to dismantle individual variances in social detriments to their recovery, eventuating in a more equitable climate for those living with disability. The way in which the NDIS stands, however, puts unparalleled weight on individuals to advocate for their own rights and navigate complex systems of administration. By reviewing one of the most ambitious social policy schemes of Australia’s history, the NDIS, there is strong evidence that suggest that how it has been designed can not only reaffirm and imbed pre-existing inequities, but broaden them. This is alarming considering the push for person-centred care across many domains of social care in Australia with prevalent implications. This article argues that there needs to be more attention dedicated to the administrative processes and systems through which the NDIS operates on if we are to avoid growing inequalities within the disability sector. With this common theme throughout Australian literature, this article will discuss; a) NDIS Service Provision b) market robustness and our dependence on it c) individual budget management, and d) bureaucratic accessibility as some of the limitations of the NDIS how it now stands.

Person-Centred Care

A plethora of research into the social detriments of health has further recognised that the choice and control we have over our life are integral to positive health outcomes and valuable drivers of one’s recovery journey (WHO, 2008; Marmot, 1991; Marmot, 2010; Whitehead et al., 2016). This is inclusive of the choice and control we exercise over social and health services. There have been several public debates on consumer health that have echoed throughout social policy initiatives, with focus on consumer empowerment, choice and control being mirrored throughout decades of failed policy attempts to integrate person-centred approaches to social care.  A significant driver accelerating the goal of personalised care is the need to provide disability services which are tailored to a broad variety of cultural and social needs, and empower those with lived experience to actively exercise their choice and control about supports and services they receive (Spicker, 1994). Advocates debate that person-centred approaches such as this encourage empowerment of those with lived experience, often resulting in significantly more positive outcomes (Taylor, 1998). Resounding evidence on social detriments of health argue that by maximising consumer choice and control in their lives, including care and services, often results in optimised health outcomes (Marmot, 2010). Meagher & Goodwin (2015) capture the relationship amongst empowerment, choice and control in their commentary of consumers as active participants that are encouraged to exercise autonomy in their social, personal, and political climates, and that choice is a vehicle in which individuals can enact self-determination and agency in their recovery. Translating this commentary into the concept of person-centred care, facilitating choice of individuals is a way of upkeeping and expressing autonomy, identity and dignity. Self-determination, on the other hand, is the control individuals have over ones goals, and choice is a major asset that facilitates this. Arguably, person-centred social care schemes are the end-product of decades of debates advocating for agency and autonomy in care systems. Person-centred schemes empower consumers to actively participate in decisions about what will best support their needs and fit their life. In many domains of social care, most notably in aged-care and disability settings, person-centred schemes have emerged (UK, Germany, and Australia) (Needham & Glasby, 2014; Junne, 2018; Needham & Dickinson, 2017). This movement to personalisation has gradually built momentum from growing demands of communities for choice and empowerment, alongside the development of market mechanisms and delivery of services funded by the government (LeGrand & Bartlett, 1993).  For the Australian government, the introduction of markets were advocated for based upon gains of efficiency (LeGrand & Bartlett, 1993). For the purpose of this paper, Australia’s experience of person-centred social care, the National Disability Insurance Scheme (NDIS), will be at the forefront of discussion.

