Chapter 2

Participant readiness

2.1        The NDIS model relies on informed participants making decisions in their own best interests. Consequently, participant readiness is central to the success of the Scheme.

2.2        As described by the Productivity Commission, the outcomes of the Scheme are directly linked to how ready participants are to access and enter the NDIS, to get plans that meet their needs, to find supports and services, and to self-manage their plans if they wish to.[1]

2.3        Throughout the inquiry the committee heard that most participants are not ready to confidently engage and navigate the market.[2] As one submitter put it to the committee:

In general, participants and families are overwhelmed, confused and anxious about the market and how to engage with the NDIS, let alone navigating to a new service provider.[3]

2.4        The chapter explores the current challenges and issues faced by NDIS participants to access quality services, navigate the marketplace and exercise choice and control. It discusses:

Adequacy of plans

2.5        Adequate provision and calibration of funding are fundamental to create a participant enabling environment.

2.6        Of concern is that submitters continue to raise issues around adequacy of plans and ability of participants to activate and manage plans.[4] These issues are not new and have been discussed in past inquiries undertaken by this committee.[5]

2.7        Similar to previous inquiries, submitters raised concerns about the lack of understanding and knowledge of disabilities; supports required, as well as therapies and intervention options from planners or Local Area Coordinators (LACs).[6]

2.8        Some submitters also contended that, despite the NDIS being based on an insurance model, a focus on containing costs rather than making early investments to achieve quality and long-term outcomes has been also affecting the quality of participant plans.[7]

2.9        For example, the Public Service Research Group noted:

The NDIS promises participants choice and control in planning their care, but their options for support are bounded by cost-benefit analysis and discretionary decision-making on the part of the Scheme's care planners.[8]

Support coordination in plans

2.10      The importance of including support coordination in plans was raised on many occasions during the inquiry.[9]

2.11      As described by the NDIA, support coordination assists participants to understand, activate and implement their plans, including helping participants to choose and connect with service providers.[10]

2.12      Support coordination is not available to all participants. The majority of participants do not have funding for support coordination in their plans because it is allocated in plans for participants who have less capacity to actively manage their affairs, including those with complex and high support needs.

2.13      At 30 June 2018, 38 percent of active participants have support coordination in their plans.[11]

2.14      Inquiry participants argued that support coordination should be more systematically included in participants' plans as it plays a critical role in plan implementation.[12]

2.15      For example, Queenslanders with Disability Network (QDN) identified the role of support coordination in providing the information required to activate, access and choose providers:

It is critical that support coordination fulfils the need to better assist people with disability through practical and accessible information to understand how their plans work, what services are available in their local area and how they can navigate the new market.[13]

2.16      Mental Illness Fellowship of Australia (MIFA) stated:

It is widely considered by the sector that support coordination should  be an essential and ongoing part of plans. To readily participate in the market, participants must be adequately informed and supported.[14]

2.17      One of the reasons put forward by submitters to increase access to support coordination to more participants is that the lack of support coordination in plans contributes to underutilisation of funds in plans and the inability for participants to navigate the market.[15] 

2.18      Similar evidence was received by the committee during the Transitional Arrangements for the NDIS inquiry.[16]

2.19      Many submitters recommended that support coordination be offered as an ongoing part of plans.[17]

NDIA work

2.20      The NDIA has undertaken work to address planning issues. From April to October 2017, the NDIA undertook the NDIS Pathway Review to redesign and enhance the experience of participants throughout their NDIS journey, including at implementation phase.

2.21      The NDIA made a number of commitments to improve the pathway experience in response to the findings from the review, including:

2.22      The new participant pathway was piloted from December 2017 to April 2018 in a number of local government areas in Victoria.[19]

2.23      Following this initial pilot that focused on the planning phase, some pathway enhancements have now been implemented with further improvements scheduled to roll-out across Australia in the second half of 2018.[20]

2.24      In its most recent website update on pathway improvement, the NDIA stated:

There are also some challenges, including managing the logistics around the pilot planning approach and continuing to build the skills and capabilities of planners.[21]

Committee view

2.25      The committee acknowledges the recent work undertaken by the NDIA to improve the participant pathway. It is too early to comment on the effectiveness of the new measures for a number of reasons. Firstly, the implementation of the new participant pathway has only started to be rolled-out nationally. Secondly, it is unclear how the NDIA intends to build on the lessons learned from the pilot to make further improvements. Thirdly, as acknowledged by the NDIA, building the skills and capabilities of planners remains a challenge.

