Introduction
A central aim of the NDIS is to provide equity of access to disability supports. Ensuring that those who are at the margins of eligibility for the NDIS are adequately supported is also critical. Issues of fairness and equity have arisen directly and indirectly in several other parts of the evaluation, especially when looking at choice and control, unmet demand, wellbeing and participation. In many instances the evaluation finds that the NDIS has improved the lives of a large majority of its participants, but at the same time it has left several minorities either in their pre-NDIS situation, or even in a worse situation. In many instances we find outcomes that could give rise to justifiable feelings of unfairness and inequity.
In this section, we present quantitative and qualitative evaluation evidence that relates to the specific theme of fairness, equity and access. Specifically we examine the evaluation evidence around the experience of determining eligibility to enter the NDIS and navigating NDIS processes and procedures. We also examine experiences of, and satisfaction with, the NDIS review and dispute resolution processes. Finally we assess the extent to which the NDIS has contributed to equity and fairness, paying particular attention to the question of whom the NDIS has worked well or less well for, and the system’s safeguards for when things go wrong.
Eligibility and Navigating the NDIS System 8.2.1 Comparing the NDIS to previous systems – Evidence from large scale surveys -
People with disability over the age of 15 years in the trial group were asked in wave 1 to compare aspects of their past (pre-NDIS) experiences with their experiences in the NDIS. Specifically we asked them the question ‘Compared to before the NDIS, does it now take more, less or the same amount of time to...’
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get the supports that you need
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do the necessary paperwork to get the supports that you need
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find out where to get the supports that you need (Appendix Table A8.1).
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The same questions were asked of the carers of NDIS participants (Appendix Table A8.2).
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The same questions were replicated in wave 2, but here we asked NDIS participants and their carers ‘Compared to last year, does it now take more, less or the same amount of time to...’ (Appendix Tables A8.3 and A8.4).
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The wave 1 quantitative data found that with regard to support arrangements and provision, the NDIS has impacted on how long things take for the majority of NDIS participants and their families and carers (Appendix Tables A8.1 and A8.2).
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In wave 1 NDIS participants were more likely to report that under the NDIS it now takes less time rather than more time to find (33 per cent) and get supports (30 per cent).
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In contrast, more than a third of carers (38 per cent) reported that it takes around the same amount of time to find and get supports under the NDIS as it did previously.
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Both NDIS participants and their carers reported that it took more time under the NDIS rather than less time to complete the necessary paperwork for supports (36 per cent and 43 per cent respectively).
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The majority of both NDIS participants and carers experienced little change over the time they have been in the NDIS in terms of how long it takes to gets supports, do the necessary paperwork, and find out where to get supports (Appendix Tables A8.3 and A8.4).
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Sixty-eight per cent of NDIS participants, and 12-13 per cent of their carers report a lessening of the time taken to gets supports, do the necessary paperwork, and find out where to get supports in wave 2. In contrast, a higher proportion (24-27 per cent and 28-30 per cent respectively) reported an increase in the amount of time taken to gets supports, do the necessary paperwork, and find out where to get supports in wave 2.
8.2.2 Has eligibility and navigation within the NDIS changed overtime? – Evidence from large scale surveys -
Further analyses were conducted regarding the changes that occurred in the timing of support arrangements between wave 1 and 2. Appendix Tables A8.5 - A8.7 document these changes for NDIS participants. It enables exploration (among those who participated in both waves of the survey) of whether people who reported a bad/good outcome in the first wave move on to a better/worse outcome in the second wave.
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Those who report decreased time pressures between waves 1 and 2 are in the top right part of the table, and those with increased time pressures in the bottom left. The diagonal from the top left corner down to the bottom right corner in the table, includes all those with no change.
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Of concern is that over a quarter of NDIS participants who reported in wave 1 that it took them less time to find (29 per cent) and get supports (29 per cent) and do the necessary paperwork (28 per cent) in wave 2 now reported that it now takes more time to do all these tasks.
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A much smaller proportion of NDIS participants (8 – 9 per cent) who in wave 1 felt that their supports took more time to arrange under the NDIS now reported that these took less time.
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Appendix Tables A8.8 - A8.10 show the changes that occurred in support time pressures between wave 1 and 2 for carers of NDIS participants. Similar to the tables relating to NDIS participants, those carers for whom time pressures have decreased between wave 1 and 2 are in the top right part of the table above the diagonal, and those with increased time pressures in the bottom left, below the diagonal. The diagonal from the top left corner down to the bottom right corner in the table, are those with no change.
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For those carers who reported in wave 1 that organising their support arrangements took less time under the NDIS, 28 per cent now felt it took more time to get supports, 25 per cent to do paperwork or find out where to get supports.
