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Disability & Society

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Hard-to-reach: the NDIS, disability, and socio- economic disadvantage

Corinne Cortese, Freda Truscott, Mona Nikidehaghani & Sandra Chapple

To cite this article: Corinne Cortese, Freda Truscott, Mona Nikidehaghani & Sandra Chapple (2021) Hard-to-reach: the NDIS, disability, and socio-economic disadvantage, Disability & Society, 36:6, 883-903, DOI: 10.1080/09687599.2020.1782173

To link to this article: https://doi.org/10.1080/09687599.2020.1782173

Published online: 18 Jun 2020.

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Hard-to-reach: the NDIS, disability, and socio-economic disadvantage

Corinne Cortese, Freda Truscott, Mona Nikidehaghani and Sandra Chapple

Faculty of Business, School of Accounting, Economics and Finance, University of Wollongong, Wollongong, Australia

ABSTRACT This paper examines the experiences of a small group of socio-economically disadvantaged people and their attempts to access disability welfare under Australia’s National Disability Insurance Scheme (NDIS). We interviewed 32 indi- viduals with some form of disability who were potentially eli- gible to apply for the NDIS. Our research revealed that only a small proportion of a sample successfully applied to the NDIS, with our interviewees characterised as ‘hard-to-reach’ because of their socio-economic disadvantage, social isola- tion, and lack of adequate support. Reflecting on the many and varied experiences of this group, we consider our inter- viewees to be at risk of further marginalisation in the absence of effective measures to engage and support them. We recommend ways to bring the hard-to-reach group within the ambit of the NDIS, as well as possibilities for future research.

ARTICLE HISTORY Received 17 June 2019 Accepted 1 June 2020

KEYWORDS National Disability Insurance Scheme; disability; choice and control; disability service provision

Points of interest

� This article reports on the experiences of people who have attempted to engage with Australia’s national disability support scheme.

� Only a few people within our sample had successfully applied for sup- port under the national scheme, with others either unaware of it or unsuccessful in their applications

� Many in our sample were effectively excluded from the scheme due to the complexities of disability, social exclusion, and financial hardship.

� Further research in this area is critical so that the problems faced by people in the hard-to-reach group, with respect to accessing the national disability support scheme, can be addressed.

CONTACT Corinne Cortese [email protected] � 2020 Informa UK Limited, trading as Taylor & Francis Group

DISABILITY & SOCIETY 2021, VOL. 36, NO. 6, 883–903 https://doi.org/10.1080/09687599.2020.1782173

1. Introduction

In 2013 the Federal Government launched the National Disability Insurance Scheme (NDIS or the Scheme) in Australia through the National Disability Insurance Scheme Act (Australian Government 2013). This legislation reflected the first legislative reform in disability service provision in Australia since the Disability Services Act of 1986 (Australian Government 1986). The NDIS was premised on the concept of providing people with a disability, and their families and carers, with ‘choice and control’ over the selection and delivery of the support services necessary for them to participate meaningfully in society (NDIS. 2020b, 3). This model of individual ‘choice and control’ was a departure from the previous block- or service-focused funding model. The National Disability Insurance Agency (NDIA), an independent Commonwealth entity, was charged with responsibility for ‘implementing the NDIS’ (NDIA 2017, 16). After a trial period of three years from 2013, the NDIS was rolled out nationally, in stages, from 1 July 2016 (NDIA 2017; Lakhani, McDonald, and Zeeman 2018).

The initial aim of our study was to examine the NDIS experiences of peo- ple with a disability in the Wollongong region of NSW, with a particular focus on people who experience some form of socio-economic disadvantage. Given that our interviews were conducted early in the life of the NDIS, our study was exploratory in nature. We conducted interviews with 32 people, whose names were drawn from the database of the St Vincent de Paul Society (SVDP). SVDP is a lay Catholic charitable organisation (St Vincent de Paul Society 2020). It provides a range of support services to people experi- encing some form of disadvantage. Its programs are designed to promote social justice and raise awareness about the causes of poverty and inequality. Our interviewees were recipients of the Disability Support Pension, an Australian welfare scheme that existed prior to the NDIS, which provides financial assistance to those unable to work due to permanent physical, intellectual, or psychiatric condition (Services Australia 2020), and therefore potential candidates for the NDIS. At an early stage in our interview process we determined that within this group of people awareness of the NDIS was partial, and engagement with the NDIS was limited at best. Rather, we encountered a number of people who appeared to be living on the fringes of society, often with a range of psycho-social disabilities, and who did not have the necessary skills and support mechanisms to access appropriate services. These psycho-social disabilities extend beyond mental health condi- tions and relate more broadly to social consequences of disability (Mental Health Australia 2020). Psycho-social disabilities have been identified by the United Nations Convention on the Rights of Persons with Disabilities as an impediment to sufferers’ capacity to function effectively, think clearly, and make appropriate decisions about the social and emotional aspects of their

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lives (Mental Health Australia 2020). Oftentimes, it appeared that for many of our interviewees the notion of ‘choice and control’ over matters related to managing their disabilities was simply outside of their day-to-day considera- tions. Instead, many of our interviewees were concerned with basic needs such as of food, accommodation, safety, electricity bills, social inclusion, medicine and transport. In many instances, the idea of reaching for anything beyond day-to-day survival did not even occur to them.