2.26      The committee is of the view that working towards improving the planning process remains critical to ensuring adequacy of plans and provision of information about services to participants. To this effect, building the skills and capacities of the planners should be a key priority for the NDIA.  Indeed, many of the issues raised by inquiry participants are directly related to the lack of knowledge and expertise of planners. The committee believes that the NDIA should ensure that training on how participants access services and implement their plan is included in the ongoing training of all planners.

Recommendation 2

2.27      The committee recommends the NDIA ensure that training on how participants access services and implement their plan is included in the ongoing mandatory training for all NDIA staff and contracted Partners in the Community involved in the development and approval of plans.

Support coordination

2.28      In the Transitional Arrangements for the NDIS report, the committee discussed the importance of support coordination in the enactment and implementation of participants' plans, especially for people with high and complex needs.[22]

2.29      The committee remains concerned with reports of participants not knowing how to use their plans or underutilising their plans because of a lack of funded support coordination in their plans. The committee agrees with submitters that support coordination is vital to ensure that people can, over time, build their capacity to understand and navigate the market.

2.30      The committee recommends the NDIA implement the Transitional Arrangements for the NDIS recommendation 21 in relation to support coordination funding in plans. The committee notes that the Government supported this recommendation.[23]

Recommendation 3

2.31      The committee recommends the NDIA implement the Transitional Arrangements for the NDIS Recommendation 21 in relation to support coordination which says:

The committee recommends the NDIA ensure support coordination is adequately funded in Plans to meet Participants' needs and not limited to a fixed period.

Plan implementation and engaging providers

Activating plans

2.32      Depending on the participant's circumstances, there are supports available to activate plans:

The NDIS can work with you to put your plan into action, and depending on your situation there are a range of people who can help you implement your plan and support you to start receiving supports. These would have been discussed with you during your planning process and may be a Local Area Coordinator or an Early Childhood Partner. Some people may also have a Support Coordinator funded in their plan to help them get started. You can start your plan by yourself if you are self-managed.[24]

2.33      As stated by the NDIA, the role of Local Area Coordinators (LACs) includes helping participants to find and start receiving services as well as self-directing or self-managing their plans.[25] Similarly, Early Childhood Early Intervention (ECEI) Partners are also tasked with assisting participants and families to connect with providers.[26]

2.34      Feros Care, a Partner in the Community delivering LAC services, explained at a public hearing their role in helping participants through the activation and implementation of their plans:

During the planning and implementation phase, we are able to point participants towards possible service providers, as well as assisting them on how to navigate the portal, interact with service providers and other skills they may require.[27]

2.35      However, the committee heard that some participants lack support to activate and implement their plans.[28] For example, Mr Rowe from Aged and Disability Advocacy Australia stated:

Even when we're getting plans through, people don't know what to do with that approval and so they're sitting on it. While we tick one box to say they've got a plan, people still haven't got a service. So we're no better off.[29]

2.36      Similarly, the Queenslanders with Disability Network (QDN) reported:

This participant readiness has focused on front end access and pre-planning. However, once people register for the Scheme, Queenslanders with disability are reporting that they do not know how to activate their plans, what options are available for managing their plans; and how to access the right supports, aids and equipment.[30]

2.37      Additionally, QDN reported that people expressed confusion around the role and responsibility of LACs in plan activations:

...people expressed confusion around 'new language and roles' including how difference roles fit into plan activation e.g. Supports Coordinator, Local Area Coordinator, Service Provider, Plan Manager.[31]

Knowledge of relevant services

2.38      Prior to navigating the market to find providers, it is important that participants and their families know what types of supports best meet their needs so they can make informed decisions.

