NDIA

Focus Group Research Report

March 2023

Executive Summary

Respondents across all cohorts exhibited a remarkable degree of emotional engagement with the NDIS and the plight of Australians with disabilities, regardless of their initial knowledge or experience of the Scheme. That is, even those who had a low understanding of the Scheme at the outset still exhibited care and concern about the issue, and revealed more passion about it and its importance as each group progressed. Indeed, those with no lived experience of disability generally demonstrated as much emotional connection as those with such experience. The universality and degree of empathy and compassion that respondents from all demographic segments exhibited towards people with a disability was notable.
This extended to a universality of support for the concept and intent of the NDIS. Such support is predicated most powerfully on a) a sense of moral duty (that is tied to national identity) and b) its capacity to empower Scheme participants to live a fulfilling (and productive) life. Other key features included: i) provision of a ‘safety net’ for all Australians and ii) its facilitating the destigmatising and mainstreaming of disability. Critical to this sense of ‘moral duty’ is a view, even among conservative respondents, of people with disabilities as being ‘the deserving in-need’, for whom Government support is necessary and desirable. Respondents identify with disabled Australians and see our treatment of them as indicative of the kind of country we are, or want to be. The NDIS is viewed by many as a fundamental government service, on a par with Medicare.
While support for the Scheme was universal prior to showing respondents the video clip of disability rights advocate, Elly Desmarchelier, after viewing the clip, the intensity of support grew significantly. This clip spoke effectively to both the sense of moral duty and the benefits of the NDIS in empowering people to lead productive, independent and fulfilling lives. Indeed, the clip even greatly softened the attitudes of individual respondents who expressed hesitations about NDIS.
While respondents are deeply committed to the idea and intent of the NDIS, there are significant concerns about the reality of the Scheme. NDIS ‘horror stories’ about barriers to access/fairness in the Scheme and system rorting are widespread and, for many, define their ‘experience’ of the Scheme, i.e. that is all they hear about it. This presents a central communications challenge: to supplant the prevailing narrative of stories entailing problems with access, equity, system rigidity, and rorting, with the accounts of the NDIS’s capacity for transformational change.

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Barriers to access and inequities in the NDIS may constitute the most significant communications challenge as these stories are, typically, received via NDIS participants (or those who have unsuccessfully applied for the scheme) known to respondents (or second hand). This gives the stories immediate credibility. As such, there is a sense among some respondents that there are undeserving participants who are able to ‘work the system’, while more deserving applicants have been rejected. A considerable number of group respondents with disabilities spoke of the Kafkaesque barriers to their being able to access the Scheme. System rigidity that does not account for the complexity of disability is also cited as a significant concern by a number of respondents - particularly those with disabilities.
Rorting is also seen as problematic by many respondents - particularly among providers who price gouge, exploiting participants and carers. These stories are seen in the media and while there is a generalised distrust of news reporting, the “horror stories” respondents hear from people they know connected to the Scheme make these media reports credible. However, the ‘victim’ of such rorts is not necessarily seen as the taxpayer, but rather the deserving people with disabilities who are denied support, or whose support is constrained, because of cost blowouts and over-charging.
None of these concerns, however, prompted respondents to call for cuts to - or scrapping of - the Scheme, even when groups were “stress tested” by contextualising the NDIS (and its costs) within discussions about respondents’ personal economic anxieties and concerns over government spending/waste. Support for the idea/intent of the NDIS is resilient. Rather there are calls to audit, reform, and streamline it to address rorts and inequities, so that those who require support can more readily obtain it. Participants want “transparency” and “accountability” – not cuts per se. Indeed, when talking about reforming the NDIS, respondents are explicit about not wanting to see anything that would hurt, or make life more difficult for, NDIS participants. For most respondents, the desire to reform the NDIS was about “protecting” it – to take away the arguments of those who may seize upon rorts, inequities, and blowouts to attack or diminish the Scheme.
There was inconsistent awareness of NDIS cost blowouts and, once prompted, variable levels of concern about it. Once again, the primary concern about these blowouts was that they might jeopardise the Scheme by undermining its social licence and create pressure to cut budgets, depriving those needing support. Even when treated with information about the $54b ‘blowout’, respondents echoed their responses to accounts of rorts and advocated for maintaining the Scheme (and its funding levels) while cracking down on fraudulent and other problematic activity. A significant number of respondents viewed the cost overruns as a) an inevitable by-product of any Government programme and/or b) the product of ‘teething problems’ that come with any new initiative. Many respondents were eager to explain the cost blowouts via factors beyond the NDIS’s control, such as inflation, COVID, and the increasing preparedness of people to seek help for various conditions. Others placed the blame on those who created the initial budget (under) estimates. In short, respondents sought to rationalise or minimise the blowouts.

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Redbridge

There is a risk, however, that such latitude may not be so readily granted once people are aware that the NDIS is approaching its 10th anniversary, as many respondents are under the impression that the Scheme is only a few years old.

‘Economic multiplier’ arguments in support of the NDIS generally failed to resonate with respondents who see any economic benefits as secondary to the human benefits of the Scheme. Indeed, the economic frame had primed a number of respondents to ask questions about the NDIS’s economic soundness and efficiency, or debate the validity of economic claims, when they otherwise would not have embarked on such a line of enquiry.
More effective than arguing for the NDIS’s broader economic benefits as justification for its existence is the articulation of ‘concentric circles of benefit’ that the Scheme affords - namely that the Scheme liberates the capacities of individuals with disabilities, their loved ones, and society’s systems (i.e. hospitals). Respondents then draw the link independently with the scale of economic benefits that are the result of this liberation of capacity. In this context, respondents see the NDIS as one of the most beneficial things that Government could fund. A common refrain was that, of all the things that Government could spend taxpayer money on, respondents were happy for it to go to the NDIS. Again, they explicitly liken it to Medicare.
Respondents consider Scheme participants and their families and carers to be trusted sources of information about the Scheme, as well as the NDIS website itself. This is a key part of the appeal of (and risk for) the NDIS: the vast majority of respondents know someone who is connected to the Scheme. They are greatly influenced by the human stories/experiences, both good and bad. Critically, it is the positive human stories that respondents explicitly identify as “missing” from the public/media discourse. They want these stories - they are engaged and inspired by them. Indeed, respondents consistently talk about how such stories are central to their perceptions of the Scheme’s performance. There is then a desire, among some respondents, for more statistical information to buttress the human stories about the benefits, reach and accessibility of the Scheme (i.e. how many Australians it is helping).

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Communications Recommendations

The communications objective this research sought to address is: to identify the narrative framework that is best to build the Australian Public’s support and understanding of the value of the NDIS.

It is noted that public opinion and sentiment is never static and subject to measurable change, contingent on both internal and external circumstances. The assessments found in the current research could change within six months or they might not. But based on what we have found here, we suggest six key messaging principles:

The value of the NDIS is measured in human terms – not economic. There may be positive economic consequences of those human benefits, but they are secondary. Indeed, trying to engage on an explicitly economic argument just muddies the water.
The core value of the NDIS is the empowerment of people with a disability to lead as fulfilling and independent a life as possible. This outcome is meaningful in itself.
This human benefit extends beyond the individual participant, the effects of the NDIS ripple out. That is, benefits exist in the empowerment of the individual and unlocking their capacity/potential – capacity to lead a better life: a happier and more confident life, a more independent life, a more connected and productive life. That empowerment then unlocks the capacity of family members who may otherwise be dedicated to caring for their disabled loved one. This unlocked capacity – for both the participant and their family – flows out through community (e.g. through contribution and involvement), support services (e.g. by taking pressure off health services), and the economy (e.g. through workforce participation).
We talk about these ‘flow-on’ benefits in terms of benefit to the participant … not the benefits to the economy or others per se. For example, we don’t talk about savings to the health system. We talk about participants being able to lead healthier and safer lives, and not being dependent on trips to the ICU. We don’t talk about the economic value add of having X number of participants in the workforce. We talk about the benefits of having a sense of being productive, we talk about self-worth. Our audience will join the dots.
There is an emotional value to the NDIS for non-participants and people without a disability. The NDIS fulfills a sense of moral duty and is integral to national identity. It reflects who we should be as a nation: people who help out those less fortunate than ourselves (in reality, there is a caveat: so long as those less fortunate are no threat to our status). In this sense, Australians do not see people with a disability as an ‘other’ or ‘out group’. They are ‘ours’ to help … and a failure do so would create an image of ourselves that we don’t like.

