4.1
This chapter outlines key issues raised in evidence received by the committee since it tabled the last General Issues report in December 2020, in particular:
the external appeals process for NDIA decisions and transparency of outcomes
communication from the NDIA
participant agency and choice
the planning process; and
access to the NDIS for people with disability living in regional, rural and remote parts of Australia.
Appeals Process
Issues raised
4.2
As discussed in Chapter 3, the committee has previously considered evidence in relation to the Administrative Appeals Tribunal (AAT) appeals process and provided recommendations in relation to this matter. Subsequent submissions have also reiterated a number of concerns. Further, the committee heard that there has been an increase in the number of appeals before the AAT in relation to the NDIS.
4.3
The Public Interest Advocacy Centre (PIAC) stated that there has been a rise in the number of AAT appeals, with a ‘growing backlog of appeals awaiting NDIA case management’.
4.4
Mr Jamie Crew, National Director of Tribunal Services of the AAT, stated in a Senate Legal and Constitutional Affairs Legislation Committee estimates hearing on 26 October 2021 that the increase in median wait time for NDIS appeals from 18 weeks during the period 2019-2020, to 23 weeks in the period 2020-2021 could be attributed to a 21 per cent rise in workload.
4.5
PIAC contended that despite a majority of appeals resulting in alterations to NDIA decisions and the majority of appeals ‘being settled in favour of applicants’, there has been no significant changes made by the NDIA to reflect the principles that have been established by the AAT through the appeals process. PIAC argues that this lack of implementation limits the ‘effectiveness of the AAT as an oversight mechanism’.
4.6
A joint submission from 20 disability advocacy organisations to the inquiry outlined difficulties experienced by participants who engage in the appeal process, including navigating ‘complex and challenging’ processes, ‘increased dependence on informal supports’, and communication barriers and delays.
4.7
The joint submission further details the impact that engaging in the appeal process has had on participants:
…many people will also choose not to continue to challenge the decision [of the NDIA] through the AAT, due to concerns about the adverse effects it can have on their mental health….while the AAT is intended to be a relatively informal process, there are still many elements of the process that closely resemble a trial…Going through this process can be onerous for people who are already overwhelmed by their life circumstances. Many of the signatories’ [of this submission] report clients experiencing additional mental health challenges as a direct result of the stress and interrogating process. Clients have expressed suicidal ideations and have needed to seek additional psychological support as a result of being traumatised by the experience.
4.8
Spinal Cord Injuries Australia (SCIA) stated that there has been a consistent rise in demand for individual advocacy services to meet the rising number of external appeals to the AAT. SCIA further commented on the ‘adversarial’ nature of the appeals process, explaining that advocates have assisted clients in making complaints in relation to ‘inappropriate comments and unsubstantiated observations’, with some clients ‘breaking down following a case conference due to the confrontational approach adopted by NDIA legal representatives’.
4.9
SCIA further submitted that the requirement for functional capacity assessments during the appeals process gave rise to a number of issues in relation to the quality and accuracy of assessments:
4.10
…there is no regulation of the appointed assessors, nor is there oversight over the tools that the assessors use during assessments. Additionally, many of these independent assessments are conducted virtually, without consideration of the specific choice, circumstances and needs of the person being assessed. We have also heard anecdotes about people’s experiences undergoing these assessments in which assessors did not have a background in disability, or based on their prior history in other areas, such as personal injury assessment, misapplied the disability or early intervention requirements as set out under the NDIS act.
Proposed solutions
4.11
The joint submission recommended that the NDIA be involved with co-designing improvements to the accessibility of the AAT appeal process to ‘reduce complexity and simplify’ processes as well as improve communication of information processes to be inclusive and aid in accessibility.
4.12
The joint submission further recommended that applicants be provided with a list of advocacy organisations (in a list of accessible formats) where the applicant is engaged in any reviewable decision.
4.13
SCIA recommended that counsel representing the NDIA in AAT appeals processes (both in-house counsel and external) should be ‘audited to assess their compliance with model litigants obligations’ and receive training to gain a better understanding of interacting with individuals with disability.
4.14
SCIA proposed that the need for independent assessments during the appeals process should be determined on a case-by-case basis, accompanied by evaluations of the risk to participants undergoing the assessment process.