As such, rather than focussing on the experiences of NDIS participants, our study moved to consideration of those people who fell outside of the NDIS net. Our paper identifies the circumstances and needs of these ‘hard- to-reach’ people, and offers commentary on the impediments to legitimate participation in the NDIS. Interestingly, impediments to access have been acknowledged by the NDIA (2017) who notes that, so far, raising awareness and knowledge in the community has been one area that has been challeng- ing. Its attempts at ‘outreach’ via online platforms seem nonsensical in the context of people who have neither the means nor the skills to be online. Our initial findings were published in a report in 2018 (Hui et al. 2018), and are explored further in this paper. We argue that those who are already “hard-to-reach” (NDIA 2017, 59) because of social, health, welfare and finan- cial circumstances, are at risk of becoming further disadvantaged due to their limited ability to become informed of, and apply for participation in, the NDIS. We frame our considerations in the context of a ‘wicked problem’

(Head 2008; Rittel and Webber 1973); the problems faced by our group of interviewees, and others like them, are “systemic and interlinked” (Head 2019, 182). The NDIS is intended to support people with disability, though to do so it requires that people have the capacity to engage with the Scheme. If that is not the case, then the meaningful change that the NDIS promises is simply unachievable. For a cohort already marginalised, their problems become worse: disability goes unchecked, health conditions do not improve, living standards continue to be sub-standard, inequality prevails, and partici- pation in social, educational, and work life remains unattainable, or at least difficult. We witnessed all of this during our interviews, where we obtained a micro-insight into a very real problem. Clearly, there is a significant need for further research into this particular group, and their participation or other- wise in the NDIS.

2. Literature review

Since the 1970s, there has been an international trend towards the concept of individual funding for disability services (Purcal, Fisher, and Laragy 2014). For example, the USA, some Canadian provinces, and the UK have intro- duced individual funding models to improve individual independence and

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provide people with greater choice over the disability-related services they access (Spalding, Watkins, and Williams 2006; Mahoney et al. 2007). Similarly, some European countries, such as Belgium, France, Netherlands, and Sweden, have introduced individual funding schemes through the implementation of disability legislation that enables the purchase of dis- ability services from the open market (Laragy 2010). While the structure of individual funding policy varies across countries, choice and control remain a core elements (Williams 2009). Fundamentally, the assumption underlying these individualised funding models is that enabling individuals to decide how to spend the allocated funding should “enhance control, choice and flexibility” (Dickinson, Needham, and Sullivan 2014, 418). This assumption has underpinned the development of the NDIS in Australia, which specifies that ‘control’ means having the ability to self-direct, that is having control “over your supports and how they are provided” (NDIS. 2020a, 1). Closely linked is the concept of choice, which is enabled when the NDIS participant can choose a particular provider to deliver the disability-related services that they need (NDIS. 2020a).

The introduction of the NDIS in Australia signals the most significant social policy reform for people with disabilities in over three decades (Kendrick, Ward, and Chenoweth 2017). Emerging research on the impact of the NDIS on the lives of people with disabilities reveals the challenges faced by peo- ple attempting to access the NDIS. Warr et al. (2017) reported a lack of resources available to support people with disabilities when trying to navi- gate the various NDIS systems. Their study revealed that research partici- pants were concerned with the inconsistent information about the NDIS and the complexity of the administrative requirements, which effectively made the scheme difficult to understand. They also noted that the heavily mar- keted ‘choice and control’ benefits of the NDIS may be unachievable for peo- ple with disabilities living in regional and remote areas because of an absence of service providers.

Other studies have demonstrated a lack of knowledge and understanding of the NDIS among people with disabilities and their carers. For instance, Howard et al. (2015) analysed the experiences of parents and carers of chil- dren with disabilities in the Hunter region of New South Wales. That study revealed that, despite the media promotion of, and public information about, the NDIS, many parents and carers of children with disabilities had limited knowledge about the Scheme and were uncertain about how the changes could potentially affect their children’s support (Howard et al. 2015). Similarly, Lakhani, McDonald, and Zeeman (2018) investigation showed that people with disabilities, living in the southern district of South-East Queensland, had limited knowledge and understanding of the Scheme and were confused about the potential impacts of it.

