4.1
This chapter considers evidence the committee heard about the importance of trust to the overall success of the NDIS, along with two key components linked to levels of trust in the scheme:
ensuring that the benefits of the NDIS are experienced equitably; and
the National Disability Insurance Agency's (NDIS) decision-making processes.
Trust
The role of trust in the NDIS
4.2
As a person centred and rights focused scheme, trust plays a crucial role in ensuring the effective operation of the NDIS. Melbourne Disability Institute told the committee that the scheme 'only works on trust', and explained:
To function effectively, people with disability and their families must trust that the scheme will be there for them when they need it, and that it will work in their best interests. In turn the NDIA must trust people with disability and their families to represent their needs and circumstances accurately. On a larger scale it must also trust them and their representative organisations to engage meaningfully on scheme implementation and reform.
4.3
Maintaining trust is also inherent in the management of financial sustainability of the scheme. The NDIA's Insurance Principles and Financial Sustainability Manual recognises that the perceptions of both participants and the wider community about the effectiveness of the scheme are core to managing financial sustainability, advising:
the management of financial sustainability is likely to involve the support and management of perceptions and attitudes. That is, in seeking to manage financial sustainability, the Agency should be seeking to influence the perceptions of both participants and contributors (including broader community attitudes), through evidence of independence, outcomes and social participation, and both the immediate and longer term financial outlook of the scheme.
Erosions of trust in the scheme
4.4
In its report into Independent Assessments, the committee noted that trust in the processes and overall proposals for changes to the scheme was seen to be undermined by policy development processes adopted by the NDIA. The NDIS Independent Advisory Council (Advisory Council) provided advice to the Board of the NDIA in July 2021 which noted that contested views of the purpose of the reforms to introduce independent assessments had heightened distrust. The Advisory Council also devoted a full section of its report to trust and how the government could rebuild trust with the disability sector.
4.5
Concerns about the erosion of trust between the NDIA and the disability community continued to be raised in this inquiry. Ms Jean Cotchin, Campaign Manager for Every Australian Counts told the committee that trust is at an 'all time low', with people feeling unable to trust information, including the presentation of data, from the NDIA. Ms Cotchin observed that the focus on cost projections has contributed to a lack of trust, making people 'feel like they are not valued, that they are too expensive, too difficult'. Ms Cotchin also explained that:
we all feel like the vision of the NDIS has been lost at the expense of the political cycle. This was meant to rise above and beyond politics and give people the support that they need and are entitled to. This continued rhetoric about costs and sustainability, when it's framed as the primary risk, is really damaging.
4.6
Melbourne Disability Institute told the committee that loss of certainty had continued to impact trust in the scheme:
One of the reasons people with disability and their families fought so hard for the introduction of the NDIS was the promise of certainty. Certainty in the knowledge that the scheme would be there when they needed it. In the case of older parents, certainty in the knowledge the scheme would support their adult child when they were no longer able to. This is an essential part of the trusted relationship between the NDIA and participants and their families. Unfortunately, recent actions by the NDIA have significantly eroded that trust.
4.7
Melbourne Disability Institute explained that trust was lacking from both sides:
The actions of the NDIA, particularly in the last eighteen months, demonstrate that that they do not trust anyone. They do not trust people with disability and their families. They do not trust medical professionals or allied health professionals. They do not trust their own staff or their community partners.
And sadly, as a result no one now trusts the NDIA…
Rebuilding trust
4.8
Ms Cotchin recognised the efforts from both the disability sector and the NDIA 'to try and repair that trust'. Ms Cotchin also pointed to the experiences of Every Australian Counts as providing insight into the types of measures that will be important to rebuild trust:
Clearly, Every Australian Counts is a very different organisation to the National Disability Insurance Agency, but people really do trust us. What lies at the heart of that is that we genuinely listen to people. I think we do a pretty good job of summarising their concerns and ideas, but there's plenty of solid information out there. There are lots of meaningful ways that you can rebuild trust, but what our community would find helpful is some real opportunities, considering all the circumstances that exist in their lives at the same time and not just NDIS participants waiting to write consultations on paper.