2.39      However, submitters reported that in many cases, participants and their families did not have the relevant information or the knowledge to choose supports and services that adequately met their needs.[32]

2.40      For example, Occupational Therapy Australia (OTA) raised the issue that 'some participants may not possess the requisite knowledge and skills to choose supports that adequately meet their (often complex) needs'.[33]

2.41      Similarly, Speech Pathology Australia pointed out that prior to finding a service provider, participants will require to understand the intervention options available:

With regard to speech pathology services, our members have reported that Participants need a greater depth of information about the types of intervention that may be appropriate for them than what is currently available [...] so that participants are able to make informed decisions.[34]

2.42       According to some submitters, Planners and ECEI Partners are not always able to assist as they, themselves have limited knowledge of some disabilities and interventions' options.[35]

Finding service providers

2.43      As described by the NDIA, LACs and ECEI Partners can help participants to find and connect with service providers. However, it appears that LACs and ECEI Partners are not systematically fulfilling this role due to their current focus on getting participants in the Scheme.[36]

2.44      Brotherhood of St Laurence pointed out that 'for participants who do receive funded supports, the significant focus on planning and gaining access to the scheme has meant that the LAC has limited time available to assist participants to navigate the marketplace and implement their plans'.[37]

2.45      As a result, participants and their families have mostly to rely on information provided on the NDIS website, the NDIS portal and through the NDIS call centres.

2.46      However, as the Federation of Ethnic Communities Councils of Australia (FECCA) explained:

Placing information on a website and expecting consumers to access it will not be sufficient to enable participants in the NDIS to be informed about the services available to them.[38]

Digital literacy and accessibility

2.47      Occupational Therapy Australia reported that 'concerns have been raised that the NDIA's perception of a participant being ready to navigate new markets is very much focused on one's computer literacy'.[39]

2.48      Submitters reported that some participants and their families are not equipped to deal with the ICT side of the NDIS as they often do not use or own a computer. [40] For example, Ms Kim McRae from the NPY Women's Council stated:

There's an issue around portal access. The assumption with the NDIS that every family can access information through the portal has proven to be incorrect for our families out on the APY Lands. People don't have computers in their homes. Some families just do not have access to IT, for a range of reasons, or they don't have internet access out there.[41]

2.49      The Benevolent Society noted that accessibility of information and digital literacy is an issue affecting participants' ability to navigate the NDIS:

The NDIS is based on the assumption that participants can navigate the system digitally and electronically, which in many instances is not the case. The NDIS is also heavily dependent on written communication, which is not accessible for all people with disability. There is a long way for service providers and the NDIA to go to prepare and disseminate information in a wide variety of formats and modalities to ensure it is accessible for all participants.[42] 

2.50      Overall, inquiry participants found the NDIS IT system and NDIS website difficult to navigate and not user friendly.[43]

2.51      As Sunnyfield pointed out, without an NDIS user friendly system 'it is hard for many to even contemplate shopping around for different support providers to exercise greater choice and control of supports'.[44]

NDIS participant portal

2.52      The NDIS participant portal is a secure website for participants or their nominee to view their NDIS plan, request payments and manage services with providers. It also features a provider finder tool to enable participants to find providers and services in their preferred location.[45]

2.53      The requirement to have a MyGov account to access the NDIS participant portal has proven impractical as some participants have no access to a mobile phone and email account.[46]

2.54      Some submitters also reported that the search function for providers on the NDIS portal is inadequate and ineffective.[47]

2.55      In its submission, the NDIA stated that the 'Provider Finder tool is currently being enhanced to provide better information to participants on the location and nature of services offered by registered providers, with stage one completed in December 2017'.[48]

2.56      More recently, on 23 July 2018, the NDIA has launched further Provider Finder enhancements, which the NDIA claims is:

Social media

2.57      Meanwhile, those who are digitally literate are turning to social media as they 'feel that this is the only effective communication channel available to them'.[50]

2.58      In total, there are almost 100 NDIS Facebook sites with a membership of nearly 90 000 people.[51]

2.59      Participants reported having tried to contact the NDIA or LACs in the first instance but were unable to get a timely response. Participants also found that the website does not easily provide the information they are seeking. As a result, they use social media to get a wide range of information:

Questions posed on social media can be broad such as how plans are managed and how can the plan budget be spent, to questions about specific compliance issues such as whether receipts need to be kept, how to employ a staff member, how to implement a service agreement, whether a provider needs an ABN, managing the portal, or where to seek a specific assessment to prove disability if this is no longer being provided by the local state service.[52]

2.60      The Health Issues Centre pointed out that 'relying on social media to answer technical questions risks people receiving inconsistent or false information'.[53]

Committee view

Underutilisation

2.61      Overall, the committee is concerned that some participants are struggling to activate and implement their plans. It appears that the resources and supports put in place by the NDIA to help participants activating and implementing their plans are not reaching some participants and their families, leaving them unable to navigate the marketplace to find and engage providers. More generally, these supports appear to be insufficient or ineffective to assist participants and their families. The rise in use of social media to find answers to simple technical questions strongly indicates that the NDIS systems and communication tools are not meeting the needs of participants.

LACs and ECEI Partners

2.62      In theory, the role of LACs and ECEI Partners includes helping participants to enact their plans and find suitable service providers. However, evidence received by the committee shows that LACs and ECEI Partners are not systematically fulfilling this role. Some participants seem even to be unaware of the role and responsibility of LACs and ECEI Partners in plan activation.

2.63      The committee believes that, because of the need to meet bilateral estimates, LACs and ECEI Partners have been focusing too much on planning-related activities. As a result, they have not been able to assist participants with plan activation and implementation.

2.64      The committee is of the view that especially during 2018-19, the largest transition year in terms of scheduled intake of participants, the NDIA needs to urgently and clearly direct more resources towards plan activation and implementation. The committee is aware of the recent announcement made on 24 August 2018 by the Minister for the Department of Social Services that the NDIA, over the next 12 months, will hire additional staff to support participants with the development and implementation of their plans.[54] 

Recommendation 4

2.65      The committee recommends the NDIA urgently allocate more staff and support to assist participants with plan implementation.

2.66      On a more general note, the NDIA has recently committed to implement significant reforms to improve participant readiness as well as market readiness for providers.[55] The committee is of the view that the NDIA should monitor the adequacy of its staffing levels to ensure it has the capacity to implement any reforms in a timely manner.

Recommendation 5

2.67      The committee recommends the NDIA monitor and report on the adequacy of its staffing levels on an annual basis.

Knowledge of relevant services

2.68      The committee is concerned that some participants have no sufficient information about the types of supports and interventions that can best meet their needs. This is particularly affecting specific cohorts, including people who are deaf and hard of hearing; children and people with complex needs. The committee has discussed this issue in previous inquiry reports and made recommendations to create relevant pathways to facilitate access to appropriate intervention and support options.

2.69      The committee understands the NDIA has undertaken work to develop tailored pathways to ensure the NDIA has the right response for all participants including participants with complex support needs, children aged zero to six, participants with psychosocial disability, participants from culturally and linguistically diverse (CALD) backgrounds, Aboriginal and Torres Strait Islander communities, Remote and very remote communities, and LGBTQIA+ communities.[56] This work includes ensuring participants are provided with relevant information about relevant intervention options and service providers. The committee understands that this work has now been 'underway' for over a year. The committee urges the NDIA to expedite this work and start implementing the tailored pathways. 

Recommendation 6

2.70      The committee recommends the NDIA urgently implement the tailored pathways designed to support:

Online resources

2.71      The committee heard that many participants and their families have come to rely on online resources to get information, including about NDIS registered providers. The committee is concerned that the lack of digital literacy and / or ability to access computers can be a significant barrier for some participants and their families. Additionally, submitters also reported that the NDIS ICT system, including its website and MyPlace Portal are not user friendly.

2.72      The committee agrees with submitters that finding relevant information on the NDIS website is not easy and, at times, confusing. Overall, participants find the navigation difficult and the design confusing. The committee is of the view that the NDIA must urgently improve the user experience of the NDIA's online presence.

2.73      The committee is aware that the NDIA is working on improving the participant Portal, including the Find a Provider Tool. The committee is currently undertaking a new inquiry focusing on NDIS ICT systems. This includes examining the appropriateness and effectiveness of the portal and its impact on the implementation of the NDIS. The committee will report on this matter in the near future.