Greater transparency of AAT outcomes for NDIS participants
Issues raised
4.15
The Public Interest Advocacy Centre (PIAC) submitted that data from AAT outcomes should be published to allow for greater transparency and improvements in NDIA decision making. PIAC went on to state that despite recommendations adopted by the committee to this effect in a previous inquiry, AAT settlement outcomes currently remain unpublished by the NDIA.
4.16
The joint submission from advocacy organisations contended that the absence of transparency in relation to settlement outcomes results in less information being available to participants regarding supports they may be entitled to, an impairment of consistency in decision-making and limiting of ‘effective oversight of government administration’.
4.17
In the NDIS Planning Final Report (tabled December 2020), the committee made the following recommendation:
4.18
The committee recommends that the National Disability Insurance Agency develop and publish de-identified summaries of key themes arising from settlement outcomes in the administrative Appeals Tribunal.
4.19
In the Government response to the NDIS Planning Final Report (tabled 23 February 2021), the NDIA noted the above recommendation, stating:
The AAT generally publishes decisions in relation to the NDIS in accordance with its publication of decision policy…AAT settlements are not precedent-setting and all cases are considered on their individual merits.
Proposed solutions
4.20
PIAC asserted that the publication of AAT settlement outcomes would demonstrate a greater degree of transparency and ‘ensure more consistent and accountable decision-making by the NDIA’, as well as ‘allow participants to better understand the kids of supports that might be sought’.
4.21
The joint submission contended that transparency in relation to settlement outcomes would result in a higher degree of accountability and increased consistency in decision-making. The joint submission recommended that the NDIS make annual publications which include statistics relating to the number of plans which had been altered as a result of an internal NDIS review, and the number of plans which had been settled through the AAT process.
Communication issues and complexity associated with navigating NDIS systems and processes
4.22
The committee heard that many participants experienced difficulties understanding the processes associated with accessing the scheme, as well as difficulties in engaging with NDIS representatives at various stages of being involved with the scheme.
Issues raised
4.23
In explaining her experience with seeking access to the NDIS, Ms Heather Hall described the process of seeking access to the NDIS as ‘difficult to navigate’ and ‘highly bureaucratic’ and noted slow response times.
4.24
Ms Jenny Spiers stated that some participants may experience issues accessing the scheme, in particular where individuals may lack ‘the language or cognitive skills to navigate it [the scheme]’ or where individuals don’t have support systems to provide assistance. Ms Spiers described some examples of participant experiences with the scheme including ‘lack of communication about plans and plan reviews’, ‘long delays with equipment approvals which place the participant and their support staff at risk’ and report formats changing with minimal notice and being ‘repetitive and cumbersome’.
4.25
Disability Advocacy NSW submitted that many individuals in rural, remote and regional areas reported difficulties ‘accessing and communicating with NDIS staff’ in addition to long wait times and inconsistencies across the board with service provision.
4.26
One NDIS service provider suggested that barriers were present at varying levels of access including applying for the NDIS, and also in the planning stages. In relation to barriers in applying to the NDIS, the submitter stated that they found the process was difficult to navigate as an experienced health professional, and that is was likely to be significantly more difficult to navigate for individuals who may be experiencing mental illness and are not in a position to ‘advocate for their entitlements thus ensuring they will fall through the cracks’.
4.27
Occupational Therapy Australia told the Committee that a lack of effective communication from the NDIA to participants and service providers resulted in issues including ‘inefficient processes and delays in the provision of vital assistive technologies to participants.’
Proposed solutions
4.28
HammondCare suggested that the reporting process be streamlined to prevent care providers from having to duplicate reporting practices for NDIS participants.
Technology assessments
Issues raised
4.29
Occupational Therapy Australia (OTA) detailed issues experienced by participants in relation to the technology assessments process, including the receipt of assistive technology applications, application processing times, and service providers not being made aware when equipment is delivered, giving rise to ‘professional liability risks’. While OTA acknowledged that requests should be considered against the necessary criteria, the organisation contended that ‘a failure to provide clear justification for decisions only heightens the likelihood of unsuitable requests being repeated.’