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The NDIS is new and needs to be improved to ensure it is delivering the best possible support to those who need it most.

At the moment, it’s not perfect, but it’s not broken. We don’t talk about improvements as being aimed at cracking down on costs or making things more efficient. We are making improvements to ensure those who need the most, get the most – i.e., a Scheme that is responsive to the participant. If we must talk about “rorts”, for example, we don’t talk about the cost to the Scheme; we talk about the impact on participants not getting the supports they need/deserve.

In narrative terms:

The NDIS represents what’s best about this country. That we look after one another and, most importantly, look after those less fortunate than ourselves. We are a lucky country and we can’t allow people to be excluded from that because of a disability. We should be proud of the NDIS. Along with Medicare, there is no better use of tax-payers’ money.

The NDIS enables Australians, regardless of their level of ability, to lead the most fulfilling life possible. A life of independence and dignity. A life of contribution to the community with the sense of self-worth that comes from feeling productive. A life of improved health and personal safety. A life of connection to others through being able to do the simple, everyday things that we take for granted. It unlocks the great potential of disabled Australians – and their families – and enables them to participate in the life of our country on their own terms.

The Scheme is not perfect, but it’s not broken. It’s still young – growing and learning. But we can make it fairer, more transparent, more compassionate, and more accountable to those it supports. We must ensure that those who need it most are getting the supports they need.

Conveying the Narrative

This narrative works through all media channels and platforms but is most effective and persuasive when communicated by Scheme participants and their loved ones and carers.

NDIS platforms, including its website, are the most trusted source of information in terms of accuracy and reliability. NDIS social media channels are also effective for humanising information about the scheme, particularly where the voices of participants, loved ones, and carers are used.

Consideration should be given to provision of quantitative information to be readily and easily available on the NDIS home page that details the ways in which the scheme transforms the lives of participants. While such information is currently available, it is recommended that it be given more prominence and accessibility.

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What We Did

16 x online (Zoom) focus groups comprising approximately 160 respondents¹:
- 14 groups comprising seven attitudinal constituencies across Australia
  - 2 x Future Shock - Millennials (18-39 yo), university educated, living with economic anxiety, typically renters, living in the inner and middle suburbs of major cities (Syd/Mel/Bris) highly socially progressive; 1 group comprising males, 1 group comprising females
  - 2 x Homebuilders (30-49yo), mix of genders, university-educated professionals, raising/starting families, experiencing economic stress due to mortgages, leaning socially progressive; living in the outer suburbs of major cities (1 x Melb/Syd/Bris; 1 x Perth/Adel)
  - 2 x Progressive Middle (45 yo+), mix of genders, university educated, typically homeowners, working in high-paid employment, leaning socially progressive, living in the inner and middle suburbs of major cities (1 x Melb; 1 x Syd)
  - 2 x Aspirational Aussies, mix of ages and genders, university or vocationally qualified, business owners or working in well-paid employment in either skilled trades or business/technical professions, leaning socially conservative, living in the middle and outer suburbs of major cities or larger regional centres (1 x QLD regional; 1 x Perth/Adel)
  - 2 x Outsiders, mix of ages and genders, with a vocational or high school education, working in lower-paid, precarious employment, high levels of economic stress, leaning socially conservative, living in the outer suburbs of major cities (Syd, Mel, Bris); 1 group comprising males, 1 group comprising females
  - 2 x Regional Progressives, mix of ages and genders, with a similar profile to Homebuilders but living in regional areas and with lower levels of economic stress (1 x NSW; 1 x VIC)
  - 2 x Working Townies, mix of ages and genders, with a similar profile to Outsiders but living in regional towns/centres (1 x Nth Tas; 1 x QLD)
- 2 groups comprising people with a disability, mix of ages, living in the suburbs around Sydney, Canberra, Melbourne, Brisbane, Hobart, and Adelaide; 1 group comprising males, 1 group comprising females
Groups explored a) awareness/understanding of and experiences with the NDIS, b) where and how respondents obtain their knowledge of the NDIS (ie media/social media/broader social network sources), c) positive and negative aspects of the NDIS, the importance of the NDIS to individuals and the community, d) values underpinning the NDIS, e) awareness of and responses to NDIS funding issues and cost blowouts, f) expectations of Government with regard to the NDIS
Fieldwork took place between 6 and 22 Feb 2023

¹ Of note, recruitment occurred without disclosing that the topic of the focus groups would be the NDIS, thus ensuring there was no selection bias of respondents

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What We Found

An Extraordinary Degree of Engagement with the Issue

Respondents across all cohorts demonstrated an extraordinary degree of emotional engagement with issues pertaining to the NDIS, regardless of their initial knowledge or experience of the Scheme.

People who had had no lived experience of disability and who had little knowledge of the Scheme demonstrated as much emotional involvement with the issue as those who had experience of disability - whether their own, or the experience of loved ones. Those who were learning about the NDIS in the groups very quickly began to speak with considerable confidence about the essential nature of the Scheme: “Such a great idea! So glad that I live in a country where these sorts of things are in place!”

Across all cohorts, those who had a low understanding of the Scheme at the outset of the focus groups became more passionate about it and its importance as each group progressed. We were consistently struck by the universality and degree of empathy and compassion respondents from all demographic segments exhibited towards people with a disability, as well as the degree to which they were moved by accounts of the NDIS’s capacity to offer Scheme participants transformational change in their lives.

Any variation in response was generally minor and personality based - i.e. not cohort dependent. Indeed, there was a remarkable consistency in support among all respondents for the idea and intent of the NDIS. As will be discussed further in the report, however, issues with the scheme’s implementation - particularly with regards to equity and access, and problematic provider practices - have the capacity to negatively impact respondents’ perceptions of the Scheme in practice. For those whose views of the NDIS had not been tarnished by such issues, the capacity of the NDIS to deliver fulfilment, empowerment, and transformation to beneficiaries of the Scheme was particularly resonant, as discussion centred on the Scheme’s provision of essential things which able-bodied people take for granted. This remained intense and consistent across the groups: “There’d be people that without NDIS can’t shower every day, can’t feed themselves, can’t get to appointments. We talk about all these extra things, but for some people, it is just the basics, and that’s just a humanitarian thing.”

This respondent’s assessment of the Scheme was emblematic of broader sentiment: “[The NDIS] is about helping people thrive because it’s actually looking at what every individual person needs, making that available to them.”

Another common refrain was that the NDIS is a basic human right on par with universal healthcare, if not an inextricable part of that healthcare: “It’s just universal healthcare. It’s a must. It’s a human right. And we have the capital for it!”

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While support for the Scheme, in principle, was universal prior to showing respondents the video clip of disability rights advocate, Elly Desmarchelier speaking on the ABC’s Q&A programme, after viewing the clip, the intensity of support grew significantly: “She’s got an equitable existence now and she’s making the most of it! It’s incredible!” and, “It’s fantastic that she’s gained independence and she’s looking forward to life again!