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Scholars and practitioners have also raised concerns about the potential exclusion of certain groups of people from, or difficulty in accessing, the Scheme. Bigby (2014) drew attention to the problems faced by people with an intellectual disability who are expected to make up 60-70% of all NDIS participants (Cairns and Walsh cited in Bigby 2014, 94). She pointed to the impairment specific issues of this group, such as difficulty around articulat- ing particular needs, support required to enable choice and control, and a lack of someone in their life to “prosecute their interests” (Bigby 2014, 94). She highlights that, compared with those with a physical or sensory disabil- ity, it is difficult for those with an intellectual disability to have their voices heard through the usual channels, such as submissions to enquiries or access to parliamentarians or NDIS board members. Collings, Dew, and Dowse (2016) concurred, arguing that people with intellectual disabilities and complex support needs may be unable to adequately articulate their goals and aspirations, and may be disadvantaged in both application and planning stages of the NDIS process. O’Connor (2014) and Clift (2014) were also concerned about the marginalisation of people with intellectual dis- abilities, in particular, those who are from the low socio-economic back- grounds, or who are homeless or involved in the criminal justice system. Likewise, Soldatic et al. (2014) questioned the capacity of the NDIS to rec- ognise the needs of people with intellectual disabilities who experience social disadvantage, especially those who are from cultural and linguistic- ally diverse (CALD) backgrounds and those who cycle in and out of the criminal justice system. Soldatic et al. (2014) noted that since the NDIS pla- ces the onus on the applicants to prove their eligibility, people with an intellectual disability within CALD communities, and who also have contact with the criminal justice system might be at risk of exclusion from the Scheme. For these groups, accessing the NDIS could be challenging, since they are unlikely to have the sociocultural literacy to self-advocate and interpret the administrative rules (Soldatic et al. 2014). Early evaluation of the NDIS by Mavromas, Moskos, and Mahuteau (2016) recognised that peo- ple who were unable to effectively advocate for themselves, particularly those with a psychosocial disability, were experiencing poor outcomes under the NDIS. Gilroy et al. (2018) and Stephens et al. (2014) acknowl- edged the challenges for people with disabilities living in remote Aboriginal and Torres Strait Islander Communities.

While the literature suggests that the NDIS may potentially exclude or hin- der people with disabilities, there is an absence of research that documents the experiences that socially and economically marginalised individuals have when interacting with the NDIS. To address this gap in the research, our paper contributes to the disability literature by examining the ways in which people with disabilities, who also suffer socio-economic marginalisation,

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interact with and experience the NDIS. In doing so, our study aims to valid- ate concerns regarding the potential exclusion of certain groups of people with disabilities. Ultimately, we reveal that people with disabilities from low socio-economic background are missing out on benefits potentially available to them under the NDIS.

We consider this ‘missing out’ in the context of a broader set of issues characterised as ‘wicked problems’ (Head 2008; Rittel and Webber 1973). Wicked problems are endemic to social policy initiatives such as the NDIS: they are complex, intractable, and typically involve a divergence of view- points (Head 2008, 2019; Head and Alford 2015; Rittel and Webber 1973). Wicked problems are entangled in wider social, cultural, and political issues (Rittel and Webber 1973; Raisio 2009; Head 2008) and require multidimen- sional, dynamic and sustained solutions (Rittel and Webber 1973). Commonly identified wicked problems include climate change, indigenous disadvantage, poverty, and inadequate housing (Head 2019). Often, solu- tions to wicked problems have other consequences which may bring to the surface additional issues deeply embedded in the structure of the initiative, leading to further wicked problems (Head and Alford 2015). The ‘formulation’ of wicked problems, from a policy perspective, is significant because it often involves a “choice of interpretation that is already linked to a preferred solution” (Blanco 1994, cited in McCall and Skrtic 2009), which is relevant to our particular study of marginalisation and NDIS policy roll out. The NDIS is promoted as a lifetime scheme that “invests” in people with disabilities (NDIA 2017, 3) to enable them to “build skills and capabil- ity that empowers them to participate in the community and employment” (NDIA 2017, 3). In the formulation of the problem of disability, therefore, we argue that the preferred solution is linked to a form of neoliberal-ableism (Barnett et al. 2008; Bessant 2006; Grover and Soldatic 2013) that emphasises individual potential, autonomy and competence as characteristics of the desired citizen. However, as we demonstrate, when the personal circumstances of individuals is such that they are incapable of possessing these characteris- tics – of not integrating with the preferred policy solution – they are simply being left behind, perpetuating a ‘wicked problem’ of disability, marginalisa- tion and exclusion.

A distinguishing feature of wicked problems is that they have “no stop- ping rule” (Rittel and Webber 1973, 162). Unlike solving a crossword puzzle, finding the final solution is not possible (Rittel and Webber 1973; McCall and Skrtic 2009). It is important, though, to obtain an understanding of the con- troversies and the stakeholders, in order to tease out possible actions, rather than final solutions (Head 2019). In the section that follows, we describe the method we used to gain insight into the experiences of our interviewees and how they had, or had not, engaged with the NDIS.

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3. Method

The original aim of our project was to conduct an exploratory study into the NDIS experience of people in the Wollongong region of NSW, with a particular focus on a cohort of people who experience some form of socio- economic disadvantage. Our sample was drawn from the population of SVDP clients who were receiving the Disability Support Pension, as we believed that this cohort had a prima facie case for applying for the NDIS. Although the NDIS is promoted as a whole-of-life insurance approach for those with a disability, and not as a welfare system, as recipients of the Disability Support Pension have met the eligibility criteria for a disability, we considered this an appropriate entry point to identify potential NDIS applicants (Commonwealth of Australia 2017).