Recommendation 7

2.74      The committee recommends the NDIA urgently undertake work to improve its website, including its design and navigation; and the quality and accessibility of its content.

Self-managed plans

2.75      At a public hearing, the NDIA Regional Manager for Queensland North summarised the options for plan management:

But, depending on the person's individual preference or the family's preference, they can choose to manage their plan in a number of different ways. They can be entirely invested in the management and have entire control over the management of how that plan is implemented, or, at the other end of the scale, they can vest the management in the agency, in their affairs.[57]

2.76      Self-managing means that participants are responsible for requesting and paying the invoices related to the supports received in their plans. Self-managing also gives the participants the opportunity to purchase supports from suppliers that have not registered with the NDIA.[58]

2.77      At 30 June 2018, 12 percent of participants were fully self-managing their plans and another 12 percent were partly self-managing their plans.[59]

2.78      According to the NDIA, self-management of funds maximises choice and control, promotes innovation in support purchasing, expands the workforce beyond the traditional disability sector and is a key mechanism for Scheme sustainability.[60]

2.79      The NDIA's view of market success for participants includes 'plans being self-directed'.[61] The NDIA Board has committed to achieve 30 percent of participants self-managing at full Scheme in 2020.[62]

2.80      Queenslanders with Disability Network (QDN) noted the low take-up of self-managed plans in Queensland. QDN believes this indicates the lack of participants' confidence and readiness in managing their own supports and navigating the market.[63]

2.81      One Door reported that there has been a lack of information and 'conflicting or changing indications about how self-management works'.[64]

2.82      Submitters reported that families who are self-managing say that the process is very confusing and that very little support is provided by the NDIA or their partnering LAC and ECEI organisations to build their capacity to understand the complexities of self-managing plans.[65]

2.83      Family Advocacy contended that LACs and ECEI partners are discouraging family members from self-managing their NDIS plans as the process is too confusing and overwhelming for most people.[66]

NDIA initiatives

2.84      The NDIA says it has established a project team dedicated to maximising participant opportunities afforded by the option to self-manage NDIS fund. So far, work underway includes:

Committee view

2.85      The committee believes the NDIA Board's commitment to 30 percent of participants self-managing their plans by 2020 will not be realised unless more information, support and capacity building activities are available to participants and their families.

2.86      People who are self-managing their plans have the opportunity to engage service providers which are not registered with the NDIS. In theory, it gives self-managed participants a wider range of choices of services. For the NDIA, having more participants self-managing may also be a way to overcome some of the challenges associated with shortages of NDIS registered providers.

2.87       Overall, the committee has not heard of the benefits of self-managing. During this inquiry, the committee heard no evidence that, at this stage, people are seeing self-management as a way to expand their choices of supports and find quality services. It is likely that it will take time before participants feel confident to explore the full range of service options. The evidence received around self-management further points to the lack of participant readiness to manage their own supports and navigate the market.

Capacity to exercise choice and control

2.88      Participant choice and control is a core feature of the Scheme's design.[68] However, many submitters are of the view that some participants and their families have not yet the capacity to exercise choice and control and that the supports and resources currently in place are not conducive to build their capacity to do so.[69]

Transition to a market-based system

2.89      Prior to the introduction of the NDIS, most participants never had to navigate support services in the marketplace, which is why the majority of participants and their families are finding the new system very challenging.[70]

2.90       As described by People With Disability Australia, 'the role of consumer of disability services, as opposed to recipient, is relatively new for many people with disability'.[71]

2.91      For example, Merri Health noted that 'many individuals and families have had limited experience with choice, i.e. they took what was available previously'.[72]

2.92      Ms Mullins from Independent Advocacy in the Tropics described the situation  to the committee:

There's another group of people who want to navigate the market but don't know how. It's all too much for them. They were block funded before. They like the fact that now they have choice, whereas before they had no choice. They had to take what they were given. But at this stage they do not have the skills to navigate the market on their own.[73]