This support was particularly notable among those without any experience of disability, who had not considered any of the issues presented in the clip prior to the group: “It’s something, as an able-bodied person, I overlook - just help with the practical day to day things that I would take for granted, like having a shower, doing the groceries. And the other thing that stuck out for me was [the NDIS] helping people be independent. That was a major thing! Just the fact that [Ms Desmarchelier] could only think of a future where someone else had to look after her [and] be responsible for her, whereas now she’s experienced transformation.”

As will be discussed further in the report, issues of the Scheme’s cost were secondary - if a consideration at all - to respondents. Primary for them - particularly after viewing the clip of Ms Desmarchelier - was the NDIS’s capacity to transform lives: “She was able to rejoin society, rather than being on the fringe. I couldn’t imagine being in a place where I’m dependent on somebody else, to have to do the basic necessities of life. To have your independence back, to have a better self worth and be part of society would be very uplifting.”

This sentiment may have found such strong support, regardless of cohort, due to the sense among respondents that people with a disability comprise a group that is inherently ‘deserving’ of support, without caveat.

As this respondent argued, “If I could describe [the NDIS] in one sentence, it would be to provide a safety net to those who have disabilities through no fault of their own, to give them access to the capital they need in order to go about everyday life and get the same opportunities as everyone else.”

This sense among some respondents that people with disabilities do not constitute a ‘status anxiety’ threat - to those for whom people are divided into ‘deserving’ and ‘undeserving’ in need - may have been key to the universality of respondent support for the NDIS’s existence.

This respondent’s assessment was representative of this subset’s view: “This [the NDIS] is for disabled people. But if we talk about the Centrelink benefits, the dole, that goes to people who actually can work. If you compare it, I think NDIS should be funded more than the other one, because the other assistance goes to people who can actually do things, but sometimes choose not to.”

Moral Duty, Empowerment/Fulfilment, and the “Safety Net”

The remarkable consistency of support for the NDIS, crossing all cohorts and demographic groups, and transcending political divides, was driven by three dominant themes:

the moral duty of all Australians to support those with disabilities, core to many respondents’ national identity
the capacity of the NDIS to empower people with disabilities to live fulfilling lives
(to a lesser degree) the provision of a safety net for all Australians who might succumb to disability in the future: a sense of, ‘there but for the grace of God, go I.’

Moral duty and Australian national identity

Respondent sentiment regarding the NDIS as a good use of taxpayer funds was inextricably linked for many with the idea that the NDIS is Australians’ moral duty: “Giving people access to help they need [is] the Government doing [its] duty.”

Many respondents framed their taxes funding the Scheme as a key practical manifestation of that collective duty, with a number going further and arguing that such tax expenditure is integral to the broader good functioning of Australian society.

As one Millennial male observed, “If I go through life paying tax, it goes towards the NDIS, and I’m never in that position where I ever have to claim, I’m completely happy with that. There’s a psychological safety net, but also, you have to incorporate everyone - all citizens - for a well functioning society.”

This respondent spoke further about the NDIS’s integral role in the fabric of a thriving society, which numerous other respondents from various cohorts echoed, framing the NDIS as a key good whose positive effects are felt well beyond the individual beneficiaries of the Scheme. This will be discussed later in the report in the sub-section titled, ‘Concentric Circles of Benefit’.

The Millennial male went on to say, “I would hate for a portion of society that might find it hard to get into jobs [to then be excluded] and I think being able to find a way of integrating them both from a capacity point of view and a community point of view is incredibly important. I’m imagining a world where NDIS is well funded. They’ve got the right checks and balances in place. If you hit those nails in the head, I think you’d be proud to be part of a country that offers something like this.”

This respondent compared Australia and its provision of the NDIS favourably to other countries in which such a Scheme does not exist: “Just going back to India and seeing family and seeing the system there - it’s completely different. Even the US… I think it’s part of our national identity that we’ve got care like this for people. Yes, taxes are high, but it’s critical to a well functioning society.”

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This sense of national pride in Australia developing a novel initiative such as the NDIS, was

a recurring theme among respondents, as was their willingness to fund such a scheme with their taxes.

Another respondent contrasted Australia’s provision for people in need with other countries thus: “Whenever I’m [talking to] friends and family and people that live outside of Australia, one of the first things they [talk about] is the universal health care. That’s one of the big factors for why I chose Australia. So I think that’s something great to be celebrated.”

In another group, a woman compared the dire situation her disabled sister would have suffered, had their family remained in Malaysia, with her current life in Australia: “[The NDIS] is really helpful. My sister has a great life [because] of it. I compare what her life could have been in Malaysia. We know of people in Malaysia with the same disability - severe autism. But in Malaysia, they won’t even let you out of your room and they won’t give you any support. So I mean, in comparison, this is such a blessing to have!”

For many, these sentiments tied into the notion of Australia as, “The Lucky Country,” with all the attendant moral responsibilities such ‘luck’ entails. As this respondent from the Philippines observed, “It is a very lucky country. The difference in terms of public health [between Australia and the Philippines] is like hot and cold. It’s a must for a progressive country like Australia to have NDIS. I feel like it’s the most humane thing by Government to do for its own citizens to try to take away one barrier that would otherwise add another stressor for vulnerable people. [Barriers like], how am I going to fund this? Or how am I going to be able to financially support this part of this condition?”

Other respondents echoed this sentiment: “Not a lot of countries have this [the NDIS]. So I think it’s a really important part of our national identity, where we, we are the lucky country, we look after everyone,” and, “Australia’s the lucky country and I think something like the NDIS really helps cement and establish that. In principle, it’s wonderful that the really vulnerable members of our society get the support they need with something like this.”

Even among those without experience of disability or other countries which lack disability support schemes, there was nevertheless a universal sense of the NDIS’s crucial role in constituting Australia’s moral fabric and integral to a positive sense of one’s national identity: “[The NDIS] is there for those who need the most help in our community and it’s an approach that Australian society [wasn’t] taking great responsibility for until [recently]. It’s been a massively important and positive step that we as a community have taken!”

As mentioned above, many respondents view the NDIS as akin to Medicare in the essential role it plays in Australian society, and at times see the Scheme as a critical component of universal healthcare itself.

Empowerment and fulfilment

While respondents’ sense of moral duty formed the foundation of their universal support for the NDIS in principle, the Scheme’s capacity to empower people with disabilities (and their families) to lead fulfilling lives equally animated and emotionally resonated with people in the groups.

As mentioned previously, the Elly Desmarchelier clip provided a powerful account that moved respondents deeply: “That was so powerful! At its core, [the NDIS] is definitely an amazing thing!”

This was a common refrain among respondents: “It was quite inspiring, just seeing how much the NDIS changed her life. Obviously, there’s a huge difference between before and after.”

Many respondents were struck by Ms Desmarchelier’s account of the transformative nature of a scheme which places the individual at the centre of it: “It’s a people based initiative with real lives that are genuinely impacted by the funds that they get. I know someone who is in that position, and his and his parents’ lives are just completely different. [It’s] genuinely life changing. The fabric of their day is just completely different because of the support that they get from the NDIS.”

The reactions from some respondents without any experience of disability were also instructive: they expressed a degree of shock as well as intense sadness that prior to the NDIS’s implementation, the situation had been so dire for people like Ms Desmarchelier. In response to her account of having to use an unsuitable wheelchair from Aldi prior to the NDIS’s implementation, one respondent remarked, “How heartbreaking that she had to have a wheelchair from Aldi before NDIS!”

Another respondent observed, “I thought it was very, very powerful. Extremely powerful! People absolutely do need this [the NDIS] and I would hope that that is what it’s trying to do - [to] give them a quality of life back again. That was the most powerful sentence of all. What’s life without a bit of quality - if you can’t go anywhere, you can’t do anything practically? You’re relying on [others], you can’t shower, you can’t eat - particularly in a wheelchair situation. It’s no point living to your 90s or 80s if you can’t do anything. What’s the point of living? They’ve got their life back again!”

