Chapter 6

Other key issues

This chapter examines other key issues related to the implementation and performance of the National Disability Insurance Scheme (NDIS), including:
access issues;
thin markets for services and supports;
portal issues;
National Disability Insurance Agency (NDIA) communication with participants and providers;
recovering payments for services;
privacy and the use of personal information; and
end of life issues.
The issues noted above have been included in this chapter because they do not appear to relate thematically to issues in other chapters—for example, because they do not relate to financial matters or have a disproportionate impact on a particular cohort. However, the committee emphasises that the issues included in this chapter are no less significant than the issues examined elsewhere in the report.
Committee views on each of the issues above appear throughout the chapter, along with recommendations. The chapter concludes by noting some issues on which the committee received a small amount of evidence, and which the committee may consider in more detail in the future.

Access issues

A number of submitters raised concerns relating to NDIS access processes, and eligibility for the scheme. In particular, submitters were concerned about the definition of 'permanent' impairment, and about access to the NDIS for people with certain types of disability. These matters are discussed in more detail below.

Definition of 'permanent' impairment

A key concern relating to access to the NDIS is the definition of 'permanent' in the NDIS eligibility criteria. The National Disability Insurance Scheme Act 2013 (NDIS Act) provides that for a person to be eligible for the scheme, they must have an impairment that is, or impairments that are, permanent or likely to be permanent.1 The NDIS (Becoming a Participant) Rules 2016 provide that an impairment is or is likely to be permanent where 'there are no known, available and appropriate evidence-based clinical, medical or other treatments that would be likely to remedy the impairment'.2
The Public Interest Advocacy Centre (PIAC) stated that the permanence criteria may not be suitable for people with psychosocial disability, due to the episodic, fluctuating nature of mental health conditions. It also expressed concern that the NDIS Act and Rules leave the question of whether a treatment is 'available' and 'appropriate' to the NDIA's discretion, noting that the NDIA and the Administrative Appeals Tribunal (AAT) have considered treatment to be 'available' and 'appropriate' even if it poses a risk to a person's health.
The PIAC provided an example to illustrate these concerns:
[O]ne stakeholder told PIAC of a client – 'Emma' – who was denied entry to the NDIS in part because her impairment was not permanent. The NDIA considered there was 'available and appropriate' treatment for the impairment, being brain surgery.
Emma advised the NDIA that she had made an informed decision, based on specialists' advice, that surgery was not suitable for her. Despite this, the NDIA defended its decision. The NDIA stated in its internal review decision that, because Emma had 'declined surgery as an option', Emma did not meet the permanence requirements because 'all treatment options have not been explored'.3
The PIAC recommended that the NDIS Act and Rules be amended to clarify the meaning of 'permanent' in the NDIS access process. It also recommended that, in line with the criteria that apply to the Disability Support Pension (DSP), the NDIS Act and Rules should be amended to clarify that 'available and appropriate' treatment means treatment that:
is available at a location reasonably accessible to the person;
is at a reasonable cost;
can reliably be expected to result in a substantial improvement in functional capacity;
is regularly undertaken or performed;
has a high success rate; and
carries a low risk to the person.4

Eligibility for people with particular disability types

Some submitters expressed concern that the access to the NDIS is difficult for people with certain conditions, impairments and disability types. Moreover, even when access is granted, individuals in these cohorts may have difficulty obtaining safe, quality services and supports.
For example, the Queensland Law Society (QLS) expressed concerns about access and eligibility for people living with conditions such as Multiple Sclerosis (MS), stating that:
[A] member reported cases where persons with multiple sclerosis were being refused reasonable NDIS service costs on the basis that their condition at the time of approval was relatively stable. However, this did not consider the fluctuating nature of the condition, and as such, the likelihood that support would be necessary when relapsing-remitting episodes occur.5
Several submitters raised concern that people with cystic fibrosis (CF) have difficulty accessing the NDIS and securing reasonable and necessary supports. One of these submitters—the Australian CF Hub—stated that of the few people with CF who have applied for access to the NDIS, the majority have been denied access. Reasons provided for rejecting applications have included the following:
CF is a health condition not a disability, where supports related to health are the responsibility of the state and territory run public health systems.
The early intervention services are available elsewhere.
CF is not a lifelong disability.6
The Australian CF Hub asserted that these reasons are all factually incorrect, and stated that comments by NDIA assessors in relation to access decisions reflect a 'concerning lack of understanding' of the impact of CF. According to the Australian CF Hub, NDIA assessors 'view CF as a treatable disease, which implies a cure'.7
The Cystic Fibrosis Federation expressed similar concerns, noting that while people who live with CF experience permanent functional impairment as a result of their condition, they remain excluded from the NDIS. According to the Cystic Fibrosis Federation, this is despite the fact that many people with CF answer 'yes' to all the eligibility questions on the NDIS checklist.8
Both the Cystic Fibrosis Federation and the Australian CF Hub raised concern that without access to the NDIS, many people living with CF are left without the support needed to effectively manage their condition. Both organisations noted that while the mainstream health system is effective in providing medical interventions, it does not provide the supports needed for meaningful social and economic participation.9 For example, the Australian CF Hub stated:
What [the health system] does well is 1) prescribing medications and 2) providing reactive care when we experience episodic 'exacerbations'. For example, we receive intravenous antibiotics during hospitalisations of 2–4 week duration with each exacerbation. What the health system does not do well is 1) provide early intervention supports to allow us to proactively manage our disability the rest of the time as well as allow us to maintain more normal and productive lives 2) assist with the significant out-of- pocket costs borne by us to adhere to our treatment regime 3) help us mitigate the debilitating consequences of CF.10
These concerns were echoed in several individual submissions by people with lived experience of CF. These submissions emphasised the need for and the value of NDIS supports for people with CF, who often have little or no support in managing the impact of CF on their lives. The submissions also highlighted the need to recognise CF as a disability for the purposes of the NDIS, rather than only as a health condition. For example, one submitter stated:
People living with Cystic Fibrosis need long-term support; they're not getting better. They have a permanent and significant disability affecting their ability to take part in everyday activities. Their condition is only ever getting worse with time but with proper management and NDIS support, decline could be slowed and provide people living with CF with the opportunity to lead a more fulfilling life.11
In light of the concerns outlined above, submitters representing people with lived experience of CF called for the committee to:
agree to include CF on the list of disability types eligible for NDIS-funded support; and
note and discuss the gap between mainstream related supports and the eligibility for NDIS funded health related supports for people with CF.12
Migraine Australia raised similar concerns regarding access to NDIS supports for people living with migraine. It stated that the NDIA does not appear to consider forms of migraine to be permanent or a disability. This is despite 'the obvious physical limitations and genetic nature' of the condition.13 Migraine Australia observed that this view of migraine has led the NDIA to deny access requests from applicants living with migraine. It suggested that, in such circumstances, people living with migraine are often left without any support, due to the withdrawal of state disability supports following rollout of the NDIS and the decision not to list medications which assist with the management of migraine on the Pharmaceutical Benefits Scheme (PBS).14
In light of these concerns, Migraine Australia recommended that:
a definition of migraine be developed for use within government, which acknowledges migraine as a permanent, genetic and serious neurological spectrum disorder;
migraine be added to the 'List B' and 'List D' conditions for the NDIS, to remove any dispute about whether migraine is a disability and to assist with eligibility for early intervention supports; and
all rejected NDIS applications by people with migraine be reviewed.15
Huntington's NSW ACT stated that the NDIS is not meeting the needs of people with progressive neurological conditions, noting that many people in this cohort have expressed concern that they cannot access suitable services or qualified staff, and cannot persuade mainstream service providers or support coordinators to deliver services that meet their needs. In light of these issues, Huntington's NSW ACT recommended that the NDIS ascertain the proportion of participants with disability caused by progressive neurological conditions, and allocate an equivalent proportion of resources to supporting this cohort.16