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In contrast, carers who in wave 1 felt that their supports took more time to arrange under the NDIS, nine per cent now felt that it now took less time to get supports, 10 per cent to do paperwork and 13 per cent to find out where to get supports.
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Overall the Appendix tables indicated the following17:
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Thirty-five per cent of carers reported an increase in the time it takes to gets supports between wave 1 and 2, 22 per cent report decreased time and 42 per cent report no change.
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A similar proportion of carers reported an increase (28 per cent) or a decrease (30 per cent) in the time taken to do the necessary paperwork between wave 1 and 2, and a further 42 per cent reported no change.
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Thirty-seven per cent of carers reported an increase in the time it takes to find out where to get supports between wave 1 and 2; 23 per cent reported decreased time and 40 per cent reported no change.
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In wave 2, NDIS participants and their carers were asked how informed they were about how to access funded disability supports. Thirty-one per cent of all NDIS participants felt very well informed and had all the information they required (Appendix Table A8.11). A slightly higher proportion (35 per cent) considered themselves to be informed but requiring more information. Of concern, nearly a fifth of NDIS respondents did not feel well informed at all and did not know where to find information about funded disability supports.
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The carers who were surveyed in wave 2, reported higher levels of understanding of how to access funded disability supports compared to the NDIS participants themselves (Appendix Table A8.12). However, while over a third (36 per cent) of carers felt very well informed about access to funded disability supports, half of respondents (50 per cent) reported that they needed more information. A minority (12 per cent) of carers felt they had very little understanding of how to help the NDIS participant to access supports and did not know where to find the information.
8.2.3 Experience of entering the NDIS and system navigation – Evidence from in-depth qualitative interviews
The perspective of NDIS participants and their family members or carer
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The experience of entering the NDIS varied greatly, with some people with disability and their family members or carers describing the process as positive and straightforward, while others commented on various difficulties they encountered.
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Respondents who had an easy transition into the NDIS were generally those who had a service provider or paid advocate who assisted them with enrolling in the NDIS, had other family members already in the NDIS, or were seeking services for the very first time.
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The most commonly reported difficulty related to a lack of responsiveness by the NDIA. Many respondents had to follow-up first contact from the NDIA due to problems with receiving paperwork or having paperwork mislaid and needing to complete multiple applications. Difficulties communicating with the NDIA more broadly, and frustrations resulting from this, were commonly described.
Our forms kept getting lost and they’d be sent to the wrong office, for some reason we kept being put through to the national office, they’d try to direct us to [local office]… Yeah, it took three or four goes, in the end we photocopied the forms and actually drove them down to the office. (D17C W1)
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The complexity of processes and paperwork to establish eligibility for the NDIS and undertake planning was also frequently noted. Respondents reported frustration with additional assessments being needed to establish a diagnosis for eligibility for the NDIS or for the funding of specific supports. They described that previous assessments done by agencies such as Centrelink were given to the planners, but these were often disregarded and repeated, costing respondents time, money and frustration.
The NDIS decided that everyone [who was transitioning into supported accommodation] should have an occupational therapy report as to what their abilities and capacities were. So we had to have that done and then there was an argument about whether that was a good assessment, and what was done as a result of that assessment. It didn't do anything about looking at goals and outcomes. (B10C W1)
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Respondents reported that the NDIA staff members’ understanding of their disability and needs influenced their transition into the NDIS. If staff were knowledgeable of these, respondents described feeling supported. In contrast, others had met with NDIA staff whom they perceived as having little knowledge about their disabilities. These situations had a number of implications for transition into the NDIS, including the need to have multiple meetings with different NDIA staff, extended uncertainty over eligibility, and contributed to concerns over whether or not support needs would be adequately met under the NDIS.
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Wave 2 findings suggested NDIS participants and their family and carers had improved understanding of the processes and concepts/language used by the NDIA. Consequently they were becoming more confident in using this knowledge in interactions with NDIA staff.
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Despite this, difficulties communicating with the NDIA were still apparent, with examples given of continued ‘clumsiness’ around processes for communication with the NDIA. Respondents expressed particular frustration about phone calls being relayed through the National Office, the misdirection of paperwork, and confusion relating to the transfer of families to new offices.
If you don’t work it out yourself, that’s your problem. Because if you ring up you’ll ask the person there, and they say I don’t know anything about that because I’m only the receptionist. And then they can’t put you on to anybody who does know. Same as when we went into the planner, he doesn’t get there and say when you’re self-managing, I’ve had to learn everything myself by reading and doing it. (A11C W2)
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The NDIA’s provision of information via electronic newsletters was questioned by many NDIS participants. There was concern that many people with disability did not have access to computers or have the time to sort through emails, or open/read attachments.