National Disability Insurance Scheme (NDIS) Act

Arguably, Australia’s most extensive venture into person-centred social care has been the NDIS. As with all person-centred schemes, choice and control are anchoring components of the NDIS. These two assets serve as a foundation on which Australia’s grassroot advocates supported and the features that ultimately gained resounding political backing for the scheme (Thill, 2015). Furthermore, these two components are core objectives of the NDIS Act (Commonwealth of Australia, 2013), to engage those living with a disability to enact choice and control in the effort of effectively planning delivering their supports, and actively achieving their goals. The reform transformed several elements of Australia’s disability care system, not excluding equity of access, disability care market and systems of accountability (Carey et al 2017). The NDIS enwraps an innovative arrangement for financing disability care for Australian consumers living with a significant or permanent disability, grounded by key principles of person-centred care and individualised budgets. The roll-out of the NDIS started as a collection of trials (2013) and was nationalised in 2017. From a structural lens, funds in exchange for care/support are distributed to consumers individually on the basis of their support needs. Each consumer is allocated with their own individualised budget in order to purchase supports of services from NDIS registered providers (Australian Productivity Commission, 2013). Consumers individualised budgets, as well as the variety of supports it can fund, is co-designed each year with an NDIS planner, the consumer living with a disability, and a supporting advocate as chosen by the consumer (Australian Productivity Commission, 2013). Developing research suggests that consumers experience of choice and control within the NDIS is largely influenced by their socio-economic context. A large portion of this paper, therefore, will be dedicated to exploring the relationship between person-centred care and inequity within the context of the NDIS. From an intersectional lens, the cross-of NDIS systems and diversity of individual circumstances can either enable or debilitate choice and control.

Access to NDIS Market

A report published by Carey et al (2017) assessed the make-up of the NDIS, proposing that the variances in access to market, remote location, gender, age and type of disability are all components that are likely to produce an inequitable roll-out of the scheme. Additionally, a selection of candid interviews focussed on consumer experience in Western Australia (WA) emphasised that there is nothing automatic about the NDIS that enables strengthened choice and control (Laragy et al, 2015). Furthermore, the report shed-light to an issue of people’s circumstances largely constraining or facilitating consumers capacity to enact choice. Laragy et al (2015) add to their argument for consumers needing more information and resources to make thought-out and well-informed decisions; supportive and inventive support services from professionals (social workers, support workers); and a community that welcomed an eagerness to learn. These suggestions came from a underlying barrier of how individualised funding packages brought neither more opportunities for control or choice automatically, there needed to be safeguards in place to optimise consumers abilities to exercise both choice and control. This critique is mirrored in Meltzer et al (2016) study specialising in early-childhood intervention strategies within the Hunter and New England region (NSW) as well as Warr et al (2017a; 2017b) report into consumer experiences of the NDIS. Warr at al (2017a; 2017b) argue that household structure, household income and education are additional driving forces for inequity, and are critical in filtering consumers prospects and capabilities as well as what choice and control carers have in accessing resources and services under there NDIS.

NDIS Market Robustness

The way in which the NDIS is currently structured, as a person-centred scheme, means consumer choice and control is largely dependent on how robust our market is (Commonwealth of Australia, 2013). Without the presence of an effective and purposeful market, several service providers are not accessible for consumers to select from. Ultimately, the success of Australia’s NDIS is entirely dependent on consumers ability to exercise agency in their choice of care services (Commonwealth of Australia, 2013). For this to occur, however, it is necessary for there to be a strong selection of reliable and quality services contributing to our market. Equally, consumers need to feel empowered to exercise their voice and make the necessary changes when service providers are either inadequate or are not contributing value to consumers recovery (Needham, 2010). As has been echoed through international attempts of person-centred care, often a trademark of dysfunction or poorly-operating social care scheme is a thin market. This is a product of there being limited service providers in a local area, or not enough services to accommodate local consumers.  This is also referred to as a market gap or market failure by academics. Since its implementation there has been an acute awareness of the issue of thin markets, and it is progressively recognised as an unrelenting problem (Carey et al, 2017). Similar to several restraints to choice and control, this is a concerning structural defect that is felt unevenly across all domains of the NDIS. Remote or rural areas, for example, are likely to be at threat of thinning markets as a result of vast distances between service providers and consumers. Adding to the disadvantage of consumers currently experiencing thin markets, restrictions of spending in the NDIS often has an additional consequence of unspent money by consumers being reclaimed by the National Disability Insurance Agency (NDIA). As explained by the Joint Standing Committee (2018) “You didn’t use X amount of dollars in your plan, so therefore you lost it’. There are no safeguards in place, however, to monitor two integral factors that are contributing to on-mass underspending of NDIS packages in rural areas. Firstly, whether inactive consumers have been on a waitlist and thus unable to access services to support their recovery. Secondly, taking the right measures to assure that consumers will retain appropriate funding in the hope those services become available. In addition to thin markets, ever-changing dynamics to competitive elements of the NDIS markets largely influences consumers choice and control by shifting the relationship between services and those living with a disability (Green et al, 2018). Whilst a key purpose of the NDIS is to redevelop the dynamics between consumers and service providers (Thill, 2015) this was specifically designed for consumers to regain empowerment. This had a juxtaposed effect, however, with several services reducing the availability and flexibility of their programs what were supplied previously. Organisations have voiced that crisis responses are significantly restrained for the general population as the current person-centred scheme means that programs cannot provide necessary support unless consumers have sufficient funds in their plan. Consumers vulnerable to this issue are people with challenging or unpredictable behaviours.

