In our thematic analysis, we establish that the NDIS systems intersect with individual circumstances to constrain or enable choice and control. Within this overall finding, we will discuss 1) individual budget management 2) dependence on market robustness, 3) bureaucratic accessibility, and 4) service provision. Prior to exploring these themes, we review the direct evidence that different groups are benefiting disproportionately from the scheme.
Our review revealed disproportionate benefits and difficulties for some groups accessing the scheme [29, 36, 37, 73, 74]. For example, the trial evaluation and other reports found that ‘vulnerable groups’ are less likely to receive funded supports than other NDIS participants with similar needs [50]. The evaluation details some of the conditions that can constrain opportunities for choice and control for personalisation scheme participants:
“Those more vulnerable to poorer outcomes included participants with intellectual disability and/or complex needs; from CALD [culturally and linguistically diverse background] communities; those experiencing mental health, substance abuse, or forensic issues; and older carers who were socially isolated and had their own health issues. These vulnerable groups were considered to receive less funded supports in their NDIS plans than others with similar support needs and to struggle with NDIS processes” [50].
Further to the explicit identification of ‘vulnerable groups’, the evaluation of trials also identified groups that benefit most from the NDIS, [50]. Though precise figures were not provided, the following quote identifies that males and people with higher income are more likely to find a service provider to fulfil their care requirements:
“ … male participants and those with a higher household income were shown to be less likely to experience unmet demand for supports” [50].
An assessment of the design of the NDIS [8] proposed that differences in disability type, remoteness of living, age, gender and access to market are all likely to result in inequitable uptake of the scheme. Similarly, a series of in-depth interviews about the NDIS in Western Australia highlighted that there is nothing ‘automatic’ about a personalisation scheme that leads to greater choice and control [37]. They highlight that people’s circumstances enabled or constrained their ability to act on choice:
“individualised funding packages did not automatically result in more choice and greater opportunities. People needed information to make informed decisions; supportive and creative support from social workers and other professionals; and welcoming communities” [37].
This finding is echoed in Meltzer et al.’s [54] report into early childhood interventions in the Hunter region, and also noted by a recent study into the experiences of the NDIS by participants [73, 74]:
“Factors that are well-recognised in driving inequality – household income, education, residential location and household structure – remain critical in filtering opportunities and capacities for service users and their carers to have choice and control in accessing services and resources under the NDIS” [73, 74].
Individual budget management by participants
Each NDIS participant has their own individualised budget, and these can be administered by the participant (‘self-managed’), chosen by the participant but administrated through a plan manager who pays invoices on behalf of the participant (‘plan-managed’), NDIA managed, or a combination of these. Self-managed participants make up 7% of NDIS participants [58]. Self-managed participants carry a higher administrative burden themselves [73, 74], however, they are more straightforward clients for service providers, as they pay the service provider directly without the service provider dealing with the NDIA and allowing service providers to negotiate their own prices [59]. This means that self-managed participants are most able to negotiate for more tailored, boutique services and innovations:
“We now only work with self-managing and plan-managing participants and charge our own rate (not the NDIA rate)” [59].
However, the people most able to self-manage are likely to be advantaged in other ways, and theory tells us, are more likely to be upper or middle class users [48, 49]. Concerningly, research on people with intellectual disabilities in the scheme found that up to 40% of participants believe they require further training to fulfil the administrative tasks of the NDIS, including looking after money, working on computers, finding the right service for the right price, talking and writing, planning time, making choices and being heard [36].
Inequities are also apparent at the point of the planning meeting, where the individual budget is decided upon. The early stages of the NDIS have been characterised by inconsistencies in individual budgets between people with similar needs, who might be expected to receive similar sized care packages [64, 65]. As an example of what this looks like, the parent of a child in the NDIS early intervention trial observed that:
“Apparently my plan should only be about $12,000... That’s completely generous apparently, the $12,000. I am getting $18,500” [50].
The NDIA has observed these inconsistencies in their annual reports, and claim that variability in NDIA planners is a reason for this:
“There is greater than expected variability in package costs for participants with similar conditions and levels of function (suggesting inconsistencies in planners’ decisions)” [64, 65].