4.9
Ms Cotchin made the significant point that it is important for people with disability and their supporters to have trust in the materials provided to explain the work that the NDIA or the wider government is doing:
I would also like to suggest that, in the future, when independent research is carried out, the translations, including easy-read, are also provided independently in order to help rebuild trust, too, because there could be a sense from the community that it is interpreted in a way that might be favourable to the government organisation who paid for it.
4.10
Melbourne Disability Institute highlighted that '[t]rust is based on respect and equality' and argued that the NDIA must:
engage with the disability community on that level. It must learn to become a servant of the community it is supposed to empower and serve, rather than seeking to assert its power at every turn.
4.11
Melbourne Disability Institute told the committee that the senior management and board of the NDIA must 'also start to trust their staff and their community partners', and train and support their staff to carry out their important roles.
4.12
Ms Mary Henly-Collopy, National Disability Insurance Scheme Consultant, Australian Federation of Disability Organisations, recommended involving people with disability as paid advocates in the planning process, and observed that 'built into the original NDIS structure was that people with disability and their family supports were promised that a specific percentage of [local area coordinators] would either be a person with a disability or at least be people with lived experience of disability'. Ms Henly-Collopy questioned whether the agency has current data on the percentage of local area coordinators who identify as having a disability, noting that 'this would go a long way towards people with disability regaining confidence in the NDIS process'.
Equity
4.13
A wide range of participants to the inquiry, including the NDIA and DSS, emphasised the importance of ensuring that the benefits of the NDIS are enjoyed equitably by all people entitled to receive personalised supports.
4.14
Concerns that some groups of people with disability are not benefitting equally from the NDIS have been a feature of the scheme since its inception, and the committee has commented on this matter in numerous reports. The committee has continued to monitor initiatives to support equity for these groups in the scheme, including specialised pathways, targeted communications, and specific liaison roles.
Differences in plan funding across socio-economic areas
4.15
During the committee's inquiry into independent assessments, the NDIA and Minister for the NDIS raised concerns that payments across the scheme appeared to differ by socio-economic areas.
4.16
In October 2021 the NDIA released a report expanding on earlier analysis into plan budgets by socio-economic status included in the June 2021 NDIS Quarterly Report to disability ministers. This report considered the distribution of plan budgets within each socio-economic decile, with analysis indicating that 'on average, participants in the highest decile received plan budgets that were 9% higher than participants in the lowest decile ($55,700 compared with $51,300)'. The report further noted that the 'difference between the average (mean) standardised plan budget for participants in the tenth decile is $53,700 compared with $49,500 in the first decile (a difference of 8%). This is broadly consistent with the difference when plan budgets were not standardised for age and functional capacity'.
4.17
In their review of NDIS cost drivers and actuarial model, Taylor Fry also looked at variations in NDIS costs across geographical regions, finding that 'much of the variation is explained by socio-economic status and remoteness'. Taylor Fry's findings indicated:
a strong relationship between the socio-economic status of an area and the rate of application to the NDIS;
acceptance rates tending to be negatively correlated with access request rates (higher rates were seen in higher socio-economic areas, which in turn had lower application rates); and
no apparent systematic variation in average plan sizes for most regions by SEIFA (Socio-Economic Indexes for Areas) score or capital/regional areas.
4.18
Taylor Fry reflected on the previous NDIA analysis, noting they had found a similar effect, but noted that the effect was small relative to the variation considered in Taylor Fry's analysis. Taylor Fry also found small but material effects for payments and committed supports across socio-economic areas and noted that plan utilisation varies significantly by remoteness.
Submitter and witness views on equity
4.19
Professor Bruce Bonyhady, representing the Melbourne Disability Institute, explained the importance of equity in the NDIS at a public hearing in Melbourne:
As part of looking at the benefits, we need to make sure that the benefits are being equitably distributed. It would appear that some people who have a good education, who have the resources, are doing very well out of the NDIS, but I suspect that other people are less able to access the scheme and cannot necessarily utilise their packages in the way that people who are more advantaged can.