Committee view

The committee heard that there are a number of concerns relating to how the definition of 'permanent' impairment is applied in access processes. Evidence also indicated that people living with particular disability types are experiencing difficulties accessing the scheme, as the NDIA considers that their condition requires medical intervention, not disability support.
The committee notes that the 2019 Review of the NDIS Act led by David Tune AO PSM (Tune Review) found there is significant confusion around eligibility criteria, particularly as to the application of 'permanency' for psychosocial impairment(s) and whether a diagnosis is sufficient evidence of functional impairment. It recommended amending the NDIS Act and Rules to:
provide clearer guidance for the NDIA in considering whether a psychosocial impairment is permanent, recognising that some conditions may be episodic or fluctuating; and
remove references to psychiatric conditions when determining eligibility, and replace those references with 'psychosocial disability'.17
The Government supported this recommendation, noting that greater clarity on the definition of 'permanency' for psychosocial disability would improve responsiveness and provide certainty about eligibility for people with mental health conditions, service providers and health professionals. The Government also noted that Disability Ministers had agreed to improve access to the NDIS for people with psychosocial disability through a range of strategies, priority areas for improvement to access processes; and establishing of a Psychosocial Disability Recovery Framework by mid–2021, in consultation with states and territories and peak bodies.18
The committee encourages the Government to implement this recommendation of the Tune Review as a matter of urgency. As part of this process, the committee encourages the Government to consider whether the NDIS Act and Rules should also be amended to align the meaning of 'available and appropriate' treatment with the criteria which apply to the DSP.
Noting concerns raised by submitters representing particular disability types, the committee also encourages the NDIA to review available medical literature and consult with people with disability and peak bodies, to determine whether CF, migraine and progressive neurological impairment should be included on the NDIA's List A or List B conditions.
The committee otherwise proposes to maintain a watching brief in relation to these matters.

Thin markets

The term 'thin markets' refers to a lack of services for participants. During this this inquiry, the committee heard that thin markets may particularly affect participants with high or complex support needs, participants from culturally and linguistically diverse (CALD) backgrounds19, Aboriginal and Torres Strait Islander participants20, and participants in regional, rural and remote areas. Key issues concerning thin markets include:
inability to implement NDIS plans because of a lack of services;21
lack of consistency in services within an area;22
the need for greater levels of support coordination;23
limited numbers of NDIA staff and partners in the community;24 and
pricing which is not appropriately adapted to service delivery in regional, rural and remote areas.25
Issues around providers of last resort were also raised. For example, Advocacy for Inclusion (AFI) highlighted a 'thin market' for Providers of Last Resort, pointing to ongoing confusion about who is responsible for services of last resort. It called for the NDIA to 'revaluate what "last resort"' means and, if there is no market in this area, 'one needs to be created to provide basic crisis intervention and basic services and supports alongside advocacy organisations in each jurisdiction'.26

Australian Government position

The Department of Social Services (DSS) and the NDIA in 2019 consulted on the NDIS Thin Markets Project. Key outputs of the project were a framework for addressing thin market challenges, including for rural and remote areas, and a roadmap for developing and delivering practical trial projects. The categories that the project considered included:
geographically rural and remote areas;
support type (for supply specialised supports with insufficient supply or low demand);
supports for people with complex needs, such as early childhood, behaviour intervention, and specialist disability accommodation;
support for Aboriginal and Torres Strait Island participants; and
support for CALD participants.27
In its submission, the NDIA stated that the Council of Australian Governments (COAG) Disability Reform Council—which includes Commonwealth, state and territory disability ministers—recognised that a 'one-size-fits-all' approach is not suitable to address market failure for certain geographic locations or cohorts of people with disability.
The NDIA submitted that, subject to restrictions associated with the COVID-19 pandemic, trial projects are currently being implemented in partnership with state and territory governments to address thin market challenges. These trials 'will address specific thin market challenges while testing a range of market interventions, including types of commissioning arrangements'.28 According to the NDIA's most recent quarterly report:
Trials are already achieving positive results. Strong local networks have been developed, including with state government representatives, and market facilitation has provided support for NDIS participants to receive the services they need and support a more connected local market.
Insights from the trials are informing NDIA's business-as-usual approach to monitoring, identifying, prioritising and intervening in markets. The NDIA approach to delivering market monitoring and intervention will be provided to State and Territory governments later this year.29
The NDIA has also noted that the Price Guide provides higher prices for some supports in remote areas as a response to higher costs. The NDIA is also reviewing the NDIS Rural and Remote Strategy 2016–2019 to assess progress and to provide direction for 2020 and beyond.30