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This respondent’s palpable excitement was echoed throughout the groups, across all cohorts, with one caveat that will be discussed further in the report: those with experience of barriers to Scheme participation found the clip a bittersweet reminder of the Scheme’s noble goals that - for them - are yet to be realised.

With that caveat, most respondents felt that Ms Desmarchelier - and people like her - could now enjoy independence, productivity, and a fulfilling existence which would have otherwise been impossible: “It sounded like [people like Ms Desmarchelier] didn’t have any kind of quality of life, and that it was completely transformative for them. They didn’t realise they could have a job, they could be independent. So there isn’t a financial price you can put on that kind of transformation for someone.”

Even among more conservative respondents, for whom employment and self-worth are inextricably linked, the idea that the NDIS is able to free-up people (participants and their family members) to work is significant: “Instead of being a burden on society, costing us money to support, they’re actually paying taxes and contributing to society and the economy. So it’s actually a win-win for everybody. They’re getting a sense of worth, they’re paying taxes. They’re having a semblance of a normal life and feeling like they’re some value to society.”

Regardless of political orientation, however, there was broad support for the notion that the NDIS’s intent is integral to fairness, “levelling the playing field,” not just for respondents, but for their families as well: “We’ve always had people who’ve had a need but [prior to the NDIS, that meant] the better off were able to afford that because they’ve got a higher disposable income. [Now] the NDIS levels that playing field. So as long as you can qualify, then you’re in as good a position to get care as anybody else.”

These themes of equity and opportunity were uppermost in the minds of respondents: “I think [the NDIS] is really important because it’s about equity - having the same opportunities as everyone else, despite your circumstances,” and, “Equity - where we’re making sure everyone has good quality of life [is key].”

Equity and opportunity were linked by a number of respondents to their opposites - i.e. in the absence of supports such as the NDIS, respondents pondered the consequences for those with disabilities: “Whether it’s a physical or mental disability, that can be very isolating. I think that it is an important Scheme because it can give these people independence, it can help them have a voice. I’d like to think it’s to help with independence and social assimilation.”

One respondent, whose ridesharing service is used by people on the Scheme spoke of the independence she has witnessed first hand that was a result of the NDIS: “I drive two young girls who are actually on NDIS. They are disabled mentally and physically but they are still independent, to go to work, go to school, go to education centres.”

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INFLUENCE WITH INTEGRITY

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Indeed, the choice that the NDIS affords was a subject that resonated for a number of respondents: “User choice sounds like an absolutely good idea. Everybody has their own specific needs, their individual circumstances,”and, “The big part about [the NDIS] was the actual participants get choice and more empowerment: so much more choice for the consumer!”

This sentiment was shared by this respondent: “I feel like NDIS plays a strong role in giving people choice and control. Often, when disability strikes, you lose those two things. And that person can choose to bring back that satisfaction, fulfillment.”

A number of respondents spoke of the tangible ways in which the NDIS facilitates choice and empowerment: “My sister’s got two kids with ADHD and autism. The NDIS do buy things like laptops [and] they do weekly things with a woman from some service and they go out and go bowling and stuff like that. Her school [also] gets funding to help prepare.”

Another respondent recounted, “If people can navigate [and] access it, there’s some really good supports in place. My friend whose son has autism was able to access funds to get a cleaner because [her son] gets really overwhelmed and terrified by the sound of the vacuum cleaner. So even just something simple, like cleaning her house, she couldn’t do when he was there. So being able to access a cleaner meant she could take him out of the home so he didn’t get distressed.”

This respondent went on to describe how the NDIS facilitated a support dog for her friend’s son as well: “They could even apply to get a therapy dog through NDIS, purchasing the dog and paying for all the training. So I think there’s some really fantastic things in place.”

Stories from people other than Ms Desmarchelier were also extremely moving for respondents, including accounts from loved ones whose lives had been transformed by the NDIS, or, for those without a prior connection to the NDIS, other respondents’ stories of the Scheme’s transformational potential.

This account from one respondent struck others in her group as particularly profound: “I know someone whose children inherited genetic disorders. One of them’s slowly deteriorating, the other one passed away. But [the NDIS] is a massive support for her because she could never physically even assist them in getting up and that sort of stuff. So it helped them getting the right chairs, the right support staff, and getting them into the right facilities. [It] even gives them a little bit of life and comfort. It’s a massive thing, helping the family live and cope - not just the person with the disability.”

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The “safety net”

A number of respondents cited the “safety net” aspect of the NDIS as particularly important, invoking a sense of, ‘there but for the grace of God, go I’ with regard to the role that randomness and luck play in disability.

As this respondent observed, “When we’re talking about disabled people, I think it’s important to remember, that can be any of us tomorrow. All it takes is a car accident or a disease that leaves us altered. So really, an insurance scheme that can look after people with a disability is [actually] looking after all of us.”

This sense of the safety net crossed cohorts: “[The NDIS] is a fantastic idea. You never know if you’re going to develop anything that will permanently disable you and you will need extra funds, or you may not have enough savings. You will need some sort of safety net to rely on.“

Another respondent spoke of the psychological aspect of the safety net the Scheme provides people she knows who have accessed it: “The lack of anxiety that they have [because of the NDIS] is transformative. That safety net is there for them. So I’ve got all the time in the world for the NDIS!”

This theme of the “psychological safety net” also crossed cohorts: “It provides us a bit of a psychological safety net, knowing that no matter what happens, the worst thing could go wrong tomorrow [but the Scheme would be there].

Others, however, were keen to point out that the NDIS should be about more than preventing people from ‘falling’, rather, it should bounce them back up, affording them a life that is “as normal as possible”.

Pushback on the ‘right to an ordinary life’

This discomfort among some respondents regarding the idea of the NDIS as a “safety net”, because they worried that such framing did not aim sufficiently high in providing empowerment and fulfillment to people with disabilities, was replicated and magnified when we presented them with the phrase, ‘the right to an ordinary life.’

Most respondents objected to that framing as an abrogation of the moral duty Australians owe to people with disabilities to provide them with the necessary means to live empowered and fulfilling lives: “‘Ordinary’ is a very ordinary word! We want people to have an extraordinary life. So I do have a problem with that statement,” and, “It should be about giving people what they need to support them as best as they can to live the most fulfilling lives.”

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The NDIS as a means of destigmatising and mainstreaming disability

A subset of respondents – particularly Millennial respondents – identified the destigmatisation and mainstreaming of disability as another important component of the NDIS. Just as others, described above, likened the Scheme to Medicare in its foundational nature to the good functioning of Australian society, there were those who viewed the establishment of the Scheme as significant in its capacity to raise awareness about, and demystify, disability through being a core function of Government in much the same way as the broader health system has become. These respondents therefore viewed the NDIS as framing disability as a core part of life and society in the same way that visits to the GP are normalised.

As this respondent argued, “The importance of NDIS is on a national scale. The existence of the NDIS plays an important role in the language and dialogue of disability. I think the very existence of it helps destigmatise disability to some extent - at least, I would like to hope so! Make it more known that this can strike anyone at any point in time, that we should all be allowed choice and control.”

Another respondent concurred, “I agree. Dylan Alcott winning Australian of the Year - all those kinds of things added together, destigmatises. So I think it’s really important that we have the Scheme and [that we’re aware of] a stat like one in five [people have a disability]: it could happen [to anyone].”