Our research was conducted within a year of the roll-out of the NDIS in Wollongong, and we anticipated that our research would give us some insight into the type of assistance that NDIS recipients required to manage their plans. Our project was conducted in conjunction with staff from the St Vincent de Paul Society (SVDP) Wollongong, and data was obtained through interviews with SVDP clients (those people to whom it pro- vides support).

The interviews were constructed in accordance with a pre-prepared list of open-ended questions, aimed to elicit details of personal particulars and circumstances, nature of disabilities, support currently accessed or required, use or otherwise of the MyGov website (an online portal set up by the Australian government), knowledge about the NDIS and, if applicable, their experience with the NDIS and whether support for financial management of their NDIS plan was required. As indicated, it became apparent early in the interview period that very few of the interviewees were aware of or had experience with the NDIS. Accordingly, questions were reframed around their understanding of the NDIS, the nuances of their circumstan- ces, and support required. In many instances the interviewers had to move from the pre-prepared questions to more effectively engage the inter- viewee and to respond to their individual stories. In addition to an audio recording of the interviews, one of the interviewers in each interview took written notes.

Transcripts of the interviews were reviewed by all members of the research team, with relevant details transferred to an Excel spreadsheet for analysis. Interview notes were referred to in instances where the transcripts were unclear or inaudible. Data was analysed in terms of themes, although given the unexpected responses from our interviewees, significant attention was given to the more nuanced responses of individual interviewees. Results from our data analysis are presented in the following sections.

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4. Demographic profile

As indicated, we interviewed 32 people who had a relationship with the St Vincent de Paul Society (SVDP) in Wollongong and who were also recipients of the Disability Support Pension. Only 6 of our interviewees were receiving support under the NDIS at the time of the interview. The gender profile of interviewees was 63% male and 37% female. Our sample was skewed towards older age groups, with 59% being between 45-64 years of age. All but three of the interviewees were born in Australia, with only one person identifying as culturally and linguistically diverse (CALD). Given the fact that all of the people in our sample were recipients of the Disability Support Pension and various forms of support from SVDP (and other aid organisa- tions), and that approximately 62% experienced some form of psychosocial disability (see following discussion), it was perhaps unsurprising that many lived under the poverty line (ACOSS 2018). The needs of many in the sample group were framed around the basic necessities of life such as safe and per- manent accommodation, food, utilities, transport and medicine.

In terms of accommodation, 59% of the interviewees depended on public housing, while a further 19% accessed temporary housing. The public hous- ing status of some of our interviewees led to concerns for their own safety.

I had lots of burglaries last year, from October to about two months ago. The housing wouldn’t put the bolts on my glass doors. They weren’t put in properly. [The Housing Department] didn’t put the bolts on until a month ago. I was having home invasions non-stop. They broke the fridge door off. They broke the lock right through. I’ve got about 10 event numbers from the police from people breaking in. They’re even going to the roof now. (Interviewee no. 1)

… all the junkies that just, as soon as I leave to go and see my partner, they just break into my house and take it. (Interviewee no. 6)

The temporary housing status of others presented a significant problem in terms of NDIS outreach; the absence of a regular address made contact by mail almost impossible. This problem was exacerbated by the fact that over 50% of the interviewees reported that they did not have the financial resour- ces or technical skills to access online material (for example the NDIS website or usual email channels).

… sometimes they want you to fill out, scan things, and upload things, and when you’ve only just … I don’t have a laptop or a computer, or a scanner. (Interviewee no. 11)

More than 30% of the interviewees indicated regular struggles around basic needs such as food and electricity, and approximately two thirds sought support from a range of charities, including SVDP, Anglicare, Barnardos Australia, Wollongong West Street Centre, Illawarra Multicultural Services, Homeless Hub, Lifeline and Wesley Mission. Only 12% of the

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interviewees had friends and family to rely upon. Clearly, the need for food was high on the list of priorities of our interviewees:

We sometimes use them [charities] for food help or the community soup kitchen, which we now have discovered does food parcels. So we get help in the way of food but not our disability-wise. It’s kind of flying under the radar with the autism. (Interviewee no. 23)

Because obviously I’ve been struggling mentally because of the income. I’m left with [nothing], not to pay the bills, it’s like you know food is really expensive now. (Interviewee no. 4)

I went up last month to the railway station in case the food bank comes in. It’s a bit depressing you know, having to walk up there and have someone feed you. (Interviewee no. 8)

The only support that I usually get, if I’m struggling with a bit of food, then I ring up Vinnies. (Interviewee no. 2)

I was really, really broke and I needed some food. (Interviewee no. 3)

I’ll pay all my bills first. That’s the first thing. I have rent. Food’s the last thing. So whatever I’ve got left, I’ll buy something. If I’ve got money left… I’ve recently got a list of sort of emergency food help, or cheap places around the area. (Interviewee no. 7)

A common need identified among the sample interviewees was financial help with electricity and gas bills, and several sought assistance from non- profit organisations:

[Anglican Care] used to help me with the electricity, but the issue is that everybody wants you to go on, come out of your pay, but it’s always too much of a lump, so I juggle it. (Interviewee no. 7)