Committee view

The committee recognises that a number of the issues concerning thin markets have continued beyond full NDIS implementation. The recent decision by the NDIA to carry out trial projects in thin market areas identified by the states and territories is to be commended, and the committee encourages the NDIA to implement the successful outcomes of these trials.
The committee has also considered the issue of thin markets in other inquiries undertaken during the current Parliament. For example:
as part of its inquiry into Supported Independent Living (SIL), the committee recommended that the NDIA actively work to address thin markets, and ensure that work to address thin markets in regional, rural and remote areas captures both SIL and Specialist Disability Accommodation;31
in its interim report on the NDIS Workforce, the committee considered a number of matters associated with thin markets, including local workforce development, the maldistribution of allied health services; and workforce concerns for Aboriginal and Torres Strait Islander peoples;32 and
in its final report on NDIS Planning, the committee considered planning for participants in rural and remote areas, and planning concerns for Aboriginal and Torres Strait Islander peoples.33
The committee will maintain a watching brief in relation to thin market issues, pending further development of the NDIS Thin Markets Project and actions taken in response to the committee's recent inquiries. The committee is likely to consider issues related to thin markets in more detail in subsequent reports.

Portal issues

Participants use the MyPlace participant portal to access their plans, while providers use the MyPlace provider portal to claim for payments. Participants who self-manage their plans pay providers directly for services, with providers invoicing the participants. If a participant has a plan manager, providers send invoices to the plan manager, who then processes payments through the portal. For participants who are managed by the NDIA, registered providers submit payment requests through the MyPlace portal once a support has been delivered or provided. The provider must create a service booking before providing the support—otherwise they will not be reimbursed.34
Some evidence indicated that the portal is too complex for participants to use. For example, Ms Kirsten Deane, Campaign Director, Every Australian Counts, stated that the portal 'continues to be a frustration'. Ms Deane acknowledged 'that the NDIA is putting a lot of effort into updating the portal', but stated that the portal 'is one area that needs to have a bit more emphasis'.35
The father of a participant noted that accessing the portal 'requires a high level of computer literacy and a stable internet access with provision to upload documents (that requires a camera and the ability to use it)'.36 People with Disabilities (WA) Inc provided the committee with the report of a co-design project between people with of disability and service providers on improving experiences of the NDIS (PwDWA Report). The PwDWA Report included a statement from the mother of a participant, outlining the impact of being unable to access the portal:
I had to wait 6 weeks before I was able to access it to pay my providers. That was after around a dozen absolutely frustrating calls to the call centre… Still nothing changed, only the story as to why it was not working each time. Despite the complex care planner being aware of it, her response was I'll get back to you…The financial stress that put us under as we were unable to pay carers that we desperately needed cannot be underestimated, and if I did not have a strong relationship with Sadie's respite provider, they would have been quite within their right to have refused us service.37
Ms Caitlin McMorrow, National Operations Lead for NDIS, Vision Australia, highlighted issues associated with the accessibility of the portal, stating that 'really simple things, like the date fields in the portal, aren't accessible to someone who's using screen-reading technology'. Ms McMorrow noted that this means 'fairly straightforward tasks', like make a service booking or searching for a plan, are challenging.38
The committee also heard that the portal is creating difficulties for providers. For example, the Illawarra Disability Alliance (IDA) observed that providers have invested heavily in IT systems and resources to operate within the NDIS, noting that leveraging applications and software for rostering and claiming can deliver efficiencies. However, the IDA expressed concern that these efficiencies have not been realised due to inadequacies in the portal, and to 'upgrading and constant changes' to the portal. According to the IDA, it is now common for service providers to employ fulltime staff just to manage portal claim errors.39 In addition, the IDA noted that:
providers are unable to access reports of service bookings, their status, and the amount remaining;
providers do not have the ability to generate 'exceptions reports', showing where the NDIA has adjusted booking amounts or cancelled bookings; and
changes are often made to the portal without prior communications to providers or software vendors.40
The IDA recommended a series of improvements to the portal and associated ICT systems, including:
enhancing portal functionality to provide alerts when plans are ended prior to their intended expiration date;
implementing a ticketing system to manage technical enquiries and record and respond to provider or participant support needs in a timely manner;
establishing an environment for providers to test their systems interface when upgrading or changing their own software;
developing portal functionality for the generation of useful reports by providers, LAC and NDIA staff, thus removing the burden of continual extraction of data from provider CRMs;
developing web services or API technology that would facilitate live linkages to disability service providers' CRM;
collaboration and consultation with software providers to find ways to make the NDIA Portal work more efficiently and effectively; and
the NDIA consider transactional complexity when designing business solutions and implementing changes that are intended to be favourable.41
Yooralla, a service provider in Victoria, noted that the NDIA is looking at integrating the Provider Digital Access (ProDA) portal with providers' systems. However, as part of the integration process, the NDIA 'has proposed extra compliance requirements' which 'probably outweigh the benefits'. Yooralla advocated for the compliance requirements to be reconsidered, and suggested that any requirements should be proportional to the data shared between the provider and the NDIA.42
AFI proposed that the NDIA 'continue to develop the portal in consultation with providers, participants and informal supports, to ensure that the site is user-centred and easily navigated'.43

NDIA position

The NDIA advised that it has developed a Digital Partnership Program to manage controlled and secure access to some of its data and systems, with access managed via Application Programming Interfaces (APIs). The NDIA stated that the APIs are being created 'so providers and software developers can create tools, apps and digital marketplaces to improve how participants, providers and the NDIA' connect and work together. According to the NDIA, in March 2020 the APIs were made available to registered providers so that they would be able to connect their systems and automate transactions that are usually completed in MyPlace—such as service bookings and payment requests. Providers were also encouraged to provide feedback on the APIs.44
On 30 June 2020, the Minister for the NDIS announced that the next phase of the Digital Partnership Program will mean that more software developers who are working with registered NDIS providers will be able to 'request access to …APIs, creating more opportunities for digital experts to develop new tools and applications'. The Minister stated that this next phase 'will help lay the foundations for a sophisticated and advanced digital environment managed by experts in the sector…[W]e welcome and encourage more software developers to request access' to the APIs.45

Committee view

The committee heard that both participants and providers have concerns about the MyPlace portal. In particular, the committee heard that the portal interface is complex, and requires a high level of computer literacy. The committee also heard that providers may be unable to access or create some reports, and that changes are often made to the portal without being properly communicated to providers or software vendors.
The committee notes that a number of these concerns were raised in late 2019 to early 2020. Since then, the NDIA has progressed initiatives to enhance the MyPlace portal, including through its Digital Partnership Program and recent trialling of APIs.
The committee has therefore determined that it will maintain a watching brief. If needed, the committee will return to issues associated with the portal in its future reports into general issues around the implementation and performance of the NDIS.