4.30
Ms Kerrie Mahon, Chief Executive Officer of Montrose Therapy and Respite Services supported the principle of providing clinical justification for prescribed technology, but submitted that the extent of justification required presented challenges for both the organisation participants. Ms Mohan stated:
The burden of the administration around that [technology assessments] has recently stepped up, and a technology assessment can now take up to five hours of justification time. Some of this justification is for technology which is so obvious it is hard to find a clinical peer reviewed paper that even says, for example, why a person who can’t stand needs a hoist, or why a participant needs a high-low bed…and then the cost of this needs to be passed on to the participant, simply to keep our services running. Unfortunately, participants don’t have that allocation of funds in their plans to cover the cost of the assessments, which are mandatory for us to provide…I don’t mind providing the justification, but it just needs to be what is reasonable and clinically possible to provide.
Proposed solutions
4.31
Ms Mahon contended that a review should be conducted in relation to the technology assessment process to ensure that the requirements are ‘reasonable’.
4.32
OTA made the following recommendation regarding the rejection of requests for assistive technology:
Clear and consistent reasoning on why claims are rejected would allow occupational therapists to do their work more effectively and efficiently…this would reduce the workload for NDIA case managers as well as occupational therapists, and allow the timelier approval and implementation of assistive technologies for participants. Moreover, clear and consistent reasoning behind the rejection of claims by the NDIA would help manage participant expectations and facilitate the development of alterative solutions.
Lack of focus on participant needs and participant choice and agency
Issues raised
4.33
In her experience of navigating the NDIS process, Ms Heather Hall stated that she found the system to be suited to a particular group or demographic of participants and that she was unable to have her specific needs met. Ms Hall submitted that the system is:
…designed to cover the needs of the frail rather than someone like me who is determined to remain as independent and as active as possible to ensure I make best use of my remaining potential. I am confronted with a process…which deprives me of effective control over how I achieve these goals for myself…the type of support services and assistance I require need to be tailored to my quite specific needs.
4.34
Blind Citizens Australia (BCA) expressed concern that communication regarding participants is often directed at support people such as family members, with an assumption that ‘they will also be the person making decisions, not the person with disability.’
4.35
The Villamanta Disability Rights Legal Service (Villamanta) argued that individuals with a disability should receive support to exercise their own choices:
People with disability should be supported in all their dealings and communications with the Agency…so that their capacity to exercise choice and control is maximised in a way that is appropriate to their circumstances and cultural needs.
Proposed solutions
4.36
Ms Heather Hall stated that she would derive more benefit from the scheme if the services and equipment available were more ‘individualised’ and could better reflect her specific needs.
4.37
BCA recommended that the NDIA ‘ensure all communication and information to participants is in an accessible format, and in the preferred format of a participant’.
Supporting resources and information for carers
Issues raised
4.38
Accommodation and support organisation Lavender House stated that many parents and carers ‘lack the knowledge and skills to effectively navigate the NDIS registration, plan renewal or appeal process’, and that many families ‘report being disenfranchised or disempowered through dealings with support services, NDIS staff and past experiences with DSQ [Disability Support Queensland]’.
4.39
Lavender House went on to say that the organisation invests time and resources to provide support to parents and carers employing an individual full-time, solely to manage parent and carer communication, without compensation as the NDIS does not compensate providers for parent and carer support services.
4.40
Mr Michael Burke, Director of Lavender House made the following statement in relation to the impact on services attempting to meet the needs of carers:
…it’s an unaddressed issue that families and carers need greater support when the participants are accessing NDIS services. I don’t think this is being addressed anywhere, but the demand is high. We try to meet that demand, but it’s very taxing on our service provision.
4.41
In her submission, Ms Upenyu Matipano provided a case study which demonstrated the ‘limited information and resources’ that were available to carers. In the case study, this lack of information resulted in the development of a plan for a participant which failed to adequately accommodate some of the participant’s needs.
4.42
Mr Christopher McCarthy, Chief Executive Officer of the Hear and Say Centre for Deaf Children Limited, stated that the individuals that were ‘most in need of support of the system’ were often ‘the least equipped to navigate the system.’ Mr McCarthy contended that this not only placed stress and pressure on the families of children, but also had a ‘flow-on effect’ to the children.