An example of the dire situation experienced by some of the interviewees is reflected in the response of one of our interviewees:

[I] got no teeth, and people find it hard to understand me and all that…My problem is I’ve been trying to get teeth for the last 12 months, and I’m under the thing from the government the other day. I went to see them the other day and they said oh, you’re booked in to get all your teeth out. I said, get all my teeth out, I said I’ve got none, except two on each side of my bottom. I have no money to fix it. [Interviewee no. 6]

Interviewees were asked to self-identify their primary and secondary dis- abilities, and while we did not seek supporting medical evidence, the responses point to a cohort experiencing significant physical and mental dis- ability. The most significant primary disability identified related to back or spinal cord injury (36% of interviewees), acquired through motor vehicle accidents, workplace injuries, or injuries resulting from drug abuse or as a victim of crime. While over 15% of the interviewees acknowledged psycho- social disability as their primary disability, over 46% acknowledged it as their secondary disability. This aspect alone, according to Mavromas, Moskos, and

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Mahuteau (2016), presents a significant barrier to NDIS access or successful outcomes. Other primary disabilities of interviewees included neurological disability, autism, heart disease, intellectual disability, acquired brain injury and hearing impairment.

Though all of our interviewees were receiving the Disability Support Pension, thereby at face value providing a potential opportunity for NDIS support, only six had actually been successful in their applications. The remainder of the cohort, who were already disadvantaged by some form of disability, were further marginalised by poverty, substandard housing arrangements, lack of skills and resources to engage with systems such as the NDIS, and limited support mechanisms. This observation supports the views presented by Carey et al. (2017), who point to the policy implications of the social determinants of health (such as housing, education and employ- ment). They conclude that unless systems such as the NDIS pay particular attention to these determinants, they may further “entrench or expand exist- ing inequities” (Carey et al. 2017, 6), exacerbating an already wicked prob- lem. At the moment, people such as those in our sample appear to fall outside of the NDIS net, and unless the NDIA makes substantive efforts to engage this hard-to-reach group, the opportunity for choice and control will remain elusive. The following section presents and discusses our findings, with further reference to interviewee comments.

5. Findings

For our socio-economically disadvantaged interviewees, the NDIS experience was mixed, however a number of themes emerged from the analysis of the transcripts, around which we have organised our findings. These themes concern the level of awareness of the NDIS, uncertainty around eligibility for the NDIS, the level of misunderstanding of the NDIS by successful partici- pants and the perplexity of those who had applied for the Scheme but were unsuccessful. Finally, we draw attention to the types of support needed by interviewees.

Unexpectedly, our interviews revealed a lack of awareness of the NDIS generally (see Figure 1). Thirty-one percent of interviewees had never heard of the NDIS, even though, as Disability Support Pension recipients, we had expected that our cohort would be familiar with the Scheme.

Even among those interviewees who were aware of the NDIS, there was significant confusion as to its purpose or eligibility criteria. Of those we inter- viewed, 41% stated that they had heard about the NDIS but decided not to apply. This group indicated that they had heard of the NDIS from multiple sources, most often through family and friends (22%) or television advertis- ing (19%), but also from medical practitioners (9%), and other community

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groups (6%) and service providers (13%). From our analyses of interview responses, the choice not to apply for funding under the NDIS seems to be the result of a lack of skills, a lack of assistance, or uncertainty around eligi- bility requirements, as well as discouragement from medical professionals. Isolation was identified as a significant barrier in the sharing of NDIS infor- mation and in taking the step towards applying for the NDIS.

The irony for some of these interviewees is that it is their disability that is inhibiting them from accessing disability support. From interviewee no. 23:

Maybe, ‘cause the autism blocks me from working stuff out with the internet, like if I have to go somewhere. It’s, like, recently some link wants me to go on to myGov and, I’m sitting there thinking, “How do I do that?” And then they’re saying, “Link your myGov with something” I’m like, “Huh, that’s not explaining it.

Another interviewee suffering from depression and anxiety stated that:

That [the application process] freaks me out. That freaks me out. I get anxiety, I get anxiety and I tremble. Extended forms like: “Name, Address, Phone Number, How many Kids?” Real straight-forward stuff. (Interviewee no. 5)

There were other interviewees who were willing to apply, but required assistance. As stated by interviewee no. 17:

I’d like someone to do it for me because I can’t fill the forms out. Even with Centrelink, I had to tell them I need someone to help me all the time. Because I can’t fill forms out and things like that.

From interviewee no. 13:

I don’t even know where to apply to or how to go about getting on it.

Some interviewees denied that they needed any support; one responding “It’s not like I’m invalid” (interviewee no. 27). Another interviewee in this group stated that:

10 (31%)

13 (41%)

6 (19%)

3 (9%)

0

2

4

6

8

10

12

14

Not aware of the NDIS Aware of the NDIS but did not apply

On NDIS Applied but rejected

Interviewee awareness of the NDIS

Figure 1. Awareness of the NDIS among interviewees.