However, inconsistencies between individual planners are not the entire story when it comes to differences in individual budget management. The NDIS trial evaluation [50] and report by Warr, Dickinson, Olney, Karanikolas, Kasidis, Katsikis, and Wilcox [73, 74] both provide compelling evidence to suggest that participants with stronger supports around them during plan negotiation may have plan budgets that are larger than others who are less enabled or practiced at negotiation. A service provider explains the difference that a knowledgeable advocate can make in the planning meeting:
“We had a carer come in whose wife had younger onset dementia … his wife’s initial plan was $700. Their second plan was $600, and when they had a review of the plan with the assistance of a key worker they were able to get nine hours of home care and a week of full respite with 24/7 care. That jumped to $32,000. I think that is a real great snapshot of the difference of having someone to come in, advocate and really also prepare the person for their meeting” [50].
As advocacy is not funded in the NDIS, it often falls to families to use their own skills be advocates or resources to fund advocates, leading to potential inequities in access to advocacy services:
“The NDIS was considered to work best for participants and families who were able to strongly advocate for themselves. In order to ensure equitable access to funding for all participants, the importance of advocacy (either formal or informal) was highlighted. Concerns were raised, however, about a lack of funding for formal advocacy support under the NDIS” [50].
Warr et al. [73, 74] explains how middle-class participants and family members can negotiate the planning process with greater ease:
“Participants and parents who could draw on professional experience which gave them an understanding of the logics of meetings, preparing funding requests and liaising with professionals, appeared to be more confident and assertive in their interactions in planning processes, compared to participants who had previously had limited exposure to these kinds of processes.”
Dependence on market robustness
The structure of the NDIS as a personalisation scheme means that choice and control of services is dependent on market robustness [3]. Without a well-functioning market, multiple providers are not available for participants to choose from. The success of the NDIS relies upon participants being able to exercise choice and control in the selection of their care services [3] and for this to occur there needs to be multiple and good quality suppliers in the market, and participants also have to be empowered to make choices and change when providers are inadequate or undesirable [61].
A hallmark of a poorly functioning personalisation market is a ‘thin market’, which occurs when there are zero or very few providers of a certain service in a local area, or if the available service providers are full and cannot take on more participants [7]. This might also be referred to as a market failure or a market gap. Awareness of the problem of thin markets in the NDIS has been present since the early days of implementation [7, 56] and is increasingly seen as a pressing problem [8]. Like many constraints to choice and control, this is a structural problem which is felt unevenly or inequitably across the population of individuals with access to the NDIS. For example, remote and regional areas may be more prone to thin markets due to the potentially vast distances between participants and providers. Or, some particular services, like those that service people with psycho-social disability and/or challenging behaviours, may be under serviced due to the difficulties present in providing those services.
Further entrenching disadvantage for people who experience thin markets, spending restrictions in the NDIS means that money in NDIS plans that is unspent by participants may be reclaimed by the NDIS:
“Currently, the status quo is that … ‘You didn’t use X amount of dollars in your plan, so therefore you lose it,’ and no-one’s (a) monitoring the fact that they couldn’t access services and they’ve been sitting on a waiting list for two years of their plan or (b) taking any steps to help that participant to retain that funding in the hope that, as they move forward, those services may become available” [30].
The evaluations of trial sites found that the people least likely to find providers for their care are women, non-men and people with lower education levels [50]. 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]. 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:
“I noticed quite a shift in service providers attitudes that bothers me, that the service providers, even ones that we’ve dealt with for quite a time, who were very flexible and very helpful, and really treated us as part of the family... they’re so fed up with it that they really are getting like ‘No I won’t, not unless they pay’” [50].
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:
“At the moment, someone rings us on a Friday afternoon and says they’ve got a crisis for a client we’re at liberty to say no dollars, no interest, aren’t we?... if they’re not our clients we haven’t got their package, we haven’t got any hours of coordination for them …. Under the old system if we get phone calls from the police and say ‘so and so’ was found wandering the street, can we do something? You know we’d send one our case managers out, we might do all sorts of things, but that was just because we were funded to do this sort of stuff across the community. But under the new model if we ain’t got an hour of coordination for a person I can’t allocate an hour staff time” [24].
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.