4.43
Mrs Emma Rushbrooke, Clinical Director of the Hear and Say Centre for Deaf Children Limited, outlined the difficulties experienced by some families when managing an NDIS plan:
…we have had a number of families who have ended up with a self-managed plan and didn’t actually understand what that meant and the requirements that they had to follow through with payments and managing those plans. It was concerning to us that they didn’t seem to understand all that was required, particularly those from the cultural and linguistically diverse populations. It may be something that is better managed with information that’s provided at the time the choice is made.
Proposed Solutions
4.44
Mrs Simone Burke, Associate Director of Lavender House, suggested that although Medicare funded psychology and medical services were available to carers, these carers sometimes didn’t have ‘the mental strength’ to seek access to these supports. Mr Michael Burke, Director of Lavender House, contended that carers were ‘hesitant to look at options available to them’ and that the service engaged in a ‘hand-holding process’ of consulting with services to assist carers and participants. Lavender House, who provide an in-house liaison to communicate with participant families and carers, proposed that the NDIS make external resources available to provide support to families and carers. Lavender House also proposed that provisions be made to allow providers to receive compensation for support provided to families and carers.
4.45
Ms Matipano made recommendations aimed at better informing carers, including that the NDIS 'provide nationwide information sessions for parents and carers….to learn more about the services available to them', and that the NDIS 'provide families with independent information and preparatory guides/leaflets about the NDIS that is easily accessible…'.
4.46
The committee notes that there are currently some online resources available on the NDIA website to assist families and carers.
Qualifications of planners
Issues raised
4.47
One service provider stated that a key barrier in the development of participant plans is that the planners provided often do not have the relevant understanding of the conditions experienced by participants and therefore, in some circumstances, can unintentionally cause harm. The submitter contended that a lack of health literacy among staff could result in difficulties when it comes to translating critical information.
4.48
Mr Alistair Morton, a physiotherapist, stated that some NDIS planners did not have the necessary clinical knowledge or skills to make decisions of clinical nature, which can have an impact on funding.
4.49
Access Care Network Australia (ACNA) stated that while the NDIA provided useful resources on their website to assist participants in preparation for planning meetings, the outcome of planning sessions relied substantially on ‘the setting and skill of the assessor’.
4.50
Blind Citizens Australia (BCA) raised concerns regarding inconsistencies in the approaches of planners in the planning process, noting ‘the influence and long-term impact planners can have on the outcomes for participants’.
4.51
BCA further discussed the planning process in relation to the experience and qualifications of individual planners and the impact of this on the planning process:
We note that a planner who has not had any in-depth training or education about blindness or vision impairment will not be able to provide an appropriate level of insight for an NDIA participant who is blind or vision-impaired. Specialist training… will help ensure planners and LAC partners have a greater understanding on the needs and supports for people who are blind or vision impaired.
Proposed solutions
4.52
Mr Alistair Morton suggested that individuals making determinations or providing assessments should be ‘qualified professionals with specific qualification in disability or health’ as required.
4.53
BCA recommended that NDIS staff and partners attend training, developed using co-design processes, on content specific to the ‘needs of people who are blind or vision impaired’.
4.54
Access Care Network Australia (ACNA) argued that creating an effective plan relies on the assumption that ‘every person knows what they need to have a better life and has the skills to create solutions for themselves’ and that the planning should facilitate and assist participants in realising these goals. ACNA states that the planning process should provide participants with an active role in developing the goals and strategies within plans.
4.55
ACNA described several qualities that the organisation believes are necessary to take into consideration during recruitment of processes for planners and which can differentiate a good planning experience and outcome from a bad planning experience:
Their ability to work inclusively – to respond appropriately to diversity by having a person-centred approach, understanding the impact of historical context, being aware of any unconscious bias and respecting cultural beliefs.
Self-efficacy and self-awareness – to ensure planners operate within their scope of practice and seek the input of others when it is beneficial to the person requesting support.
Flexibility – to adjust their approach in response to the needs of the participant, based on the input of significant others and referees and observed activities in the home.
Solution focused – developing strategies by observing the environment, abilities and challenges and listening to the person’s story to suggest ways to overcome problems and challenges.