4.20
Professor Bonyhady told the committee that, generally, people in metropolitan areas are able to more easily navigate the market-driven system of the NDIS, and that 'the further away you move from metropolitan areas the more challenging that becomes'. Professor Bonyhady argued that more market stewardship, support management, case management and access to 'reliable, accessible, timely information' is required to support people who might struggle in the NDIS marketplace, as part of an 'ecosystem that needs to be built and maintained and refined using the data and using research to make sure the scheme achieves its vision'.
4.21
Ms Kirsten Deane, General Manager, Melbourne Disability Institute, also emphasised the importance of supports provided outside the NDIS to ensuring equity:
For the scheme to be truly equitable, the last person who's in should get a similar amount of support to the person who's just on the outside. But in order to do that we have to know more about what those people who are sitting just outside need, what would make a difference in their lives and what would be the best way to meet that.
4.22
Numerous submitters to the inquiry continued to raise equity concerns about the scheme, including in the context of:
access to the scheme, especially with respect to access to medical reports
supports for people who require interpreters;and
support for people from diverse cultural backgrounds, including Aboriginal and Torres Strait Islander people with a disability, and people with a disability from refugee backgrounds.
4.23
Other submitters raised concerns that equity in the scheme was being affected by variations in the quality of decision-making by the NDIA and NDIA partners, including inequitable variation across participants with similar support needs, and similar circumstances. These concerns are discussed further below.
NDIA decision-making
4.24
Within any government agency, numerous administrative decisions are made each day. Many of these decisions will directly impact individuals; in the case of the NDIA, decisions about what supports are included in a participant's plan can have significant and serious consequences, and directly impact that participant's quality of life.
4.25
In its report into independent assessments, the committee reflected on proposed measures to improve consistency in decision-making, but also emphasised that consistency does not necessarily mean equity, and that people with disability continue to need supports that reflect their individual circumstances.
4.26
The NDIS is an individualised scheme founded on principles of the social model of disability. In this context, implementation of consistent processes will not always lead to people with similar disabilities seeing the same outcomes, by virtue of the scheme being about individuals in their unique contexts.
Previous consideration of NDIS planning processes
4.27
Planning decisions have been a focus of consideration by this committee and other bodies since the inception of the NDIS. Concerns about inconsistent decision-making have been raised in a number of reports; examples of these are outlined below.
Productivity Commission 2017 Study into Scheme costs
4.28
In 2017, the Productivity Commission explained the importance of good planning processes to ensuring:
outcomes, benefits and equity in the Scheme
avoidance of costs associated with reviews
certainty about costs; and
4.29
The Commission reflected that the challenge for the future of the NDIS planning process was 'to find the right balance between individualisation and good outcomes for scheme participants on the one hand and ensuring equity among participants and the financial sustainability of the scheme on the other'. The Productivity Commission further remarked that it was 'likely to be some time before the right balance is struck'.
NDIS Planning Final Report
4.30
In its final report on NDIS planning, the committee heard concerns from participants, their families and advocates about major inconsistencies in plan funding between participants with the same disability type and even, in some instances, between siblings with the same disability type.
4.31
Submitters provided the committee with examples of participants with very similar circumstances having received differing funding allocations, with this difference, in some cases, being substantial. Submitters suggested that a variety of factors may play a role in inconsistency between plans, including:
the experience level of individual NDIA planners and training provided to planners
the ‘attitudes’ of planners towards certain services
being in a particular state or region
the amount of advocacy that a participant has; and
lack of transparency in the planning process.
4.32
The committee noted its concerns regarding inconsistencies in decisions about whether supports are 'reasonable and necessary'. However, the committee declined to make further recommendations about this issue, noting the range of recent measures introduced to improve planning processes over the course of that inquiry, and instead opted to 'maintain a watching brief and address outstanding issues in future reports'.
Australian National Audit Office performance audit
4.33
The Australian National Audit Office (ANAO) published its report outlining findings of its performance audit of the NDIA, in October 2020. The audit aimed to assess whether there were appropriate controls in place to ensure that supports in participants' plans were reasonable and necessary.