Bureaucratic accessibility
A further factor influencing individuals’ choice and control is levels of knowledge and understanding about navigating the NDIS, it’s bureaucratic accessibility. 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. However, even when a third party is used in the coordination of their plan, participants are required to understand the details of the scheme’s administration – including the planning process, offer and take up of services, and use of scheme resources, such as a complex online NDIS payment portal – in order to make the most of their decisions and choices about their care. 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.
A recent transcript from a Senate inquiry into the scheme suggests that such skills do not always come easily to participants:
“I think it’s worth noting that the ability of people to get the outcome that they want really depends on their skills in navigating bureaucracy and being able to do those wily things. In which case, we’re likely to see these kind of stratified outcomes from the scheme depending on what kinds of skills people have” [30].
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].
While the NDIS does have some accessible (or ‘Easy Read’/‘Easy English’) information available, there are still reports of the system being difficult to understand and navigate, including those who describe it as “protracted, unpredictable and intensive” especially for people with complex needs [16]. 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:
“What worries me is how it’s constantly changing all the time ... it’s one thing today and then tomorrow might be something different” [66].
“Every time I have called the NDIA and spoken to health professionals about it, I get a different story. No one seems to know what is going on, and I keep getting palmed about and not receiving callbacks as promised by NDIA” [66].
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 NDIS online portal to view and access details about one’s plan and funding expenditure has been a key issue [1, 2]. 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:
“Issues with the portal were particularly prevalent in low-income households and we spoke to many participants, particularly those with cognitive disabilities and older parent-carers, who had limited or no access to mobile phones, other devices or the internet” [73, 74].
Further, there was also a collapse of the technical infrastructure of the portal, which caused it to be ‘down’ for a period of time, preventing access and confusing scheme participants. A lack of availability of assistance from the NDIA with navigating the portal is also a reported issue that compounded this problem:
“I’d keep ringing [the NDIA] yet was shoved around from this person to that person. ... I think if everyone was assigned to someone... and you can ring them and they have the ability to help you directly” [66].
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. Thus, the bureaucratic nature of the scheme and challenges for accessibility – including the dependence of help on one’s own networks – means that choice and control may be limited for those who are socially isolated or lack skills and resources to navigate complex service systems.
Service provision
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. This is especially the case for those with complex needs and/or those who experience barriers in many intersecting social determinants of health.
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:
“Low NDIS prices are causing staff to be employed on lower wages, making it difficult to attract and retain quality staff. This will lead to [a] decrease in quality services provided to people with disability. Staff will receive less training to the detriment [of] people with disability” [18].
Other challenges are having enough funded hours within an individualised funding packages to facilitate high quality and coordinated service provision, such as spending time getting to know participants and/or collaborating with other service providers who may also be working with a participant:
“Whereas previously there’s been a lot of time to work with people in a more person-centred way, get to really know them, what their goals are, how we’re going to help them, and support them to achieve those goals. … (Now) (t) here are a lot of participants out there that you feel really concerned about because their family may not have capacity to provide for their disability support needs, and you’re working [in] a really complex system I suppose where there’s lots of different isolated systems, trying to work together to support somebody and it doesn’t always work very well.” [18].
“Prices do not account for what is required to deliver high quality services, and arrangements are not fully enabling disability support workers to deliver services which are personalised, co-ordinated, responsive or safe. Quality is likely to diminish in the process of NDIS expansion” [18].
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. As participants who experience complex support needs and/or many compounding barriers in terms of social determinants of health typically access more services and may need more coordination among the variety of service providers who assist them (Collings et al., 2015), this challenge has the potential to disproportionately affect this group and constrain their choice more than their middle class peers, who may not have as many service providers in their lives.
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. In addition, some individual workers may be reluctant to work with the most complex clients, which can affect those clients’ capacity to enact choice and control between services, even if they have funding available:
“People talk about us having choice and control but … They’ve got individual workers saying, ‘No, I don’t like that client, that client’s got behavioural problems, I’m not working with them’. So they’ve got individual workers that are now picking and choosing their clients. So you’ve got clients with the most complex needs … they can’t find support workers …” [73, 74].
The impact of these changes – what some have called the “Uberisation of the sector” [73, 74] – is that scheme participants with the most complex needs may be disadvantaged in enacting choice and control. 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.