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I’m very independent. I mean, yeah, I’m actually highly qualified, just … I’ve just got a bit of personality disorder on top of the other stuff. (Interviewee no. 7)

One interviewee indicated that their doctor had not been supportive and had discouraged an application for the NDIS.

I talked to my doctor, my psychiatrist who I’ve seen for 29 years, and he didn’t give me much information back as if to say he didn’t really want me to do it, to go through it. (Interviewee no. 1)

Based on analysis of the transcripts, social isolation appeared to be com- pounded by a lack of financial independence, and this kept people house- bound and away from social interactions. These limited social interactions inhibited the development of support networks and information flows. Our interviewees also noted psychological barriers to social participation, which often arose from physical health complications, with depression being a common reason for extended isolation.

I don’t have any income, and because there’s no income I don’t … until the bills are paid, I don’t have any money to do any leisure or pleasure. There’s no leisure or pleasure, do you know what I mean? (Interviewee no. 4)

I got a mate, sometimes he’ll get me my packet of smokes, something if I need it. But nothing, there is nowhere I go. (Interviewee no. 24)

I have a lotta issues getting myself to doctors and getting myself … like I need to get to a psychiatrist at the moment or a psychologist I can’t remember which one. I think both but, I’ve been literally putting that off for two months. Like I need sort of someone to not come and get me, but sort of just to push me along with it ‘cause otherwise I just get in too much of a bad head space and I just shut down and sit at the house. (Interviewee no. 25)

Accordingly, the NDIA’s “major focus” (2017, 19), on community engage- ment and community events and seminars, is likely to be an ineffective out- reach mechanism for this cohort.

Among those who had decided not to apply for funding under the NDIS, several suggested that the decision was, generally, based on an inadequate or incorrect understanding of the NDIS.

Responses included:

I’ve heard of it, yeah. But I don’t know what it’s about. (Interviewee no. 13)

[I heard] when they were talking about it because I leave the news channel on, but I don’t know who it’s for and what it’s for. (Interviewee no. 17)

Other interviewees in this group believed that the NDIS is limited to a cer- tain disability:

I think it’s more for Down Syndrome. (Interviewee no. 18)

I just thought maybe it’s more for disability people, like with severe disabilities, you know, that are in homes and stuff. (Interviewee no. 29)

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Some of our interviewees who had heard of the NDIS believed that its purpose is to facilitate transition to the workplace. For example:

I actually went down to NDIS and approached the receptionist to find out more information… What I got from the receptionist is it’s mainly a place for you to get back into the work area. (Interviewee no. 1)

At this point it is useful to reiterate that 72% of the interviewees were either unaware of the Scheme, or had distorted views about its purpose and the eligibility criteria. Of the remainder of the sample, only 19% were NDIS participants with plans in place, and 9% had applied but were unsuccessful (refer Figure 1). Of the former, interviewees were asked about their under- standing of the Scheme. Interestingly, even though these interviewees had been through the entire process, many still did not have a clear understand- ing of the NDIS. Responses included:

I know that it’s quite good for the people that have got disabilities that can’t go shopping on their own. (Interviewee no. 3)

It’s for, like a thing to help you for funding to get help… like it pays for my counselling. (Interviewee no. 22)

Because of this lack of understanding of the Scheme and the planning process, some interviewees in this group were not utilising their plans. Interviewees stated:

Personally I haven’t taken many of the activities. I’m not sure if I’m going to continue to seek the same activities as I put down originally in the plan. (Interviewee no. 21)

We didn’t use it [the plan] at all because we don’t know what [to do]. Some people said we have to make contact… if you want to become their client. But my son is different so I’m just thinking [how] can we use it. (Interviewee no. 28)

I didn’t really use the support services except for the transportation. And it was basically because I felt like I wasn’t using all the time, but I kind of felt kind of like I felt guilty for accepting services because I wasn’t doing the right thing. (Interviewee no. 31)

Under the NDIS planning processes, if the services required are not articu- lated clearly, the NDIS plan can be ineffective. During our interviews, it became apparent that confusion around operation of the Scheme was impacting on participation in, and satisfaction with, the programs. Interviewees stated, for example:

I couldn’t get the transport… All I want is transport. (Interviewee no. 21)

All my funding [is] with the place I go to. I didn’t get enough funding to go out on the weekend and get support or anything like that. (Interviewee no. 22)

The concept is not bad, but considering what he used to have and what he gets now, he’s behind the eight ball… Now the NDIS has come in, he’s worse off, because now instead of going on a trip somewhere and it costing him nothing, now he goes on

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trips that cost him money, but the care he gets there [is] for nothing. (Interviewee no. 3)

I’m still given choices, but the control seems to be lax a bit. Lax because it’s not doing the job it was supposed to, and maybe they can’t do the job. (Interviewee no. 21)

I find it quite difficult to use at the moment and I can’t do anything really because when I want to do something I have to go to the NDIS coordinator, you know even though there’s not enough funding there for me. I can’t do what I want to do because I’ve got no money there. It’s all gone. (Interviewee no. 22)

So for those whose NDIS plan was approved, a range of issues emerged. While some interviewees were not utilising their plan at all, others had applied for a review of their plan. The latter situation was mainly due to a lack of awareness and understanding of the NDIS and the support that it can provide at the time of application.