NDIA communication with participants and providers

Several submitters expressed concern that the NDIA is often unresponsive to inquiries and complaints, and sometimes contacts participants and their representatives in ways that do not reflect participants' wishes.
For example, Making Connections Together (MCT) expressed concern that its enquiries and requests are 'most often…not responded to', noting that timely responses are critical to ensuring participants are able to access appropriate and necessary supports. MCT also expressed concern that:
providers are unable to obtain support for payment requests from the provider payments or provider supports areas within the NDIA;
administrative staff are not accurately recording client consents; and
administrative staff lack knowledge about guardianship and financial management.46
The QLS observed that the NDIA made contact with one of its members by telephone, despite having been informed that email contact is preferred due to the member having a hearing impairment. The member also explained over the phone that full participation in a phone conversation was not feasible, reiterating their request that communication be via email. According to QLS, the member was told that this was not possible.47
One submitter observed that although their disability prevents them from using a phone, the NDIA still attempted to make contact by phone as part of their NDIS access process. According to the submitter, the NDIA did not leave a message, and the submitter was only alerted to the call when their doctor contacted the NDIA six weeks later.48
Another submitter noted that the NDIA had sent them a letter, asking them to contact the NDIA's compliance team. Without additional information as to the purpose of the contact, the submitter experienced considerable anxiety as to whether the NDIA was considering some form of adverse action. Ultimately, the NDIA explained that the contact was part of an 'education program' for participants who are self-managed. However, this was not made clear in the original contact, and the submitter was plan managed—not self-managed. The submitter stated that the letter from the NDIA was 'distressing, poorly worded and totally unnecessary', and that 'education…is not education when it comes from a compliance department. It's a threat'.49

Committee view

In a 2017 Progress Report, tabled during the 45th Parliament, a former iteration of this committee noted that it had received 'much evidence' concerning poor communication with participants by the NDIA. The committee also noted that in other inquiries, submitters had raised concerns relating to a lack of clarity, consistency and accuracy in information provided by the NDIA; difficulties contacting the agency to obtain information; and a lack of timely responses to queries.50 The committee also highlighted these issues in its 2019 Progress Report, and strongly encouraged the NDIA to:
continue reviewing and improving its publications to ensure clarity and consistency of language and information; and
develop additional guidance and training materials to ensure its staff and contractors provide clear and consistent information to participants, their families and carers.51
Evidence provided to the present inquiry indicates that some of these issues persist. In particular, the committee is concerned that the NDIA has—in some cases—failed to honour participants' express wishes as to preferred manner of contact, and has engaged with participants in ways that have caused stress and anxiety. This suggests that the NDIA may not have adequate mechanisms in place to ensure participants' wishes are recorded and respected.
The committee therefore considers that the NDIA should develop, publish and implement clear protocols for communicating with participants about matters related to the NDIS, co-designed with participants and representative bodies. The committee considers that these protocols should include, at a minimum:
processes for clearly recording participants' wishes about communications from the NDIA;
mechanisms to ensure that participants' wishes respected in communication from the NDIA; and
instructions for engaging with participants in relation to particular matters (for example, providing information to participants about changes to the scheme, or informing participants about compliance action).

Recommendation 9

The committee recommends that the National Disability Insurance Agency develop, publish and implement clear protocols for communicating with participants about matters relating to the National Disability Insurance Scheme.

Recovering payments for services

Several submitters expressed concern about payments to providers for services delivered to NDIS participants. Mr Michael Robinson observed that invoice payments to providers are sometimes months overdue, and that there is a lack of consistency in the payment of invoices to smaller providers. Mr Robinson queried if there is a system in place to ensure the timeliness and constancy of payments, beyond a guardian having access to the payments portal.52
Yooralla noted that it is often difficult to recover payments from plan managed and self-managed participants, stating that:
[W]hile payments made by the NDIA are effected in a timely manner, the same cannot be said of plan managers and self-managed participants. It would appear that an increasing number of participants are choosing to either self-manage their packages or to engage plan managers; however, many participants are unaware of the implication of these processes, leading to unacceptable payment delays.53
Yooralla asserted that where a provider is unable to secure timely payments from plan managers, providers should be able to seek help from the NDIA.54
In its submission to the committee's inquiry into the NDIS Workforce, Exercise and Sports Science Australia (ESSA) noted that its members increasingly have difficulty recovering costs from plan managed participants—with managers reporting that participants do not have the funds to pay invoices. According to ESSA, its members report contacting the NDIA when costs could not be recovered via plan managers, with the NDIA advising that participants would need to be taken to a debt collector:
One ESSA member, a small business owner who refused to send their client to a debt collector, wrote off $5000 in losses in December 2019. This member noted that it did not seem ethical to send a person to a debt collector, when they had engaged a financial administrator to manage their plan funds because they did not have the capacity to do this for themselves.55
Allied Health Professions Australia (AHPA) similarly noted that cost recovery is an issue for providers, due to participants accepting services without the budget to fund them. AHPA noted that, in such cases, the NDIA advises providers to pursue the debt from participants. Often, this leaves the provider to absorb the debt—as the provider is unwilling to take this kind of action.56
MCT noted that, in some cases, providers are expected to deliver services even where no funding is available (for example, because a participant's plan has expired), out of a sense of duty of care. While providers are often able to recover costs at a later time (such as when a new plan is approved), they are left out of pocket in the intervening period. Compounding this issue is that the NDIA is often unresponsive to providers about this matter:
We and our colleagues have many experiences of emailing 'Provider Payments' for assistance in these case, but never hear back. The lack of response leaves providers out of pocket. For a small business or sole trader even a relatively small outstanding fee can have a big impact on financial viability. Getting a payment for the service can take months and a number of approaches through different channels including attending the NDIA office in person. This leaves small providers at great risk and a contingency mechanism needs to be put in place for instances where plans expire.57