One respondent felt that such a statement both discounted the hurdles people with disabilities face while also underplaying the enormous potential people with disabilities have to lead extraordinary lives: “Someone in a wheelchair [is] not going to live an ordinary life. They’re not going to be able to walk because of NDIS funding, but you want to be able to give them dignity. We do see people with disabilities participating in Olympic events, so they can inspire people in their situations to reach out for those dreams as well. It may not be their original dream [but we] should still motivate people to find fulfillment and I don’t think there should be limits on that - just keep persisting and reach that ultimate dream.”

Other respondents had a darker view of the phrase. One with a significant disability remarked, “An ordinary life, working nine to five and then dying - it’s the shits. Support me so I can fulfill my best possible life and all my ambitions.”

Another respondent in the same group, but without a disability concurred, “Yeah, get them integrated, giving them that sense of connection and community. [It’s] not just about leveling the playing field, but how do you make it even better?”

Areas of Concern

“Horror stories”, access, and equity

While there is commitment to (even passion about) the idea of the NDIS, when it comes to the reality of the Scheme, respondent views were heavily influenced by the “horror stories.”

As one respondent noted, “We’ve all heard the horror stories” - the corollary being that they are not hearing the positive stories. This presents a central communications challenge: to supplant the prevailing narrative of stories entailing problems with access, equity, system rigidity, and rorting, with the accounts of the NDIS’s capacity for transformational change.

While the prevalence of NDIS “horror stories” from traditional and social media (as well as people’s own social networks) was a significant feature of respondent knowledge of the NDIS, there was, a degree of latitude afforded by some due to the Scheme’s newness - a sense that these issues are inevitable “teething problems” for an initiative of such scope and ambition.

“You always hear the horror stories, and the stories of people that miss out. [But] I didn’t realise how new NDIS was, it’s only been around for a couple of years so that helps contextualise it a little bit for me and understand how new it is.”

It is worth noting, however, that the Scheme’s ‘newness’ is conceived of by many respondents as constituting only a few years - many seem unaware that the Scheme is approaching its 10th anniversary. Awareness of the Scheme’s actual age could, therefore, militate against this latitude.

Importantly, these horror stories revolve around a central idea/fear that the people who need help the most are not getting it under the Scheme. Such stories therefore represent the blockers to the fundamental purpose of the Scheme: equity and opportunity.

Critically, in these horror stories, the ‘victim’ is not seen as the taxpayer, rather the victim is the Scheme participant who might miss out on the supports they need. While the ‘villains’ in these accounts are either the rorters taking advantage or those making poor decisions about people’s support needs, and there is a sense of latitude in that the Scheme is new and unique (“things always go sideways at the beginning”), there is nonetheless an expectation that “fine tuning” now must occur.

Again, this “fine tuning” is not about trying to reduce the cost of the Scheme per se, but about ensuring participants receive what they need and that fairness underpins the Scheme. As such, it’s about “accountability” and “checks and balances” to make sure the money is going to where it is needed most.

Or as this respondent framed the issue: “[Do] not cut the funds of the NDIS. Just make it better!”

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The horror stories which had most resonance for respondents did not centre on cost blowouts.

While a number did cite accounts of NDIS rorting by providers (and to a much lesser extent, Scheme participants), the truly resonant negative accounts centred on people with disabilities whom respondents felt had been unfairly brutalised by a Scheme that constituted a “bureaucratic nightmare.”

These accounts varied from media stories, to stories from friends and family, to the personal experiences of respondents themselves, trying unsuccessfully to access the Scheme.

One respondent stated, “I’ve heard a lot of negative things about the NDIS. I know it’s a fairly new initiative and it’s to help those with disabilities live a normal life [but] I’ve heard that it’s very difficult to be approved for NDIS funding [and that] it’s very difficult to keep that funding because there are constant reviews. I used to work in debt collection and I’ve heard stories of customers that have been relying on this NDIS funding, and then they’ve had a treatment or something, and then it’s been taken away.”

Too ill/disabled to earn the money required for diagnoses that would grant access to the NDIS

Some respondents, who suffer from numerous disabling conditions, spoke about the perceived impossibility of applying for the NDIS. Negative media stories about a difficult system instilled anxiety around the Scheme and combined with the Kafkaesque situation of their being too ill or disabled to earn the money to afford the medical specialists who would provide the diagnoses which would qualify them for the NDIS.

One woman, whose child has been accepted into the Scheme observed, “Because I’ve never had adequate mental health support, I don’t have the finances to seek mental health support. I don’t have the finances to get a diagnosis. But that doesn’t remove the fact I have a lot of support needs. So I’m stuck in a situation now where NDIS aren’t going to help me because I don’t have words on a piece of paper from a psychologist or psychiatrist explaining that I need it.”

This situation was echoed across cohorts: “Everything’s privatised. As a middle aged woman trying to get an ADHD diagnosis or [be] on a waitlist for autism, I can’t afford the assessment. There’s lots of barriers to treatment, it’s absolutely horrific, trying to understand and navigate [to] get any sort of help and support.”

One respondent with severe mental health issues had been so traumatised by other experiences with Government departments, including trying to get her mother into a dementia unit, that she decided she simply could not face even applying for the NDIS: “I’m just not strong enough to go through the hoops.”

One respondent had attempted to access the NDIS for his wife suffering severe mental health challenges which had made it impossible for her to work. She was, however, rejected, and the respondent spoke with resignation: “So now we’re a one income family”.

Variability and fairness issues regarding eligibility

It is notable that a number of respondents saw inequity and capriciousness in the approval process itself.

A respondent observed that while some deserving applicants had been rejected from the Scheme, “I’ve heard stories of other people that are basically getting some NDIS company to drive them to the airport to pick up a friend from the airport [when they] can actually drive and things like that. I think it’s about making sure the balance of funding goes to where it needs to be and there needs to be more regulation around it.”

Of note, however, this respondent argued for more flexibility in assessments to assess genuine need: “The assessment, in terms of actually who needs more funding, [should be] less black and white.”

As one respondent who works with children with disabilities observed, “Who gets help from NDIS and who doesn’t? That’s an area that I’m a bit confused by, because when I work with children, some of them do get funding, and then some of their parents say, ‘It’s so hard to get funding and we’re not allowed to use it.’ So I’m not sure how they decide who does and who doesn’t.”

Another respondent recounted the difficulty she had accessing assistance from the NDIS for her daughter who is on the autism spectrum: “12 months ago, my daughter received an autism diagnosis. Because she’s level one, I believe that we can’t really access the NDIS.”

Falling through the gaps of siloed systems

Others argued that there is an urgent need to rationalise and interlink disparate systems and services, such as Medicare, various welfare payments, and the NDIS, in order to minimise these accounts of people falling through the gaps, while avoiding unnecessary bureaucracy and waste: “I think [the NDIS] should be more linked with the broader health [system] for everyone so they don’t have to jump through the hurdles of getting a diagnosis. They should be helped to get into the right system to get the right diagnosis. Even if they don’t make the leap to get the funding, they should be able to access some sort of help and assistance, not just, ‘You don’t tick the boxes and go away!’”

Another respondent concurred: “We’ve got Centrelink. Okay: so for some people, they are on high medication, but they can’t get the assistance from Centrelink to get a healthcare card or pension card, because it’s not recognised. So the two systems should be working together to support the person who needs [help].”

It is notable that these issues of access and equity were the only elements that elicited any negative responses to the Elly Desmarchelier clip, as respondents contrasted her transformative experience with their perception that too many people are unable to access the Scheme due to bureaucracy and/or excessive costs: “It definitely changed [Ms Desmarchelier’s] life. She’s highlighted that very well. For some people, they don’t have that. So it doesn’t work for everybody. Some participants need a nominee that can [advocate] for them. [Ms Desmarchelier] got a better advantage but people who can’t [advocate] for themselves, it is hard because they’re not getting the funds.”

