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This suggests that such groups are more likely to have their care funds reclaimed by the NDIA, further entrenching inequitable divides. Along with thin markets, changes to competition in the NDIS markets also impact on choice and control by changing the dynamics between service providers and people with disability [ 24 ].

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While the main purpose of the NDIS is to change relationships between service providers and people with disability [ 71 ], this was specifically to give more empowerment to people with disability. Instead, through the marketisation of the NDIS, some service providers have reduced the flexibility and availability of care that they previously supplied. A participant in the trial evaluation observed that:. Service providers have also reported that they are less able to respond to crisis events in the general population, as the new structure of personalisation means that they cannot be paid to help someone unless that person has money in their plan for that specific service.

In a report on changes in the sector, this service provider explains:. As in the quote above, inflexibility of services and constricted availability of crisis support may be felt inequitably between participants of the NDIS, with people who are less able to secure a regular and flexible service provider missing out on crisis support and services specifically tailored to their needs, or potentially not able to qualify for the scheme at all. Participants vulnerable to this include people with complex mental illness and challenging behaviours. This is particularly the case should participants choose to self-manage their funding the highest form of choice and control.

Participants who self-manage take care of all administration related to their care and supports, rather than using a third party. This implies the need for participants or their nominees to have the skills and time to understand rules, intent, infrastructure and the operational details of the scheme.

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A recent transcript from a Senate inquiry into the scheme suggests that such skills do not always come easily to participants:. Having the skills to navigate the system appears to be mediated by a range of social factors, including cultural and language background, literacy level and level of complexity of need, with people who have compounding experiences of disadvantage or trauma often experiencing difficulty finding their way through systems [ 16 , 28 , 29 ].

For many of these groups, accessible information about systems is of critical importance, and the availability of such information has been recognised as a key component of consumer rights [ 40 ]. In particular, there are reports of the difficulties presented by information availability and frequent changes bureaucratic processes likely caused by pressure to roll-out the scheme quickly , which even sector staff may not always understand themselves.

Two parents of young children entering the NDIS for the first time noted this difficulty:. In addition to the complexity of information, specific implementation issues in the scheme have also affected the level of bureaucratic accessibility of the NDIS and capacity of participants to exercise choice and control. The lack of intuitiveness of the portal, requirement for internet access and digital literacy are some key problems, impacting particularly those for whom digital access is a challenge:.

A lack of availability of assistance from the NDIA with navigating the portal is also a reported issue that compounded this problem:.

I think if everyone was assigned to someone Bureaucratic accessibility problems means that many people have reported relying on personal networks and peer support systems to complement their understanding of the NDIS and receive information about the scheme from people they trust [ 29 , 54 , 66 ]. Others have emphasised the importance of being connected to good local service providers who can explain key details to them [ 66 ]. The challenge of these solutions in terms of the social determinants of health and for people from low socio-economic backgrounds is that they rely on a high level of social capital and access to effective service providers, and those who are socially isolated or otherwise disadvantaged may not have access to these forms of assistance.

Changes in the way that service provider staff are expected to work within the NDIS and in how they are paid and managed can also have flow on effects for scheme participants. In particular, constraints on and changes in the practices and operation of service providers have the potential to impact on choice and control for participants. The shift to individualised funding — while a fundamental tenant of personalisation policies — represents changes for care and support staff in how they are expected to operate.

One challenge in the scheme is in funding the training and wages needed to maintain high quality staff:.

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This will lead to [a] decrease in quality services provided to people with disability. While research into the transition to the NDIS suggests that some service providers are finding new ways to fund collaboration [ 54 ], it remains a challenge, with potential impacts on the quality of services provided to NDIS participants and hence on the level of choice and control they can enact.

Further, while choice and control are meant to sit with participants in the NDIS, due to the introduction of a service marketplace, service providers and individual workers also have greater capacity to determine which clients they are willing to work with. Reports indicate that some service providers are choosing only self-managed NDIS participants [ 24 , 59 ].

This disadvantages those unable to or do not want to self-manage their funding. Where there are more coordination costs and where service providers and workers may choose not to work with them, people with disability and complex needs may not have the same choices for services as their middle-class peers [ 29 ]. In this respect, the new context for service providers is another constraint on the operation of choice and control, which intersects with the social determinants of health for many people with disability.