NDIA position

The NDIA has recently released a Guide to Plan Management (Guide). The Guide states that a participant's plan manager has an ongoing responsibility for monitoring plan funding and paying for supports delivered to the participant, including processing payment requests through the MyPlace portal or other technology options such as APIs. According to the Guide, a plan manager:
must validate whether invoices received from providers are in accordance with the plan, and in line with expected NDIS plan spend, within no more than five business days; and
should arrange for a prompt payment to a service provider, or prompt reimbursement to a participant, within two business days of the manager receiving payment from the NDIS.58
Plan managers are also expected, at a minimum, to provide monthly financial statements to participants. These statements should include:
a report which details the participant's NDIS plan spend since the previous issued statement;
the remaining balance of funds in the participant's plan; and
an indication of whether the participant's plan spend is consistent with, above or below the forecasted plan spend.59
It is best practice for a plan manager to support the participant by providing access to real-time monitoring of funds through a variety of communication methods, such as use of an online portal or application, phone or email.60
If a participant is spending plan funds faster than anticipated, and there is a risk of funds being exhausted before the next scheduled plan review, the plan manager is expected to engage early with the participant in relation to the effective, efficient utilisation of funds throughout the plan period. If additional funding is required, the participant can contact the NDIA to discuss options.61
Complementary guidance for self-managed participants on making payments to providers is available in the Guide to Self Management.62
The committee has heard that there may be inconsistencies in these documents which create challenges for plan managers and self-managed participants seeking to discharge their obligations. For example, Support Management Solutions (SMS) noted that there is ambiguity in the Guide to Plan Management regarding whether a plan manager is able to exercise their judgment when processing invoices. SMS also noted that although the NDIA's operational guidelines state that the NDIS does not fund gym membership, this is not reflected in the Guide to Self Management.63

Committee view

The committee heard that providers are experiencing challenges recovering payments—particularly from plan-managed and self-managed participants, and that in some cases the practical outcome is providers absorbing financial losses. Evidence suggests that these challenges may be due (at least in part) to a lack of clarity around the financial obligations of plan managers and plan-managed participants in relation to making payments to providers.
The committee notes that the NDIA has recently released the Guide to Plan Management, which provides a detailed overview of the agency's expectations regarding the management of plan funding. This complements the Guide to Self Management, which provides guidance to self-managed participants about payments to service providers. The committee is optimistic that these guidance documents will help resolve some issues associated with recovering costs from plan-managed and self-managed participants, and encourages the NDIA to engage appropriately with plan managers, plan-managed participants and self-managed participants to ensure that financial obligations are understood. The committee also encourages the NDIA to regularly review its guidance documents, to ensure that ambiguities are identified and addressed.
However, it remains unclear to the committee what options are available to providers where a participant or a plan manager is unwilling or unable to pay for supports that have been delivered. The committee does not consider that it would be appropriate for a provider to refer a participant or plan manager to a debt collector, or otherwise to pursue debt enforcement action.
The committee encourages the NDIA to actively consider mechanisms to allow providers to recover the cost of services which have been delivered, in cases where a plan manager or self-managed participant has not made payment within a reasonable time.
The committee has heard that provider fraud may arise in a number of ways, including claiming multiple times for one service; intentionally or accidentally generating inaccurate invoices; over-servicing participants; and colluding with participants to siphon plan funds.64 The committee does not suggest that many providers engage in such behaviour. Nevertheless, the committee emphasises that mechanisms to enable providers to recover their costs should not create incentives to fraud or reduce choice and control for participants.
Noting that providers must bear some responsibility for ensuring supports are not delivered where no funding is available, the committee also encourages providers to engage with plan managers and self-managed participants before supports are delivered to ensure there are sufficient funds in the participant's plan. The committee emphasises that any engagement must be conducted in a respectful and appropriate manner.
The committee otherwise proposes to maintain a watching brief in relation to these matters.

Privacy and the use of personal information

The committee heard that there are concerns about the extent to which NDIS participants must surrender their privacy in order to obtain reasonable and necessary supports, and about the privacy practices of some NDIA staff and service providers.
The PwDWA Report emphasised that people with disability have a right to control their personal information, and stated that all information relating to participants held by the NDIS should be accessible to participants 'without resistance'. The Report also asserted that the NDIS must be accountable for the information it requires, collects and stores:
Particularly, there needs to be accountability around any risk factors involved when requiring compromising information from [people with disability] by identifying what circumstances would require compromising information to be submitted by participants, recognising the impact of this kind of intrusion and invasion, and taking responsibility for identifying information that is indicative of a duty to act.65
In addition, the PwDWA Report stated that the NDIS needs to develop transparency surrounding how information will be acted upon, and must take responsibility for acting on information in a way that benefits the participant and does not introduce avoidable harm. It recommended the NDIA develop an 'accessible, transparent policy regarding privacy, confidentiality, and Freedom of Information that is respectful of the agency's role in servicing and supplying funding to people with disabilities in a way that is with integrity to [the] vision of self [for people with disability]'.66
These views were echoed in submissions to the inquiry. For example, one submitter stated that the relationship between participants and providers 'is one of imbalance from the start and the mental and emotional damage of surrendering…privacy to an endless line of professionals is not insignificant'. The submitter also outlined an interaction with a provider where privacy was not adequately respected:
My physio not only recently had her kids popping their heads into the shot a couple of times during a telehealth session where my urinary incontinence and my obesity was discussed, she also had her husband standing in the back of the room, looking at the screen…When I gathered the courage to express my discomfort, I was told by my physio that he was just looking into the backyard.
My privacy, already surrendered to so many strangers, wasn't just breached, but my unease at the situation was dismissed. How can the covenant of surrendered privacy and promised protection not be irreparably broken? What do I do now, though? Find yet another stranger to tell intimate and frankly embarrassing things about myself? Accept the breach and no longer be open about how I am functioning? Either way, I lose. I'm no longer confident this trade-off is worth it and I am considering cancelling physio from my plan as a result.67
The Sexuality Education Counselling and Consultancy Agency (SECCA) raised concern that people with disability are required to disclose the reasons they need support to planners in order to access services following assault or abuse. It also noted that reports from counselling sessions involving participants are required to be emailed to a generic email address, with no clarification as to the privacy safeguards which apply.68
In a submission from Mrs Marie Johnson, Ms Johnson's daughter provided a personal account of her experiences with the NDIA, which indicated that some agency staff may not give sufficient consideration to the privacy of people with disability seeking to access the NDIS:
As we entered the [NDIA] office, it did not seem to be set up to receive applications at all. It was very clinical. We approached the front office and a lady came over. She saw the size of the application and immediately started questioning that it was not in the right format. She immediately began flicking through my folder and talking about its contents, in front of everyone else, breaching my rights to privacy, confidentiality and my human right to pass over information in a way that I could.69
Another submitter outlined a case where a support coordinator did not respect the privacy of a participant, stating that:
Although NDIS always talks about Privacy and Confidentiality the current [support coordinator] hasn't observed it when it has been to her advantage…[R]ecently she distributed a confidential psychological assessment…to people who did not need to know including support workers who had left. She did not have [the participant's] permission prior to doing this.70