Bureaucratic Accessibility

An additional component impacting on consumers choice and control is the levels of understanding or knowledge about the NDIS and its navigation, particularly towards it bureaucratic accessibility. This concern is more pertinent when discussing consumers who have elected to self-manage – a way in which the highest form of choice and control can be exercised. Consumers (and their carer/s) who elect to self-manage their plans are responsible, rather than a third party, for handling the administration of their chosen supports. If a consumer were to chose to engage a third party to assist with the coordination of their plan, however, the consumer (and carer/s) is still expected to have a sound understanding of the details of the NDIS and how it is administrated. This includes the use of NDIS resources, processes of planning, and engagement of services in order to optimise the value of their decisions. This infers the necessary skills and time of consumers (and their carer/s) to appropriately conceptualise the operational factors, infrastructure, rules and purpose of the NDIS. The ability to navigate the complexity of the scheme, however, is mediated by a myriad of social factors such as levels of literacy, culturally and linguistically diverse backgrounds, and levels of complexity of consumer needs (Hui et al, 2018). For several of these disadvantaged groups, it is integral that there is easy access to information about systems. Maker et al (2018) recognises the availability of resources as a core factor of consumer rights. Bureaucratic accessibility issues often mean that consumers are depending on peer networks or personal supports to counterpart their conceptualisation of the NDIS and access information on the scheme from those who they trust (Purcal et al, 2018). Other research confirms the positive impact of being linked to helpful local services who can dismantle intricate details of the scheme. A difficult challenge that remains with these solutions, particularly towards social detriments of health and low-socio-economic backgrounds, is the reliance on access to effective services and higher-levels of social capital. Consumers that are either socially isolated or disadvantaged in other ways may not necessarily be able to reach these forms of support. The challenges for accessibility and the bureaucratic nature of the NDIS, therefore, means that consumer choice and control is restrained for those who don’t have the necessary resources to navigate the complexity of the scheme or those who are socially isolated.

Operational Change and Constraints of Services

A shift of expectations of how service provider staff work, are paid and managed has occurred since the implementation of the NDIS has echoed into the consumer experience, particularly towards practices and how services operate. Constraints on service operation and practices mean that the choice and control of consumers is at risk of being limited, for consumers with complex needs/ behaviours or social detriments of health this is particularly pertinent. The implementation of the NDIS meant a gradual transition to individualised funding (a core element of person-centred policies), which represented a dramatic operational change in support staff and care.  A potent challenge towards the NDIS is in funding the necessary training and salaries to upkeep well-skilled and qualified staff. Cortis et al (2017) sheds light on how service providers are having to employ their staff on lower wages as a result of low prices of the NDIS, making attracting and keeping well-trained and quality staff a growing concern. Ultimately, long term consequences of this will mean that staff will receive less training at the disadvantage of those living with a disability, which will lead to an overall decrease of quality services available to consumers. While academic cometary about the roll-out of the scheme highlights that several organisations and service providers are seeking new methods to fund collaboration (Meltzer et al, 2016), it remains a complex challenge for most. This is partly due to organisations being wary of risking the quality of NDIS programs, and hence the extent of choice and control consumers enact. According to Collings et al (2015) consumers who are living with complex support needs or coexisting compounding barriers impacting social determinants of health may choose to access a large selection of services to assist with their recovery and may need more coordination as result. The challenge of this runs the risk of unfairly affecting consumers that find themselves in this category and limit agency in their decisions.