While there is a growing body of work exploring how and why higher socio-economic groups derive greater benefit from government services [ 26 , 27 , 48 , 49 ], it has been ignored in the context of personalisation schemes. This is concerning on two levels. Firstly, personalisation is growing in the provision of social care in many countries and we currently do not know how it impacts inequality. As one of the most ambitious personalisation schemes in the world [ 43 ], the NDIS provides an important case through which to examine these issues. Our review of the existing empirical research and evaluations of the NDIS supports the argument that the structure of administrative systems within personalisation schemes favor those already equipped to deal with complex bureaucracy counter to the claims of choice, control and empowerment.

We find that the NDIS has a number of structural aspects that can result in inequitable access to the scheme or to care services, with flow on effects for choice and control, empowerment and health outcomes. This aligns with previous research. For example, Matthews and Hastings [ 48 , 49 ] argue that middle-class users are more favored in the design of public services because those designing and administering public services are also likely to be middle-class, resulting in services that match the values and norms of the middle-class.

In other words, services are created with a particular norm or ideal user in mind and these reflect the designers themselves. With regard to personalisation schemes, our findings suggest that such approaches have the potential to entrench existing inequalities. We found evidence of inequitable access occurring along the lines of gender [ 50 ], education [ 50 ] remoteness and rurality [ 43 , 50 , 73 , 74 ], socio-economic position [ 29 ] and disability type [ 36 , 50 ].

As presented in the findings, there are structural aspects of the delivery systems of personalisation schemes that favour users who have good literacy, speak English, hold low levels of trauma, trust systems, haves the time to manage their own funding and to research the choices available, or have a trusted person to do this for them, and so on. In other words, these are people who are likely to already be situated near the top end of the social gradient of health [ 47 ] and have high social capital. These attributes and social conditions can negatively interact with administrative systems for personalisation — highlighting the need for more consideration of social and health inequailities during design and implementation [ 10 ].

Olney and Dickinson note, administrative burden in personalisation is distributed unequally [ 63 ]. In the context of the NDIS, we found that this was likely to occur in four key areas: managing individual budgets, bureaucratic accessibility, service provision and market robustness.


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These are defining characteristics of personalisation schemes internationally [ 60 ], suggesting that such schemes have the potential to entrench and widen social inequalities by nature of their very design. While personalisation schemes such as the NDIS cannot necessarily redress existing inequities in the social determinants of health e. Given the focus on choice, control and empowerment, a well administered personalisation scheme with thorough supports could result in some levelling of the social gradient — enabling citizens to access services and supports that meet their needs without widening inequities.

This is not a fundamental flaw in personalisation itself, but rather something to consider in the design and delivery of personalisation schemes, which may or may not entrench inequities depending on how they are designed and administered. As a result, personalisation may not only entrench existing inequities, but widen them by allowing those higher on the social gradient to derive more benefit than those situated lower on the social gradient. Experiences of the NDIS suggest that this very possible.

Despite the considerable growth in personalisation schemes in disability and aged care internationally, to date little research has examined their effects on social inequalities. On the one hand, we might hypothesise that with their emphasis on choice, control and empowerment, personalisation schemes have the potential to address individual differences in social determinants to health, leading to greater equity. However, such schemes put unprecedented emphasis on individuals to advocate for their own rights and navigate burdensome administrative systems.

In examining one of the largest and most ambitious personalisation schemes in the world, the NDIS, we found evidence that the very design of these schemes can not only entrench existing inequalities in the social determinants of health but widen them. This is concerning given the international push towards personalisation in various areas of social care, with widespread implications for efforts to address the social gradient in health. More attention needs to be given to the administrative structures and systems through which personalisation schemes are delivered if we are to avoid increasing inequity.

Canberra: commonwealth government of Australia. Australian Productivity Commission.

enter Disability care and support: productivity commission inquiry report. Melbourne: Vic. Baum F. Cracking the nut of health equity: top down and bottom up pressure for action on the social determinants of health. Promot Educ. Bourdieu, P. A theory of practice. Cambridge Massachusetts. Bourdieu P. Distinction: a social Crtique of the judgement of taste. London: Routledge; Carey G, Crammond B.

J Epidemiol Community Health. Towards health equity: a framework for the application of proportionate universalism. Int J Equity Health. Carey G, Friel S. Understanding the role of public Administration in Implementing Action on the social determinants of health and health inequities.


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International Journal of Health Policy and Management. Carey G, Malbon E. Policy Design and Practice.