2.93      The Public Service Research Group (PSRG) reported the observations made by a participant, which highlights how a lot participants and their families are not yet equipped to fully exercise choice and control:

A lot of families of people with disabilities didn't really seem to know actually what they want to do because they're not practiced at making choices, or making real choices. They’re practiced at making choices from what's available, but not necessarily saying 'I don't like anything that you've got available for me, this is what I want 'cause that's what will make a difference to my quality of life.[74]

2.94      Dr Jim Stanford, Director at the Centre for Future Work, is of the view that a market based delivery system does not necessarily lead to choice and control:

The assumption is often made that, if you have a market and the person has a voucher and they can choose where to spend it, that gives them choice and control, and that is not necessarily the case, depending on how the market is functioning, how much awareness and information they have and how much power they have to negotiate a market based system. So I would not see the provision of services through a market based model, as is contemplated under the NDIS, as in and of itself being synonymous with choice and control.[75]

2.95      The Dietitians Association of Australia argued that it will take time for participants to become informed and confident consumers:

Some participants and their families will need time and support to build their capacity and confidence as consumers, partly because they have had poor access to products and services previously.[76]

2.96      Similarly, the Multicultural Disability Advocacy Association of NSW is of the view that 'the idea of shopping around for services will take a significant period of adjustment and support to perform'.[77]

2.97      The NDIA recognises that 'for many participants, this is their first opportunity to exercise choice and control over their supports, and it may take time and a more mature and vibrant market for them to feel confident to explore, negotiate and change providers'.[78]

Rising inequalities

2.98      The PSRG undertook research, which highlighted that factors that are well-recognised as driving inequalities such as age, gender, socioeconomic status, residential location and household structure are further constraining potential for choice and control for some NDIS participants.[79]

2.99      Catholic Social Services Australia (CSSA) and it members are very concerned that the system is producing 'significant inequalities between participants who have the capacity (or support) to navigate the market system and those who do not'.[80] In particular, participants with 'complex needs or without informal support are being left behind'.[81]

2.100         Flinders University also pointed that that there is 'a real risk of cumulative disadvantage and inequity despite the principles of the NDIS' as some participants or their families do not have an understanding of the range of interventions and services.[82]

Capacity building

2.101         In this context, directing more resources towards capacity building is vital to enable participants to exercise choice and control and engage with the marketplace.

2.102         Family Advocacy recommended that 'the NDIA put more resources into supporting family members and participants to engage in the marketplaces of their choosing'.[83] In order to do this, 'stronger capacity building for participants to pursue these opportunities and to understand the process of self-management is necessary'.[84]

2.103         Similarly, Brotherhood of St Laurence is of the view that 'further investment in capacity building and awareness building should be a focus of the NDIS, through LACs and ECEI services, and through continuous investment in building peer support and advocacy networks'.[85]

2.104         The Community and Public Sector Union (CPSU NSW) is of the view that defunding of advocacy has decreased the ability of participants to be able to navigate existing and new disability markets.[86]

Committee view

2.105         In light of the evidence received to date, it appears that exercising choice and control is far from being realised for many participants.  The committee acknowledges that the transition to a new market-based system is a radical change for participants. There is no doubt that it will take time for some participants to become confident and informed customers. However, there is a clear lack of direct support and assistance available to participants to build their capacity to engage in and benefit from the new system. Indeed, simply having access to a market does not equate having choice and control. Market access alone is not sufficient to allow participants to make informed choices.

2.106         Intervention is therefore required to create a participant enabling environment and enable people to exercise choice and control. To date, the NDIA, despite its lead role as market steward, has mostly failed to put in place the appropriate infrastructure and systems to create a participant enabling environment, especially for the more vulnerable and disadvantaged cohorts. This is creating a concerning rise in inequalities between participants. Alarmingly, this can also result in some people being left without access and provision of the necessary and reasonable supports they are entitled to. 

2.107         The NDIA must ensure that, through its Partners in the Community and the more systematic inclusion of support coordination in plans, supports and advocacy are available to all participants throughout their entire NDIS journey. The recommendations made by the committee in this chapter would assist in creating a participant enabling environment and ensure that the transition to a market-based system does not leave anyone worse off.

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