As noted, the remaining 9% of our interviewees had applied for the NDIS but their applications had been rejected by the NDIA. This group of inter- viewees understood the NDIS to be a support system for people living with a disability. However, in their interview responses, it seemed that they did not fully understand the reasons why their applications were rejected. Interviewees stated:

They said you get rejected because they accept the people who they’re born with a disability, not get a disability in the future. (Interviewee no. 9)

I was ringing like three times a week, and … .[a] gentleman called me and said I didn’t have enough proof. And I said, “Well, it clearly states I have multiple fractures, I have severe osteoporosis, I’m nearly 62. Do you really think that it’s going to get better? It’s not, it’s going to get worse.” And he said, “Well, I can’t see you.” And I said, “But my doctor’s clearly stated on the forms.” He said, “But that’s not enough.” I said, “Well what more do you need?” He said, “I need more letters, more proof.” (Interviewee no. 11)

Basically [I was rejected] because I wasn’t suffering too much. I didn’t have a disability that concerns them too much. They basically said I wasn’t, I didn’t have this much disabilities to … for them to cover. (Interviewee no. 15)

With awareness and understanding of the NDIS examined, our attention now turns to the support that interviewees would ideally seek to help them participate more meaningfully in society. It is important to note again that all of our interviewees identify the Disability Support Pension as their main source of income, and all have received some assistance from SVDP. This positions our interviewees as socio-economically disadvantaged, meaning they often struggle to cover weekly living costs. It is also important to note that the NDIS was never meant to be a welfare scheme (Commonwealth of Australia 2017), and as such some of our interviewees may not be eligible for the Scheme and some of the support identified in the following may not fall within its scope. Responses, however, point to the hardships of those at the margins.

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The financial hardship and focus on meeting basic and day-to-day needs appeared to prevent our interviewees from considering the support services that they might be able to access under the NDIS. When asked about the types of support that would improve their circumstances, the majority of interviewees indicated that the major hardship they faced was in meeting essential living costs. Responses included:

Necessities, bills and things like that. (Interviewee no. 12)

Electricity I suppose, I mean electricity’s a big one man. (Interviewee no. 20)

When it comes to maybe assistance with food. (Interviewee no. 5)

About three months ago I needed help with one of my electricity bills. They weren’t sending my electricity [bills] … I’ve got electric and gas and I thought they were both in one because I’d never received a gas bill. So, when I went to get help for my electricity bill, they said on the phone “you’ve got an outstanding $400.00 gas bill” and I was like “Oh”. (Interviewee no. 29)

Interviewees were also asked about other types of support they might expect from the NDIS. Many struggled to identify any item of support. Responses included:

I don’t know what I’d utilise there. I’d have to think about it. (Interviewee no. 19)

We don’t know what it’s about and what it’s for. (Interviewee no. 17)

I honestly can’t think of that right now mate (Interviewee no. 26)

Others indicated they needed support with transport to perform their daily activities.

I need transport I know that. Transport’s a big thing. (Interviewee no. 20)

You can get community transport. (Interviewee no. 11)

One indicated that support with socialising would be beneficial:

Like helping with my bi-polar, get me out there and not be afraid of other people. (Interviewee no. 26)

Some interviewees indicated they needed support to help them use technology:

Maybe, the way technology’s going, maybe some sort of assistance to guide me with computers and how to keep up to date with computers and how they work. (Interviewee no. 30)

… I need a good technology training with computers, how to edit a video, how to make a movie. And I’m in the entertainment biz… . cause I got my channel and I have no idea how to continue that at the moment. (Interviewee no. 23)

Another group indicated they needed support with house work:

I have no social worker. I am just on my own here,… housework, everything, and work. (Interviewee no. 1)

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Showering, house cleaning and trips to the doctor. (Interviewee no. 15)

Another interviewee requested assistance with the cost of medication:

Well you see my medication’s quite expensive. It’s not PBS. It’s hard because it costs me about 70 bucks a month. So you know, on a pension, that’s difficult… .I went to see a private neuropsychiatrist. It was every other medication was making me tremor and sick. So I went on to that one which is expensive. (Interviewee no. 31)

Our analyses suggests that the lack of awareness of the NDIS could, in part, be attributed the social isolation that is often associated with living with a disability. The social isolation and disability experienced by this cohort, however, is compounded by socio-economic disadvantage. With the NDIS promoted and facilitated through service providers, community pro- grams, and technological platforms, the socially isolated population, which includes many people with disabilities, but especially those suffering socio- economic disadvantage, are missing out. In effect, the lack of socialisation limits the ‘hard-to-reach’ populations’ awareness and understanding of the NDIS. This suggests alternative means of connection may need to be devel- oped to better align ‘hard-to-reach’ community needs. Further, the majority of our interviewees could not afford an internet connection, and some did not have the skills to use a computer. These people are not readily able to access online information about the NDIS, and alternative means of outreach need to be seriously considered.