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The decision to co-locate new offices with other government services was problematic for some respondents. For example, the presence of a security guard upon entering new NDIS offices which had been co-located with Centrelink, was both confusing and off-putting.
I'm not going to go in there and do anything bad, but it doesn't exactly fill you with confidence either, you know. (D11C W2)
The perspective of people with disability not participating in the NDIS
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Non-NDIS participants were broadly divided between those who (1) had not applied to the NDIS, and (2) those who had submitted an application for eligibility to the NDIS. Appendix 8.2 provides further information about why some actively chose not to participate in the NDIS; and the experiences of those who were not part of the NDIS either because of circumstances or having been deemed ineligible.
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For those who made a formal application to the NDIA to determine eligibility for the NDIS, a range of issues were reported.
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Lack of guidance around the application process contributed to incomplete applications and decisions of ineligibility. In some cases, respondents considered that were hindered by not knowing the ‘language’ of the NDIS.
You have to have the special code words to go through their programme, you've got to say it's - oh, what is it they told me? Someone told me ‘psychosocial disability’ or something... so you can't even say what it is as a mental illness, you have to know these special code words, which makes it hard for anyone to get through because, if you don't know the special code words, you can't even get through the front door, so to speak. (A11 NP)
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Confusion existed about the relationship between the NDIA and Centrelink for those respondents who had a Disability Support Pension. Some assumed automatic eligibility to the NDIS for those with a pension, while others expected that reports submitted to obtain the pension would be accessed by the NDIA to determine eligibility for the NDIS, particularly in context of co-located offices in some trial sites.
You know, they can access all my Centrelink information and reports which, you know, date back to high school even, because I used to be on the disability pension, so they have all the reports from school about everything. (A11 NP)
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A perception that NDIA staff lacked knowledge and understanding of disabilities led some respondents to believe that their personal situations were not being considered; others (in particular those with a mental health diagnosis) felt they had to work much harder to establish disability and that their problems were downplayed by NDIA staff.
Not only did I have to answer the questions like ‘Who gets you out of bed in the morning?’ to which I replied ‘I do’ and the person asking the questions was a bit shocked (but also questions such as) ‘Do you use (name of disability service provider)?’ ‘No I don’t.’ ‘Why?’ ‘Because I don’t need them’ ‘But but but why?’ Those sort of – those sort of assessments, as if it was a shock and a horror that here I am living independent. (B02 NP)
I think I even said that to the lady, you know, do I have to be in a wheelchair or something to access this, and she sort of went yeah pretty much, that’s the kind of thing that we support. And I’m like ‘oh wow okay’. So I felt as if I was in a completely different category, but I also felt as if everything that I have is kind of just yeah, minimised away, ‘to get over myself’ kind of thing. (C07 NP)
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Unclear boundaries between the NDIS and mainstream sectors clouded the process of establishing eligibility to the NDIS.
And it's a back and forth game where - sorry, I've been going to try and get help from the NDIS then they say, ‘Go to Mental Health’ and Mental Health say, ‘No, apply for NDIS’ and it's back and forth, back and forth, and it's just frustrating because you never get anywhere. (A11 NP)
The perspective of the service provider and workforce stakeholder organisations
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Disability service providers and representatives from workforce stakeholder organisations raised concerns about the responsiveness of the new system and whether it in fact added to the burden that people living with disability were already experiencing when navigating the disability supports environment. There was also concern that NDIA processes created barriers to accessing the NDIS which could result in some people with disability (particularly those with psychosocial disability or English as their second language) being excluded from service provision.
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Two years into the NDIS roll-out, respondents continued to report the negative impact of bureaucratic processes within the NDIS on people with disability and their families. Those considered particularly vulnerable were NDIS participants with limited personal capacity or support to manage NDIA processes and those with psychosocial disability. It was believed that the information provided by the NDIA was not appropriate for diverse populations.
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Several barriers to the engagement of people with psychosocial disability with the NDIS were identified in wave 1. First, the language of permanent disability used in the NDIS was contradictory to the recovery model of the mental health sector. Second, acknowledgement of their condition and the need for support was an issue for some people with psychosocial disability: ‘there are a lot of clients who don’t even recognise they’ve got a mental illness. They’re not going to go to the NDIA’ (B04S W1). Third, mental health service providers were concerned about the capacity of this cohort to navigate the various NDIA processes effectively, particularly plan development, noting that ‘those that most need it will find the process extremely difficult’ (E01S W1).
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In wave 2 mental health service providers reported some positive outcomes for people with psychosocial disability participating in the NDIS including more access to services. However, there were still concerns from both providers and workforce stakeholder organisations that higher rates of ineligibility and lower levels of participation persisted for people with psychosocial disability. The co-location of NDIS offices with Centrelink was also considered to further undermine engagement with the NDIS. A comprehensive approach to address these issues was not perceived to be occurring and a lack of consultation with mental health stakeholders was reportedly continuing.