4.34
The ANAO found that while there were appropriate policies and processes that had been established in relation to participant planning, the implementation of these policies and processes had not been complied with during the participant planning process, with NDIA quality assurance audits indicating 'low levels of compliance with internal policy'. The ANAO concluded that the NDIA did 'not have appropriate controls to ensure supports in participant plans are reasonable and necessary', and that there were no 'appropriate oversight mechanisms to ensure the supports in participant plans are reasonable and necessary'.
4.35
The ANAO made three recommendations to improve decision-making processes within the NDIA, which the NDIA accepted and implemented.
Tune review
4.36
Published in January 2020, Chapter 4 of the Review of the National Disability Insurance Scheme Act 2013, conducted by David Tune AO PSM (Tune Review), considered the decision-making processes associated with planning and concluded that there was a lack of consistency in decision-making by the NDIA. Through consultation feedback, the review determined that ‘some participants with similar disability support needs reported they received very different types and values of supports in their plans’.
Administrative Appeals Tribunal cases
4.37
Any person directly affected by a decision made by the NDIA who is dissatisfied with the outcome of that decision can request an internal review of that decision. The list of these 'reviewable decisions' is set out in the Act and include decisions about whether a person is eligible to be a participant and the provision of supports.
4.38
If a person is further dissatisfied by the outcome of the internal review, they can also seek external review through the Administrative Appeals Tribunal (AAT).
4.39
The number of external appeals of NDIA decisions to the AAT is tracked by the NDIA in their quarterly reports. The most recent of these reported that the number of AAT cases as a proportion of active participants has increased significantly in recent quarters, from 0.78 per cent in June 2021 to 1.55 per cent in December 2021.
4.40
Questioning in 2021-22 Additional Estimates hearings also revealed that in the 6-month period between June and December 2021, there was a 400 per cent increase against the same period in the previous year for appeals of decisions in relation to NDIS plans.
Evidence from submitters and witnesses
4.41
Many submitters and witnesses were concerned about inconsistent decision-making by the NDIA and inequitable variations in plan funding between participants with similar needs, and similar circumstances.
4.42
Ms Kirsten Deane described recent tensions in finding the balance between making sure the scheme 'is genuinely an individualised scheme but is still fair and consistent' to the committee as a 'pendulum swing':
On the one hand we've had a lack of consistency in planning; it's one of the most common things people with disability and their families complain about with the NDIS—that it is consistently inconsistent. We also have the CEO and senior agencies saying the scheme is basically unadministerable in its current form because there are thousands of decisions that have to be made every day, and it's impossible to run a scheme in that way. What we had with independent assessments is the pendulum swinging the other way, to: 'We will standardise the assessment. We will create 400 personas. We will do planning that way' So we went from one extreme to the other instead of settling in the middle…
4.43
The committee also heard that, following from concerns raised by the NDIA and government ministers about rising costs of the scheme, some participants and their advocates feared that decisions were being influenced by a desire to reduce costs. Mr Patrick McGee, representing the Australian Federation of Disability Organisations, raised these concerns at the committee's public hearing in Melbourne:
What we are seeing, though, is the agency acting on what we think is the motivator of scheme costs being unsustainable. We are seeing plan reviews coming back with the amounts of money that have been in the previous plan being slashed, not just managed in an insurance framework or model. Whole swathes of funding are being cut.
The other thing that we're seeing is that this is not being done on the basis of evidence provided. This plan review process, where plans are coming back with lesser amounts of money, is not showing, in the context of evidence provided, that the disability needs of the person have decreased and thus the need for the funding has decreased. I think that that's the concern we have.
4.44
The committee heard concerns about rising numbers of AAT appeals from numerous submitters and witnesses.
4.45
Ms Mary Mallett, CEO of Disability Advocacy Network Australia also reflected on reports of increasing numbers of participants bringing appeals to the AAT in relation to planning decisions:
The other sense, from lots of advocates, is that people are having to go to the AAT—they're having to do an internal review, then take their issue and do an appeal to the AAT—to be able to demonstrate need. They've already demonstrated that need to the agency, and there is discussion among advocates as to exactly what that's about—is it the scheme wanting to save money? There is some sense, from some advocates, that it's something to do with the capacity or lack of capacity of some of the planners, who have been given the appropriate evidence but they don't understand it, they can't read it, and, if it is a complex issue, they just automatically send it for internal review and then onto the AAT, who then make a decision based on the original evidence that that panel had in front of them right at the beginning.