Reaffirming pre-existing inequalities

Particularly in regard to person-centred schemes, several critics argue that schemes such as the NDIS run at risk of potentially reaffirming pre-existing inequalities. The is evidence suggesting challenges in accessing services based on gender (Mavromaras et al, 2018), socio-economic position (Hui et al, 2018), education (Mavromaras et al, 2018), disability type (Lakhani et al, 2018) and rurality (Malbon et al, 2017). As discussed previously, there are overt structural defects of the operational aspects of the NDIS that largely favour consumers who are hold low levels of trauma, high levels of literacy, have a strong understanding of the English language, trust systems, and has sufficient time to self-manage their own plans or resources to investigate services accessible, or a carer to do on their behalf. As discussed by Marmot et al (2016), there are people who are already situated at the upper spectrum of the social gradient of health that may have more resourced social capital. These social conditions and assets can have a damaging interaction with administration systems for person-centred care. This highlights the demand for more concentrated attention towards health, social and systematic inequalities during design, review, and implementation processes (Carey et al, 2015). As noted by Olney & Dickinson (2019), the burden of administration in person-centred schemes is unfairly distributed amongst consumers, carers and workers. Within the Australian context, however, the risk of inequitable distribution of administration is likely to appear in four domains: the management of individual budgets, provision of services, bureaucratic accessibility of services, and the sturdiness of the market. These characteristics of person-centred schemes have been echoed internationally (Needham et al, 2014) signifying that the NDIS holds the risk of entrenching or broadening societal inequities by its design nature. In spite of attempts to optimise consumer choice and control, the NDIS can nevertheless remain fixed and inflexible to the support needs and conditions of each individual. Whilst person-centred schemes like the NDIS cannot eliminate present social detriments of health that pre-date the schemes existence, an asset to its purpose should be to deliver further supports to disadvantaged consumers rather than widen these inequalities. With the emphasis being on choice, control and empowerment, a future goal of the NDIS should be to achieve a well-managed and directed person-centred scheme that provides thorough supports to streamline the social gradient in the disability sector – facilitating consumers to access tailored supports and services that meet the needs of their unique needs without escalating inequalities. Future reviews of the NDIS, however, should encourage its development from an idyllic median in mind, which is not fixated on differences throughout the Australian population. Whilst it cannot be said that this is a central failing in person-centredness, it is something that should be considered in the review, design, repair and operation of the NDIS, which has the potential to engrain inequalities based upon how it operates and is administrated. As a result, the NDIS is at risk of not only engraining inequalities, but broadening them by enabling people sitting on higher on the spectrum of social gradient to gain more than others sitting lower on the spectrum. Consumer experiences of the NDIS indicate that this is an entirely plausible outcome without the necessary safeguards to support the scheme. Findings such as this carry wide-ranging implications for efforts to streamline the social gradient of health.

Conclusion

Notwithstanding the notable development and growth of person-centred schemes in disability internationally, research assessing the effects on social inequalities from schemes like the National Disability Insurance Scheme (NDIS) is underwhelming. Taking a juxtaposed position, perhaps the prominence of choice, control and empowerment within the NDIS has the potential to dismantle individual variances in social detriments to their recovery, eventuating in a more equitable climate for those living with disability. The way in which the NDIS stands, however, puts unparalleled weight on individuals to advocate for their own rights and navigate complex systems of administration. By reviewing one of the most ambitious social policy schemes of Australia’s history, the NDIS, there is strong evidence that suggest that how it has been designed can not only reaffirm and imbed pre-existing inequities, but broaden them. This is alarming considering the push for person-centred care across many domains of social care in Australia with prevalent implications. In sum, there needs to be more attention dedicated to the administrative processes and systems through which the NDIS operates on if we are to avoid growing inequalities within the disability sector.

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