NDIA position

According to the NDIS website, the NDIA's policy is to 'respect and protect the privacy of all people connected to the NDIA, including participants, providers, employees, contractors and community partners'. The NDIA is bound by the Privacy Act 1988 (Privacy Act) and confidentiality provisions in the NDIS Act.71
The NDIA collects and holds information that is reasonably necessary to carry out its role. The information that the agency collects and holds includes, but is not limited to, personal information about participants and users of NDIS services, and about its employees, contractors and providers. The NDIA may also collect some 'health information' as defined in the Privacy Act.72
The NDIS website states that the NDIA collects personal information from people directly or from people who are authorised to represent them. A person does not have to provide the NDIA with all the information that is requested; however, choosing not to provide information may mean that:
the NDIA may not be able to decide if a person can become a participant;
decisions may be delayed while the NDIA seeks further information; and
the NDIA may not be able to approve a participant's plan.73
The NDIA may collect, hold, use and disclose personal information for the purpose of providing services—including implementing the NDIS; conducting operations, communicating with participants and health providers; conducting research and evaluation on the NDIS; and complying with legal obligations.74
If the NDIA needs to disclose personal information to external parties, it will de-identify the information prior to disclosure. The NDIS will not usually disclose a person's personal information to anyone outside the NDIA except where it refers a participant to an external provider of in-kind supports under an approved NDIS plan; where that person consents; or where the disclosure is authorised or required under law.75

Committee view

The committee notes that the NDIA is subject to the Privacy Act, and that
Part 2 of the NDIS Act sets out requirements for the protection of information held by the agency. Further, organisations (such as service providers) with an annual turnover of more than $3 million are subject to the provisions of the Privacy Act, as are allied health professionals.76
This committee has not given specific consideration to privacy concerns in its previous inquiries. However, evidence provided to the committee suggests that privacy is a significant concern for a number of people with disability accessing the NDIS. The committee propose to maintain a watching brief in relation to this issue, and will address it in future inquiries if appropriate.

End of life issues

Under the NDIS Act, a person automatically ceases to be an NDIS participant when the person dies.77 When a person ceases to be a participant, they are not entitled to be paid amounts which relate to reasonable and necessary supports that would have otherwise been funded under the NDIS.78
The committee heard that the NDIS may not have effective mechanisms in place to support families, carers and others when a participant passes away. For example, Ms Bianca Grant, the mother of a participant, stated that:
With NDIS, if you die as a participant, [supports] just get cut off. There's none of that continued support coordination or even getting equipment back to where it goes… You don't have any funds. It just stops…
I've got a friend in Ballarat whose child passed away four months ago, and she's got a room full of all his equipment. She hasn't been able to get the reports back from therapy teams, all the photos and all of that stuff. You need that extra time just to tidy things up. It's such a good scheme you just don't want it to just end like that, like a mess. You kind of need that tidy-up stuff, if you know what I'm saying.79

Australian Government position

At a public hearing of the committee on 12 October 2020, Mr Martin Hoffman, the CEO of the NDIA, stated that a participant may have goals in their plan relating to their final years or months. These would inform how supports are structured and funded. Mr Hoffman also emphasised that the NDIS 'is not a provider of palliative care services'.80

Committee view

The committee notes that the death of a participant is a very real scenario—particularly where a participant has a degenerative disability. For many families and carers, coping with the death of a participant can be overwhelming, even without the added complexity of finalising and cancelling supports and returning pieces of assistive technology.
Issues associated with support and funding gaps where a participant passes away have also been raised in other inquiries by this committee.81
The committee acknowledges that the NDIS is not a provider of palliative care services, and that participants may include goals relating to their final years or months in a plan. However, the committee is concerned that the NDIS may not have effective processes in place to support families and carers in the event a participant passes away. By contrast, the committee notes that the Department of Veterans Affairs offers information to family members following the death of a veteran—including advice on what supports families are eligible for after the death of a veteran; what the family can do in the event of the death; who the family can contact for advice and support; ways to cope with grief; and a checklist for veterans to fill out ahead of time on who should be notified if they pass away.82 The Services Australia website also provides information about benefits available if a family member dies, and about managing circumstances related to a person's death.83
The committee considers that the NDIA should provide information on the NDIS website on managing circumstances related to the death of a participant. This should include information about: the services available to support family members; finalising or cancelling supports; and returning or otherwise dealing with items of assistive technology. The committee considers that this information would be of considerable value to family members and carers, as well as to participants who wish to make their own end-of-life arrangements.

Recommendation 10

The committee recommends that the National Disability Insurance Agency publish information about managing circumstances related to the death of a participant, including the support that is available to family members and carers, on the National Disability Insurance Scheme website.
If further evidence indicates that matters related to the death of a participant continue to be of concern for stakeholders, the committee may consider this issue in more detail in the future.