Government view
4.46
In a public hearing in February 2022, officials from the Department of Social Services (DSS) told the committee that the Australian Government is 'committed to working in partnership with participants, their families and carers, and the broader disability community to continue to develop the best scheme possible'. The officials noted that DSS and the NDIA have been 'engaging with and listening to stakeholders on ways in which we can further improve the NDIS'.
4.47
According to the joint supplementary submission to this inquiry from DSS and the NDIA, the NDIA is also continuing its work to explore the reasons behind variations in plan budgets, including in relation to where a person lives in Australia. The DSS and NDIA also noted that variations in plan funding for participants with similar needs can arise for a range of reasons, including:
different goals, preferences and choices (e.g. regarding employment and social participation)
the different capabilities of participants, carers and practitioners to communicate goals and needs, and gather and provide evidence, noting that historically, participants entering from state and territory systems were transferred at speed without assessments
different levels of sustainable informal, community or mainstream supports available.
4.48
The DSS and NDIA also acknowledged that subjective judgments under NDIS legislation may lead to inconsistency in decision-making, for example:
The planning sections of NDIS legislation require consideration of whether individual supports should be funded, using ‘reasonable and necessary’ criteria which are largely subjective and qualitative.
The drafting of section 34 of the Act requires planners to make judgements which balance a range of complex considerations. This arguably positions the current planning process as a funding negotiation, rather than being about how participants can best meet their disability related needs and pursue their goals.
The Act does not specify with certainty whether reasonable and necessary supports must arise directly from the impairment(s) that initially met the access requirements, or whether reasonable and necessary support needs can arise later from additional impairments and losses of function that would meet the access criteria, or even those that would not.
In the absence of consistently applied policy, and/or from a genuine attempt to individualise and customise decision-making, there will be inconsistent determination of which supports may be funded, leading to variable funding outcomes for participants.
4.49
The DSS and NDIA also drew the committee's attention to the Federal Court's recent comments on the 'highly discretionary nature of decision-making under the Act'. The Federal Court noted that 'there may be an area of decisional freedom in the conclusion reached by a decision-maker about whether a support is properly characterised as a 'reasonable and necessary support'. DSS and NDIA explained further:
In other words, reasonable people can disagree as to what is a reasonable and necessary support. This makes the consistent and predictable operation of the Scheme difficult for participants and the Agency.
4.50
Measures to address inequitable plan variations announced by the government include the work in partnership with people with lived disability experience to co-design a person-centred assessment approach 'that delivers consistency and equity in access and planning outcomes', and the:
…completion of existing projects that support participants to make and communicate informed, evidence-based decisions by:
increasing the capacity and capability of NDIA staff and partners to find, generate and use evidence for decision-making through a range of research and evaluation activities;
developing “supported decision guides” to help participants make informed, evidence-based choices; and
providing participants with support to make more structured goals, through additional fields in the NDIA business system, to enable them to clearly communicate their expectations to providers and other people supporting them.
4.51
In response to concerns about reductions in funding in participants' plans, the NDIA maintained that:
Plan reviews result in plan budgets varying from plan to plan for a variety of reasons – for example, one-off capital items in one plan and not the next. When a plan review is conducted, information about a participant’s goals, situation and support needs are considered. A participant’s needs and situation may change over time, which means their NDIS funding is likely to change over that time. Some supports may no longer be required, while for others, disability support needs might increase and the NDIA might consider funding more supports.
The NDIA has published an Operational Guideline on Plan Reviews which details the reasons why a new plan could be different to a current plan.
4.52
The NDIA emphasised that the scheme is 'uncapped and demand driven', meaning that funding for the scheme is provided based on participants in the scheme (who meet access requirements) and the reasonable and necessary supports they require as set out in the Act.