All of our interviewees indicated that they experience financial stress. This resulted in a heavy reliance on charitable organisations to meet their needs, such as a need for food and payment for utilities. As described in the fore- going, the people that the SVDP assisted had become accustomed to living on very little money and had learnt to focus mainly on their essential needs. One result is that living day-to-day meant that ‘hard-to-reach’ populations had a limited capacity to pursue other types of support. As such, the major- ity of interviewees were unable to consider the detailed and meaningful type of disability support that they could access under the NDIS, and instead limited their considerations to everyday living expenses and general transportation.

6. Conclusion

The ‘choice and control’ offered by the NDIS aims to enable access to ‘reasonable and necessary support’ in order that people with disabilities can participate meaningfully in society (Frisch 2013). The capacity to participate meaningfully in society is consistent with the neoliberal ideals upon which the NDIS is based and which privilege market mechanisms as the way to achieve “self-actualisation and self-development” (Sothern 2007, 155). Neoliberal-ableism directs individuals to their “ablest” (Goodley 2014, 22),

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with the NDIS promoting programs that contribute to the development of adaptable and independent workers. When we embarked on this research project, we envisaged that we would interview SVDP clients who were receiving funding under the NDIS, with a view to examining how funds were utilised under the Scheme. Instead, we met people who had not even heard of the NDIS, had no idea about how to apply for it or whether they’d be eli- gible, and, when asked found it hard to think beyond the basic necessities of day-to-day living to the types of the supports that the NDIS could offer. The degree of socio-economic disadvantage experienced by our cohort placed them out of reach of the NDIS. We argue that this means our cohort misses out of the Scheme’s goal of participating meaningfully in society. NDIS notions of ‘reasonable and necessary’ are worthless when the very nature of what is considered ‘necessary’ amounts to electricity, food, trans- port, and secure housing. For many, accessing services to assist with disabil- ity management was simply not something that had been considered, or, at most, was secondary to basic living needs. When disability is overlaid with the marginalisation that comes from socio-economic disadvantage, as is the case with this cohort of interviewees, the capacity for people with a disability to participate in a complex program like the NDIS becomes problematic.

The issues faced by the interviewees examined in this study do not have a single root cause, but are intertwined with other problems including dis- ability, social exclusion, lack of education, lack of community integration and support, or negative associations with authority. Many of these ‘wicked prob- lems’ combine with such complexity that interviewees, or others like them, may not even be aware of their disability (Lysaker et al. 1994; Gulliver, Griffiths, and Christensen 2010). Many of our interviewees identified a psy- chosocial disorder as their primary or secondary disability, making the con- cept of ‘choice and control’ even more challenging (Mental Health Australia 2020). It appears that the complex needs of the group we examined are not being addressed by this Scheme.

When Rittel and Webber (1973) first considered wicked problems, they suggested that inclusive discussion would be a beneficial way of negotiating ‘provisional’ resolutions among stakeholders (Head 2019). Rather than simply adding “more data” (Head 2019, 182), an effort should be made to under- stand value differences through “broad processes of argumentation” (Head 2019, 182) as a way of tackling or managing or coping with wicked prob- lems. In this vein, we argue that the NDIA needs to improve communication with potential participants, particularly those from socio-economically disad- vantaged and socially isolated groups. While the NDIA has gone to some lengths to engage with people with disabilities in the formulation of its Board, and with indigenous and CALD communities in the development of its strategies, it seems that socio-economically disadvantaged groups have

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been categorised as ‘hard to reach’ with little further engagement (NDIA 2017, 59). Our findings indicate that many potential participants are unaware of the Scheme or face incomplete information about it. We suggest that to promote greater awareness and use of the Scheme the NDIA leverage off potential partners such as Centrelink, charities and general practitioners. We advocate the creation of non-web based promotional materials such as post- ers or leaflets that could be placed in locations potential participants may gather.

Future research opportunities in this space abound. We have reported on a study of 32 individuals, with particular demographic characteristics. This study could be expanded to other SVDP Conferences in other parts of NSW and/or Australia to examine for similarities or differences. Research might also examine the needs of potential NDIS participants who, for example, have multiple disabilities, are from culturally diverse backgrounds, are experi- encing homelessness, or are illiterate. We have provided evidence to suggest that it is vital for NDIS planners to be able to assist this particular cohort of potential participants to plan for expenses beyond their day to day living needs and budget for services that will go some way to improving their lives. Research that investigates the NDIS planning processes will be helpful as the NDIS roll out continues. Interesting comparisons might also be made by interviewing NDIS participants who have been accessing the Scheme for some time, or who are accessing the Scheme on behalf of their children or someone in their care. With the NDIS in relative infancy, the potential for research in this area is significant.

Acknowledgements

The authors would like to gratefully acknowledge the contributions of Kellie McCombie to earlier iterations of this work, as well as the feedback and suggestions of the Editor and anonymous referees.

Disclosure statement

No potential conflict of interest was reported by the author(s).

ORCID

Sandra Chapple http://orcid.org/0000-0003-1535-834X

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