Other issues

Other issues raised in the inquiry included the following:
The intersection between income support arrangements such as JobSeeker and the NDIS.84
The NDIA's understanding of guardianship and associated financial management obligations.85
Access to crisis counselling for NDIS participants.86
Supported employment for NDIS participants.87
The NDIS not funding interventions based on applied behaviour analysis.88
The implementation of a real time claims system, which may have negative impacts for plan managers.89
If further evidence indicates that these matters continue to be of concern for stakeholders, the committee may consider them in more detail in the future.
Hon Kevin Andrews MP
Senator Carol Brown
Deputy Chair

  • 1
    NDIS Act, paragraph 24(1)(b).
  • 2
    National Disability Insurance Scheme (Becoming a Participant) Rules 2016, paras 5.4–5.7.
  • 3
    Public Interest Advocacy Centre, Submission 33, pp. 11–12. The PIAC noted that 'Emma' was ultimately granted access to the NDIS some 1 120 days after the initial request, and only after a second neurosurgeon's report was provided to clearly state that surgery was not suitable.
  • 4
    Public Interest Advocacy Centre, Submission 33, p. 12. See also Social Security (Tables for the Assessment of Work-related Impairment for Disability Support Pension) Determination 2011,
    s 6(4). The PIAC noted that some organisations have expressed concerns around the DSP criteria, and have recommended amendments to them. However, while the DSP criteria remain operative, the definition of 'reasonable treatment' provides a useful baseline for what could be considered 'available and appropriate' in the context of NDIS access decisions.
  • 5
    Queensland Law Society, Submission 54, pp. 3–4.
  • 6
    Australian CF Hub, Submission 36, p. 4.
  • 7
    Australian CF Hub, Submission 36, p. 5.
  • 8
    Cystic Fibrosis Federation members, Submission 35, [p. 3].
  • 9
    Cystic Fibrosis Federation members, Submission 35, [p. 4]; Australian CF Hub, Submission 36, p. 2.
  • 10
    Australian CF Hub, Submission 36, p. 2.
  • 11
    Submission for the inclusion of Cystic Fibrosis in the NDIS, Submission 38, Attachment 1, [p. 17].
  • 12
    Cystic Fibrosis Federation members, Submission 35, [p. 1]; Australian CF Hub, Submission 36, p. 1; Submission for the inclusion of Cystic Fibrosis in the NDIS, Submission 38, [p. 1]. The Australian CF Hub also recommended that this committee note and discuss the frequent rejections of NDIS applications by people with CF-related disability; and agree to create a 'Rare and Chronic Disease Specialist Assessor' role, so those assessing applications from people with CF (and other chronic diseases) have sufficient knowledge to provide fair and equitable assessments.
  • 13
    Migraine Australia, Submission 20, [p. 4].
  • 14
    Migraine Australia, Submission 20, [pp. 6–7].
  • 15
    Migraine Australia, Submission 20, [pp. 7–8].
  • 16
    Huntington's NSW ACT, Submission 34, [p. 1].
  • 17
    David Tune AO PSM, Review of the National Disability Insurance Scheme Act 2013: Removing red tape and implementing the NDIS Participant Service Guarantee, December 2019, pp. 71, 76.
  • 18
    Australian Government, Australian Government response to the 2019 Review of the National Disability Insurance Scheme Act 2013 report, August 2020, p. 7.
  • 19
    See Chapter 5 of this report for further discussion of issues affecting this cohort.
  • 20
    See Chapter 5 of this report for further discussion of issues affecting this cohort.
  • 21
    Ethnic Disability Advocacy Centre, Submission 22, p. 4; People With Disabilities (WA) Inc, Submission 32, p. 2; Ms Michelle O'Flynn, Director, Queensland Advocacy Incorporated, Committee Hansard, 8 October 2019, p. 40. See also Dr Andrew Webster, Head of Clinical Governance, Danila Dilba Health Service, Proof Committee Hansard, Senate Community Affairs References Committee, 14 October 2020, p. 7. The NDIS Planning Final Report also noted similar evidence in the context of that inquiry. See Joint Standing Committee on the National Disability Insurance Scheme, NDIS Planning Final Report, December 2020.
  • 22
    Ethnic Disability Advocacy Centre, Submission 22, p. 4.
  • 23
    Mr Max Wise, Assistant Director-General, Department of Communities, Disability Services and Seniors, Queensland, Committee Hansard, 8 October 2020, p. 59.
  • 24
    Advocacy for Inclusion, Submission 25, p. 45.
  • 25
    Illawarra Disability Alliance, Submission 11, [p. 5].
  • 26
    Advocacy for Inclusion, Submission 25, pp. 4, 42, 43.
  • 27
    Department of Social Services, NDIS Thin Markets Project, (accessed 9 November 2020).
  • 28
    National Disability Insurance Agency, Submission 37, pp. 28–29.
  • 29
    National Disability Insurance Agency, Quarterly Report to disability ministers, 30 September 2020,
    p. 72.
  • 30
    National Disability Insurance Agency, Submission 37, p. 8.
  • 31
    Joint Standing Committee on the National Disability Insurance Scheme, Report into Supported Independent Living, May 2020, pp. 129–130.
  • 32
    Joint Standing Committee on the National Disability Insurance Scheme, NDIS Workforce Interim Report, December 2020, in particular Chapter 8.
  • 33
    Joint Standing Committee on the National Disability Insurance Scheme, NDIS Planning Final Report, December 2020, in particular Chapter 8 and Chapter 9.
  • 34
    NDIS, Getting paid, (accessed 29 October 2020). Some submitters noted argued that people from culturally and linguistically diverse and refugee backgrounds are unable to use the portal as they do not have the computer literacy or English language skills to do so. See, for example, Ethnic Disability Advocacy Centre Submission 22 pp. 2, 6–7; People with Disabilities (WA), Submission 32, Attachment 1, p. 85.
  • 35
    Ms Kirsten Deane, Campaign Director, Every Australian Counts, Committee Hansard,
    8 October 2019, p. 17.
  • 36
    Name Withheld, Submission 18, p. [1]. See also Ms Lyn McHugh, Private capacity, Committee Hansard, 7 November 2019, pp. 53–54. Ms McHugh, who is the mother of a participant who is agency-managed, emphasised that the portal was too ‘high level’ in the information it provided.