There is really significant concern from mental health providers that the structure and the philosophy of the Scheme doesn’t fit well with mental health and I know there’s peak body work going on at that level and you know some views about the fact that mental health should remain outside the Scheme. (04R W2)I was appalled when I heard that the NDIA were going to set up in every Centrelink office. Now, for people with a mental health issue who are feeling slightly paranoid, that’s not going to work. Turning it into a much more bureaucratic stuff that is associated with their income, it just means that the sickest people are going to fall through the gaps. And those people are going to end up back in emergency departments, and in these hospitals.… the NDIS isn’t built to focus on those people. (B04S W2)
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In wave 1 a number of improvements were suggested. These include more support for people with disability around the process of transitioning into the NDIS and greater access to support coordination and stronger protections for their most vulnerable clients. Improvements specific to support services for people with psychosocial disability included the development of specialist support clusters which worked with the recovery model utilised in the mental health sector; processes to accommodate participants who did not recognise that they had a psychosocial disability; and dedicated support services for the families of people with psychosocial disability.
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In wave 2 providers welcomed the funding of support coordination in many NDIS participant’s plans. Concerns remained, however, about insufficient safeguards to protect the most vulnerable NDIS participants. At the time of the wave 2 interviews, improvements specific to mental health support clusters were being reviewed by the NDIA.
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As in wave 1, concerns about poor communication from the NDIA to providers persisted, in particular the timeliness and amount of information provided to the sector about future directions and changes to the NDIS. Many provider organisations continued to attend monthly forums and quarterly meetings facilitated by the NDIA or National Disability Services (NDS). While providers continued to value a collaborative partnership approach with the NDIA, many expressed ongoing concerns that the NDIA was not open to advice or feedback from the sector.
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Organisations felt that the information shared by the NDIA was risk averse and lacking in transparency. It was also noted that reports produced on behalf of the NDIA had not been published and this had led to concerns of a duplication of work.
The communication from the NDIA is appalling. The public communication, the stuff in press releases and so forth, is very dumbed down: it’s lots of pictures of people in wheelchairs looking happy and I’m sure there’s a role for that and the department needs to do that kind of thing, but…there’s a very risk-averse culture in that bureaucracy, you know, they’re paranoid about criticism in public and so they’ll err on the side of releasing less information rather than more at the very time that sectors like ours and our members are begging for information to resolve the uncertainty. (08R W2)
At one point [our colleague] looked at, counted up all the research and demonstration work that the agency was doing and out of 50 projects there'd been reports from three or four of them or something. I mean, he just was making the point that there's so much work that we haven't had any results from. (05R W2)
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Further criticisms about the information provided by the NDIA to providers included a lack of specific information regarding outcomes, quality and safeguards, and market positions.
I don’t think the Agency’s thinking what data would the sector like or need, for example…different therapy professions have been bundled together now in a catalogue pricing item, and presumably that’s going to make it extremely difficult to disaggregate demand and supply, and volume of work paid for and so on by specialist, different specialisations…if we can’t look at what’s happening to demand for speech therapy in Barwon as opposed to occupational therapy. You know, that’s a real problem. (05R W2)
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A considerable number of providers across the trial sites noted in wave 1 that the NDIS had created an ‘administrative burden’ (D04S W1) for providers including extra paperwork and processes, and time spent managing problems with the NDIS portal. Simpler and less bureaucratic processes were recommended. In particular, improvements to the IT system, especially the provider portal, were seen as necessary in order to alleviate the administrative burden the NDIS imposed on providers.
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Providers continued to report similar examples and concerns about administrative burden due to the NDIS in wave 2 and NDIS processes continued to add to staff workloads.
The perspective of the NDIA staff
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NDIA staff reported that the NDIS had overestimated participants’ capacity to complete paperwork, and perceived the planning documents to be too complicated for some people with disability to complete on their own. Various examples were provided of people with literacy problems or cognitive impairments struggling to understand the various forms:
It’s clear that they haven’t been designed with people with disability. They’re unintuitive, hard to read, you know, they’re probably a bit long… I would struggle to complete, to be honest. They’re really government forms. (B11N W1)
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In wave 1, eligibility decisions for the NDIS were still being determined at the local trial site level. The national access team was in the process of being established but had not yet begun to operate. By wave 2, NDIA staff advised that the national access team had been operating for some time, providing a centralised eligibility process with the aim to increase consistency of decision.
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NDIA staff reported a number of concerns with the national access team. Several advised that the national access approach had resulted in a slowing down of eligibility processes. Others observed that centralising the eligibility process resulted in contextual, trial site specific knowledge being absent in decision-making around eligibility.
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