Similarly, respondents living in regional areas remarked that Ms Desmarchelier likely enjoyed ease of access to diagnosis and care because she lives in a major city and that such services are not equitably distributed across the country: “I think the clip shows exactly what it should be about: the optimum goal. [But I thought to myself], ‘Oh, I bet you’re in a central city and you’ve got a great support coordinator. You’re definitely not regional or rural Australia. I reckon for at least half [outside the cities, they] are just still scraping to get basic needs.”

Even those respondents with disabilities who had been accepted into the Scheme and were enjoying its many benefits identified these access and equity gaps: “I live with a chronic disability. And two years ago, I had an occupational therapist, who really fought for me. So now I receive six hours of support every day. But it is very easy to see where the glaring gaps are!”

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Another respondent spoke of the challenges of navigating the system for CALD families: “It is

stressful trying to navigate through it. My family is non-English speaking background. We had the nightmare of having to go through a lot of bureaucratic red tape. So that part is very stressful - especially when you’re waiting for approval, or not even sure if you’re gonna get the approval. It’s as if you’re waiting on the lottery, and it’s just luck, if you end up getting someone actually giving you the ticket or not.”

Of note, however, was the significant subset of respondents - albeit, those without disability who had never interacted with the system - who treated such negative news stories about the NDIS with a degree of scepticism, due to a broader distrust of the news. As this respondent observed, “Whatever I hear about the NDIS from the media is always going to be the 1% stories - the nightmare stories. It’s going to be the headline making stories. It’s never going to be the reality of the NDIS.”

Respondents from other cohorts expressed similar sentiments. One, after watching the Desmarchelier clip stated, “I couldn’t help but feel maybe the media has skewed my opinion of [of the NDIS] slightly, because media would only ever [give] you negative stories. In a perfect world, we should be hearing 95% positive, important stories, and 5% being like: we need to work on things. [There is] the 80%, the 90% of the people you don’t hear about, but benefit every day from it.”

Or as this respondent observed, “The media does a great job of telling us when something’s gone wrong. It’d be great to see some advertising or just some positive stories, like how the NDIS transforms someone’s life.”

It must be emphasised, however, that this scepticism was the sole preserve of respondents without any connection to - or experience of - disability. For those respondents who did have a connection to/experience of disability, negative news stories often acted as a powerful disincentive to even attempt to apply for the Scheme or confirmed negative accounts they had either heard or experienced first hand.

System rigidity

Key to many respondent concerns regarding access and equity issues with the NDIS is the perception that the systems in place for Scheme approval are too rigid, precluding people who are deserving of the Scheme’s benefits from obtaining them.

As this respondent observed, “I think there needs to be a lot more outside of the square thinking in the approach to something like this because [with] disabilities, you can’t pigeonhole everyone into [just] 10 different boxes and say, ‘Okay, you’re here. This is what your funding will be.’”

This sentiment was echoed across cohorts: “I guess it comes down to criteria and becomes very black and white [regarding] assessment - who gets the funding. This person happened to be a winner for whatever reasons, this person doesn’t get accepted], for whatever reason, just because of some nuancing.”

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Rorting and cost blow outs: respondent concerns remain centred on equity and access

Nearly all respondents raised (unprompted) - or were aware (once prompted) - of the issue of rorts within the NDIS - primarily regarding problematic providers. This extends from outright unethical (even “criminal”) rorting through to providers who simply charge the maximum amount possible for a service, regardless of the scope of the service actually provided:

“From a lot of press, I feel like that there’s a lot of criminal organisations that are rorting it. [Perhaps it’s] a small percentage, but it sounds like people are being extorted - especially those with a disability that can be the most vulnerable.”

Or as this respondent observed, “My son receives funding from the NDIS for speech therapy and occupational therapy and after he got approval from the NDIS, they jacked up their fee by 30 bucks per session.”

When these rorts were discussed, there was some degradation of social license for the Scheme among certain respondents; however, they were adamant that this degradation should not result in funding cuts or the scrapping of the Scheme, but rather the streamlining of processes necessary to rein in problematic practices.

It is also notable that many respondents considered the rorting of Government benefits an inevitable by-product of any provision of a social safety net and therefore, any social licence degradation as a result of problematic practices is, therefore, minor.

Indeed, the costs themselves were posited as secondary to the moral blight of rorts which respondents viewed as compromising people’s access to much needed support. The most fervent objections to rorts centred on the threat they posed to the Scheme’s existence and its capacity to help those most in need.

As this respondent observed, “The cost blow-out isn’t so much the issue. All these stories about people rorting the system have now quite negatively impacted my view. Before this meeting, I wasn’t overly aware of that. So now [I think] this seems to be quite a large problem. And I know that it’s not necessarily just the NDIS system. I know that it’s pretty systemic across quite a lot of government funding. [But I’m] not feeling as great about it, as I probably initially did because the system isn’t working as intended.”

Another respondent echoed this sentiment: “[The rorts have] negatively impacted my perception of this social licence, because I have high expectations for the Government. They should have structures in place to administer that money for the people who need it.”

One respondent with severe mental health challenges who has accessed the Scheme spoke of its critical role in keeping her alive due to the isolation her condition otherwise causes (“without my funding, I wouldn’t be here today - I would have spiralled out of control”); however, she noted that the system had become less user-friendly, due to crack-downs on fraud: “It’s getting worse with the recent audits, because so many people are getting away with ripping the system off.” She described how these audits have become much more stringent but this has rendered the experience of the Scheme much worse for her, while acknowledging, “[The NDIS] is a massive undertaking from the Government and they’re learning as they’re going. People can claim really good dollars [from the Scheme].”

Some respondents, primarily from cohorts comprising women under the age of 40, viewed the rorts as an inevitable consequence of privatised services coexisting within a publicly administered system: “The fact that all of these private sectors have popped up around the NDIS kind of indicates to me that the Government has failed in that sense. The private sector shouldn’t need to step in to such a public initiative. The government is giving out money [and] the middleman shouldn’t exist.”

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Discussion of rorts often prompted respondents to call for greater transparency and accountability

Discussion of rorts often prompted respondents to call for greater transparency and accountability: “I don’t think there’s a lot of transparency from the Government. How does it work? How does the funding for it, and the budgeting work?” and, “Make it transparent for taxpayers to understand how the Government’s spending money.”

There are , however, two conundrums here.

Firstly, respondents were particularly animated by stories of those unable to access the Scheme because of having to repeatedly jump through bureaucratic hoops (e.g. the idea of parents having to repeatedly “prove” their child is still disabled was particularly distressing for some) in order to get or maintain funding: “You seem to have to do the same thing over and over again, to prove that your child has a difficulty. Life’s probably hard enough if you’re in that situation without having to do that all the time!” Thus, the capacity of ‘transparency and accountability’ mechanisms to worsen problems around accessibility was raised. Indeed, respondents were quite clear that whatever happens in the reform space around NDIS must not make life harder for those who need the Scheme.

Secondly, open discussion of the prevalence of rorts primed respondents to question the efficacy and social license of the Scheme where they might otherwise have not considered the issue. There is a risk that by talking about “transparency and accountability” – in the wrong way – we reinforce the ‘truth’ of rorts and Scheme failures.

Furthermore, respondents’ calls for transparency generally occurred after discussion of rorts and cost blowouts - calls for greater transparency rarely emerged unprompted. So while there may seem, qualitatively, like there is appetite for greater transparency, an overemphasis on problematic practices may prove counterproductive by reinforcing negative perceptions. Instead, a number of respondents spoke of their desire to see more statistical information about how money is spent on the NDIA website, in an easily accessible format. Such information - about how the funding benefits Scheme participants - would likely satisfy those advocating for greater transparency from the Agency. That is, greater transparency around its impact/benefit, not just its operation.