  • 37
    See People With Disabilities (WA) Inc, Submission 32, Attachment 1, p. 65.
  • 38
    Ms Caitlin McMorrow, National Operations Lead for NDIS, Vision Australia, Committee Hansard, 8 October 2019, p. 26.
  • 39
    Illawarra Disability Alliance, Submission 11, [p. 7].
  • 40
    Illawarra Disability Alliance, Submission 11, [p. 8].
  • 41
    Illawarra Disability Alliance, Submission 11, [pp. 9–10].
  • 42
    Yooralla, Submission 7, p. 7.
  • 43
    Advocacy for Inclusion, Submission 25, p. 13.
  • 44
    National Disability Insurance Agency, Submission 37, p. 29.
  • 45
    The Hon Stuart Robert, Minister for the NDIS, 'Delivering the NDIS: Digital Partnership Program begins developer onboarding phase', Media Release, 30 June 2020, (accessed 4 December 2020) See also National Disability Insurance Agency, Submission 37, p. 29.
  • 46
    Making Connections Together, Submission 10, [p. 3].
  • 47
    Queensland Law Society, Submission 54, p. 2. QLS stated that after viewing published submissions to this inquiry, and after consulting with its members, 'it is clear that this is not an isolated occurrence'.
  • 48
    Name Withheld, Submission 6, [p. 1].
  • 49
    Name withheld, Submission 28 [pp. 1–2].
  • 50
    Joint Standing Committee on the National Disability Insurance Scheme, Progress Report,
    September 2017, pp. 57–58. See also Joint Standing Committee on the National Disability Insurance Scheme, NDIS ICT Systems, December 2018, pp. 5–15.
  • 51
    Joint Standing Committee on the National Disability Insurance Scheme, Progress Report,
    March 2019, pp. 63–64.
  • 52
    Mr Mike Robinson, Submission 29, [p. 2].
  • 53
    Yooralla, Submission 7, p. 7.
  • 54
    Yooralla, Submission 7, p. 7.
  • 55
    Exercise and Sports Science Australia, Submission 33 (inquiry into NDIS Workforce), p. 17. ESSA recommended that the NDIS Quality and Safeguards Commission develop an operational framework for plan managers, to ensure that minimum standards are upheld.
  • 56
    Allied Health Professions Australia, Submission 35 (inquiry into NDIS Workforce), [p. 11]. AHPA argued that NDIA systems must be more robust, and have mechanisms to ensure providers are only delivering services when participant budgets are sufficient to cover the associated costs.
  • 57
    Making Connections Together, Submission 10, [p. 3].
  • 58
    National Disability Insurance Agency, Guide to Plan Management, September 2020, pp. 13, 15, (accessed 12 November 2020).
  • 59
    National Disability Insurance Agency, Guide to Plan Management, September 2020, p. 17.
  • 60
    National Disability Insurance Agency, Guide to Plan Management, September 2020, p. 17.
  • 61
    National Disability Insurance Agency, Guide to Plan Management, September 2020, p. 16.
  • 62
    National Disability Insurance Agency, NDIS guide to Self Management, p. 12, (accessed 12 November 2020).
  • 63
    Support Management Solutions, Submission 58, pp. 2–3.
  • 64
    Support Management Solutions, Submission 58, pp. 4–5. SMS noted potential solutions to provider fraud include providing more information to plan managers in relation to a participant's plan, and increasing funding allocated for plan management, to enable plan managers to 'continue the valuable yet time-consuming work necessary for fraud detection'.
  • 65
    People With Disabilities (WA) Inc, Submission 32, Attachment 1, p. 24.
  • 66
    People With Disabilities (WA) Inc, Submission 32, Attachment 1, p. 24.
  • 67
    Name Withheld, Submission 47, [p. 2].
  • 68
    SECCA, Submission 24, [pp. 2–3]. As an example, SECCA noted that reports from counselling sessions at SECCA must be emailed to the NDIA via a generic email address. SECCA stated that it is unclear safeguards apply to this information.
  • 69
    Mrs Marie Johnson, Submission 17, p. 7.
  • 70
    Name withheld, Submission 62, [p. 2].
  • 71
    NDIS, Privacy, (accessed 9 November 2020).
  • 72
    NDIS, Privacy. Examples, of personal information include name, contact details date of birth and age; gender, details of participants' physical or mental health, including disabilities; information about participants' support requirements; details of guardians and nominees, including names, addresses and contact details; Centrelink Customer Reference Number (CRN); details of feedback or complaints about services provided by us; bank account details and employee records. 'Health information includes information about a person's health or disability, doctors a person has attended, and health services a person has received.
  • 73
    NDIS, Privacy.
  • 74
    NDIS, Privacy.
  • 75
    NDIS, Privacy.
  • 76
    Office of the Australian Information Commissioner, The Privacy Act: Rights and Responsibilities, (accessed 16 November 2020).
  • 77
    NDIS Act, s 29(1)(a).
  • 78
    NDIS, Access to the NDIS – When a person ceases to be a participant, (accessed 29 October 2020).
  • 79
    Ms Bianca Grant, Private Capacity, Committee Hansard, 7 November 2019, p. 50.
  • 80
    Mr Martin Hoffman, Chief Executive Officer, National Disability Insurance Agency, Proof Committee Hansard, 12 October 2020, p. 10.
  • 81
    See, for example, Joint Standing Committee on the National Disability Insurance Scheme, Report into Supported Independent Living, May 2020, pp. 102–103.
  • 82
    See Department of Veterans' Affairs, Planning Ahead: A Gide to Putting Your Affairs in Order, 2008, revised January 2019, (accessed 9 November 2020).
  • 83
    See Services Australia, Death and bereavement, (accessed 20 November 2020).
  • 84
    University of Notre Dame Australia & The Multicultural Disability Advocacy Association NSW, Submission 27, pp. 2–3.
  • 85
    Ms Kim Barker, Public Guardian, Office of the Public Guardian Tasmania, Committee Hansard,
    28 October 2019, p. 28; Making Connections Together, Submission 10, [p. 3].
  • 86
    SECCA, Submission 24, [pp. 2–4].
  • 87
    Ms Pauline Stanton, Director, Access2Choice Tasmania, Committee Hansard, 28 October 2019, p. 25; Illawarra Disability Alliance, Submission 11, [p. 9].
  • 88
    Name Withheld, Submission 14, p. 1.
  • 89
    Support Management Solutions, Submission 58, pp. 7–8.

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