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Cost Blowouts

Patchy awareness and pushback against cuts

Awareness of NDIS cost blowouts specifically was generally quite low among respondents. Only a few were aware of the extent of the issue, having heard about it from media reports.

Once made aware, the quantum of the budget blowout did concern some respondents – particularly among those already anxious about their personal economic circumstance and the direction of the national economy. For this subset, a cost overrun in the order of 50% was not acceptable, especially in the context of massive government debt following COVID. This impacted the social licence to some extent by drawing focus towards “the competence of the people running the program” and the efficient/equitable use of money within it.

However, once again, the solutions posited did not involve scrapping the Scheme. Rather, it prompted calls for better accountability to ensure every dollar is going to where it’s needed. Respondents wanted Government to “find the cost efficiencies”, where efficiency means the people who need the most, get the most. They then wanted to hear the stories of “the positive ROI” – being the stories of transformation and benefits to the lives of NDIS participants (as mentioned earlier, this is missing in the discourse to which most respondents are exposed).

Of note was the intensity of the pushback from respondents in all cohorts against cutting funding to the NDIS as a panacea to the blowouts. While a number of respondents, as described above, called for better regulation and oversight to prevent rorts, many other respondents were adamant that such a new scheme could not be expected to accurately judge the quantum of funding that would actually be required: “From what I’ve heard in the news, I think the NDIS overall has been severely underfunded,” and, “Anyone who thinks that the NDIS should be cut, or that people get too much money from the NDIS, just don’t know anybody who accesses the NDIS!”

Or as this respondent observed, “Initially, things are a little bit more expensive as you get them set up and working - understanding how much you actually need.”

When asked whether the cost blowouts signified an ‘unfixable mess or teething problems,’ the response was unanimous: rectify abuses of the Scheme, but the Scheme itself is sacrosanct: “It does provide a valuable service for those who do use it correctly. So cutting funding to people who are in need [is] not great,” and, “Talk about cutting the funding to the NDIS made me feel really uncomfortable because I feel like we spend so much public money on other things and this is an area where, if anything, NDIS probably needs more funding!”

As mentioned earlier, these respondents often cited, unprompted, the novelty of the Scheme and its lack of precedence around the world as leading, inevitably to ‘teething problems:’ “We’re the first country to do this Scheme So [it is difficult to be] coming up with a budget for it without knowing anything about like costs.”

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Of note, was the determination so many respondents displayed when searching for reasons other than rorts and fraud for the cost overruns - that is, seeking to minimise any argument for cuts.

Inflation and the rising cost of living was regularly cited as a key driver of increasing costs: “There are a lot of factors that are out of our control. [For example,] the CPI was really significantly increased.”

A related respondent hypothesis involved the labour shortage among allied health professionals, thus driving up prices: “There’s not enough services for everyone and that could lead to the cost blow up. Because if everyone’s inflating their costs by 20%, then that will add up to a few billion if you think about all the people who provide services.”

Others attributed the blow outs to factors such as the destigmatisation of many conditions, leading more people to seek treatment and support, as well as an aging population: “On gut feeling, I think [there is an] increasing population [seeking support] - a lot of people [are being] diagnosed with mental illnesses more often. [And] this might affect everyone, because we get old and are getting diseases. So maybe it’s just that we’re qualifying more because of this.”

This sentiment was echoed by another respondent: “I think there’s a lot more awareness about what issues need support. And I’m also thinking about the change in conversation and the change in awareness for everyone across the board. If I were to have children, I think I would be so much more attuned and aware to their needs, and perhaps be more willing to seek support, if it was relevant. But I think about my own parents, and I think they wouldn’t have done so. And that’s only 30 years ago! So along the way, there’s just been a huge shift in people understanding what the spectrum of disability is, and what support looks like, which is a conversation that we might not even have been having to the same standard, even five or ten years ago.”

Or as these respondents succinctly stated, “It just highlights that there is a bigger need than we anticipated in this area,” and, “[There has been] a lack of anticipation and preparation for growing need.”

Indeed, some respondents pushed back on the assertion that rorts could be behind the enormity of the cost-blowouts: “Billions and billions of dollars of rorts? You can’t blame it all on that side of things! [They] might not have accounted for the aging population. But I think no one is really safe from the increasing costs of everything. Labour is getting more expensive. Products are getting more expensive, getting things to Australia is getting more expensive. So I don’t think any industry is necessarily safe from huge cost blowouts because of all those things.”

On a related note, a number of respondents cited COVID as another factor in driving up costs: “I think the pandemic is partly responsible - the circumstances surrounding the pandemic are the cause of these cost blowouts. [There are] people suffering long term COVID symptoms, people whose lives will never be the same, people maybe who already had disabilities that just got worse, or maybe just led to many other types of sicknesses from that.”

As mentioned above, for many respondents, there is an in-built assumption that cost blowouts are an inevitable feature of any Government programme, and that such expenditure has inherent social licence when it is directed to people with disabilities. On numerous occasions, respondents declared their preparedness to pay extra tax if it meant, “making a difference to somebody’s life.”

Or as this respondent framed the issue, “For me, it comes down to the reason for the cost blowout: if the NDIS is very poorly run [with] money being thrown in all the wrong places, then yeah, [that] would degrade the social licence. But if it is just a cost blowout [because of] more people needing support, then that’s different and doesn’t affect it.”

This was a common sentiment among respondents: “I think, obviously, it is a really high priority and we shouldn’t be looking to cut down in terms of where people need the money. But I think what we should be looking at is ways to streamline and make the NDIS Scheme more efficient, so that you’re getting those savings without removing the outcomes.”

A significant subset of respondents specifically identified the NDIS as worthy of whatever taxpayer money would be required: “As a taxpayer, you see a significant chunk of your paycheck goes away. And at the time it hurts, but you can really rationalise it to yourself: someone who needs this a lot more than I do is getting it!”

Or as this respondent observed, “It’s as necessary as public transport!”

Of note, a number of respondents specified their preference for their tax dollars to go to the NDIS over defence spending. “My brother in law is part of the Army Reserves and hearing his stories about how much the Government spends on Reserves shocks me. I think we’ve missed a lot of money there!” and, “[Regarding] the Defence budget, if they’ve got money for that, they should always have money going towards health!

Or as this respondent summed up the broader mood, when discussing cost blowouts, “My mind doesn’t jump to being concerned about tax raises: my mind just jumps to being concerned that people won’t be getting what they need!”

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‘Economic multiplier’ arguments: either a side issue or a prompt for negativity

It is within this frame that we might best appreciate the failure of the ‘economic multiplier’ argument to resonate with respondents as a core justification for the NDIS.

While there was appreciation for the savings and efficiency that resulted from taking pressure off the hospital system (as evidenced by Elly Desmarchelier’s account of the NDIS allowing her to avoid stays in intensive care due to preventable infections), most respondents were adamant that economic benefits accruing from the NDIS were secondary to the human reasons for it.

Interestingly, when talking about the importance of the Scheme, beyond references to helping disabled people be work-ready, the notion of an ‘economic multiplier’ justification did not really occur to respondents. When presented with that idea - i.e. that the NDIS delivers an economic benefit beyond its cost (through employment, workforce participation, etc) - there was a recognition in some quarters that that would be a good story to tell (with none having thought of it before being prompted).

However, using an economic multiplier narrative precipitated an economically-minded response. That is, respondents then (for the first time) raised concerns about the economic “efficiency” of the Scheme. This included the rorts discussions, but also the idea that the NDIS was creating “industries within industries” - creating layers of services/activity (e.g. an industry around just helping people navigate the NDIS) that do not constitute a good use of taxpayer money, perhaps even taking that money away from where it is needed most.

Priming respondents to talk about economics alone provoked a rigour and mindset that was actually less favourable to the Scheme than discussing the broader, human narrative of transformational change: “All policies will have positive and negative externalities. But you can’t cater to that: you’ve got to stay true to purpose. What is the purpose of the NDIS? And what is the impact on it to those who need it? The only success should be if the people on the Scheme are getting the value they need. If it’s creating some jobs on the side, that’s not [the main point].”

Another respondent concurred: “If you talk pure economics, [are you] just creating the industry within itself, where you’re taking money from taxpayers, [and] giving it to people that don’t really need things? And potentially, you’re creating jobs that aren’t really needed. You’re creating this circular effect, where it’s essentially just taking money [from] tax to generate jobs that aren’t necessarily needed - as opposed to giving it to people that really actually need it.”

Similarly, while some respondents mentioned people with disabilities entering the workforce as part of a fulfillment narrative, they did not raise economic impact/benefit as being of primary importance. When prompted, many rejected that narrative as being a side-benefit of the true “return on investment” - the human benefit/story: “It’s not economic output!”

Ironically, one respondent, an economist, used an economic argument to push back on the use of economic multiplier frames to analyse the worth of the Scheme, speaking of “opportunity costs” - meaning: what else is Government going to spend money on that’s more important than the NDIS and what are the consequences of not spending that money? There was broad assent for this position as another respondent remarked, “We’ll look back fondly in 30 years and be proud of the NDIS, like we’re proud of Medicare”

Of note, in all 16 groups, only one respondent (from the Progressive Middle cohort) cited, unprompted, the economic multiplier aspect as a key benefit of the NDIS: “Since it was introduced, it’s created an economy in terms of new businesses providing services to the disabled that were never that weren’t there before. That was long overdue.”

Importantly, respondents’ knowledge gaps regarding the actual cost of disability care left the most room for rorts and waste discourse: “People being fraudulent would be my gut feeling [regarding cost overrun]. I can’t really think of what else would be costing that much money other than people trying to be sneaky.”

Because of the remarkable consistency across cohorts in support for the NDIS in principle, regardless of cost blowouts, in the latter groups, we commenced ‘stress testing’ respondent support. We did this through priming respondents by asking about their own economic situations and associated stressors of the cost of living crisis. We then asked them to speak about their thoughts regarding Government waste. It is notable that even under such conditions, respondent support for the NDIS remained emphatic, with no appetite for cutting funding to the NDIS. This resolve was significantly strengthened by Ms Desmarchelier’s account: “I think [Ms Desmarchelier] just reiterated what we said before: not to cut the funds of the NDIS. But just make it better!”

However, the stress test did result in economic arguments being more readily accepted. Within this context, after viewing the Elly Desmarchelier clip, respondents viewed the NDIS as affording those on the Scheme, as well as their carers, the capacity for economic independence and the opportunity to be economically productive; however, this was very much an extension of the empowerment/fulfilment narrative.

It is noteworthy that in this context, there was no need for an economic argument to be made explicitly, as respondents were able to make that connection themselves: “There is economic benefit if you’re helping people with disabilities become productive members of society and, you know, get jobs rather than be on a disability support pension.”

Concentric circles of benefit

Indeed, it appears that the way in which the economic arguments for the NDIS may be best prosecuted is via its tacit acknowledgement through the notion of ‘concentric circles of benefit’ - i.e. the NDIS’s ability to unlock the capacity of carers, as well as those with disability, to contribute to society, while also removing pressures from other support systems, such as hospitals; all of which deliver net benefits to society at large.

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The capacity of the NDIS to transform the life of the individual with a disability, delivering empowerment/fulfillment also liberates their loved ones from caring responsibilities and economic hardship, all the while avoiding costly and traumatic hospital stays due to NDIS support.

As this respondent observed, “How much health care has been saved [by the NDIS]? How many of those people are able to return to work or their carers were able to return to work? Because unpaid care is a huge part of the economy that doesn’t have a value!”

This sentiment was echoed across cohorts: “I’m thinking [the NDIS] is not only for the disabled people, but also for those around them: the carers, family, friends who are supporting [them] - make sure that they are getting support as well!”

One father spoke of the hopes for his son that the NDIS had afforded: “You’re helping people with disabilities become productive members of society and get jobs rather than be on a disability support pension for their whole life. Look at my son: he’s got autism.” He went on to speak of friends in similar situations whose children had thrived because of early intervention therapies, “By the time they’re about 10, they’re pretty normal and they go on to have normal lives. So that’s the hope with my son.”

A respondent from a different cohort spoke of the broader implications for families of people with disabilities: “I think [the NDIS] is important, because someone may actually be able to get back into the workforce has prolonged benefits, not just for them, but their family and the wider economy. [And regarding children on the autism spectrum] - their being able to get support means their parents or their mum can probably go back and work, which is ultimately better for the household, economically. It also breaks the cycle of being stuck or not able to work or long term unemployment or even long term poverty because you are able to work, because you’ve got that support, or somebody in your family can work because you’ve got that support.”

Indeed, these concentric circles of benefit were most acutely - and universally - appreciated by respondents after they were shown the Desmarchelier clip: “I love the comparison from before and after the Scheme [of Ms Desmarchelier’s life]. But I think the fact that the independence [afforded by the NDIS]… that means the money’s well spent. There’s places where you could improve it, but overall, it sounds like it was transformational!”

This was a common sentiment: “It’s amazing to see how her life has transformed. She has gained so much independence!. But the thing that stuck out to me the most was the fact that she had to go to the ICU so often [before accessing the NDIS]. That’s something I could not have seen happening - it’s something we all take for granted [as a person without a disability]. But the NDIS is just enabling her to live a proper life with dignity, and not having to pick up on resources that could be better spent on all the people that also need the ICU services. It is mind blowing!”

These economic benefits were clear to people across cohorts without having to be explicitly articulated: “If providing the NDIS takes pressure off our hospital system, if that

Trusted Sources of Information: From Whom Do Participants Want to Hear?

When asked from whom respondents wanted to hear regarding the NDIS and whom they would trust, there was a clear consensus that Scheme participants were chief among those whose accounts were important. Similarly, a number of respondents wanted to hear from their loved ones/carers as well - namely, people whose lives are directly affected by the NDIS: “The participants and the people receiving the funding - I will listen to them!”

There was no desire to hear from the media, or NDIS providers who are seen to come with an implicit “conflict of interest”.

Importantly, many respondents said that they would indeed trust information on the NDIS website itself and expressed a desire for quantitative information to be readily and easily available on the home page that details the ways in which the scheme transforms the lives of participants. While such information is currently available, we note that it may currently be difficult to find and could benefit from being made more easily accessible for those seeking such information.

While some mentioned the ABC as a trusted source, many said that they would prefer their information unmediated and direct from the NDIS site itself. “[I would trust] Government websites and also people who have experienced using the system themselves.”

Of note, many younger respondents specified their own social networks as trusted sources of information and described a tendency to avoid traditional news sites. Indeed, many respondents of all ages, as described above, expressed significant scepticism about the accuracy of news: “I would not trust anything from the Murdoch media about the NDIS under any circumstances. Like everyone said, I would trust firsthand knowledge the most, but it’s not what’s most readily available to me. So Government websites or the ABC would be my go to.”

As mentioned above, however, this scepticism of the media is far from absolute. When news stories confirm the accounts respondents hear within their social networks - or indeed their own lived experience - of problematic aspects of the Scheme, such news items serve to entrench negative sentiment about a Scheme which, in principle, all respondents support emphatically and wish to see work as intended - as a fulfillment of society’s moral duty and a manifestation of the best of Australian national identity.

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