Safety focused – having the ability to recognise signs of emotional, psychological, physical, or financial abuse, harm or neglect and act in accordance with legislation ad best practice.
Ability to identify hazards and risks as they relate to the person and communicate mitigation strategies while ensuring dignity of risk is maintained.
Government view
4.56
In the NDIS Planning Final Report (tabled December 2020), the committee made the following recommendation:
The committee recommends that when conducting recruitment processes for planners, the National Disability Insurance Agency give greater preference to candidates with experience or qualifications in allied health or disability related areas.
4.57
In the Government response to the report (tabled 23 February 2021), the Government supported this recommendation in principle, stating:
The NDIA recruits planners based upon the APS employment principles, taking into account all the qualities of a job applicant to determine their suitability for the role…The NDIA also considers formal qualifications in allied health or disability and lived experience of disability to be highly desirable in planner recruits. Some planners, such as those within the Early Childhood Early Intervention (ECEI) stream, are required to have allied health qualifications, such as psychology and Occupational Therapy.
Other issues relating to the creation and management of participant plans
Issues raised
4.58
The Australian National Audit Office (ANAO) concluded, citing its report published in October 2020, that 'the NDIA does not yet have appropriate controls to ensure supports in participant plans are "reasonable and necessary"'. The ANAO continued to state that while the NDIA had some mechanisms in place ‘for oversight and control of decision-making for participant plans’, ultimately it determined that the NDIA doesn’t currently have the necessary oversight frameworks to ‘ensure the supports in participant plans are reasonable and necessary’.
4.59
The ANAO made three recommendations in its report which were broadly designed to provide greater support in planning processes as well as facilitate better consistency across planning processes. Of the three recommendations provided, the NDIA agreed to two recommendations, and agreed and completed the third recommendation.
4.60
The Villamanta Disability Rights Legal Service (Villamanta) details circumstances experienced by NDIS participants where the participant’s plan is reviewed and the management of funding support processes are altered, without informing the participant about the change. Villamanta states that this results in detriment to participants who have ‘engaged services under a service agreement’ and have no way to pay the service which ‘has a contractual right to payment’ for services provided.
4.61
Villamanta further contended that when a new plan is created (such as through plan reviews), the funding support process will revert to a default position, and so this change in funding support process does not constitute an active ‘decision’ but rather an administrative oversight. Villamanta provides some detail regarding the barriers participants experience in amending these administrative errors:
An internal review can take months. Meanwhile the participant has no access to supports, and has a debt they have no way of paying. For some participants this is literally life-threatening due to their reliance on support…for other participants this situation leads to a decline in wellbeing and coping, and can result in outcomes such as … guardianship applications and loss of employment.
4.62
Spinal Cord Injuries Australia described the NDIS planning process as ‘onerous’ in relation to both its frequency and the amount of information that participants are required to gather in relation to ‘each level of support needed’.
Proposed solutions
4.63
Villamanta provided several suggestions including changing the ‘default’ funding management option to reflect individual participant plans and development of provisions that would allow participants to make changes to their funding management process online.
4.64
Spinal Cord Injuries Australia made the following statement regarding how the planning process can be altered to improve the experience of both participants and planners:
The planning process needs to be streamlined particularly where a participant has stable support needs. Longer plans of two to three years are a welcome improvement. Further to this, allowing plans to be renewed or extended for another similar period would simplify the process, when needs are consistent. This could be done with a simple check in with the participant by the NDIS delegate or LAC. NDIS plans, and specifically the funding allocation needs to work in a way that us more attuned to the needs of each participant; shorter plans for those with fluctuating needs, longer plans for those with stable needs. And the flexibility for plan renewals or extended plans for another equal time period when desired. This would also reduce the workload of NDIS planners and delegates. The only time this would change, is where there is a change in circumstances for the participant, necessitating a plan review.
Regional, rural and remote access to the NDIS
Issues raised
4.65
Disability Advocacy NSW (DANSW) described the implementation and performance of the NDIS in rural and regional communities as ‘complex, challenged and even problematic’ and that individuals with disabilities living in regional and remote areas are ‘double disadvantaged’. DANSW argued that a key issue of the effectiveness of the NDIS in regional, rural and remote areas is the availability of services, and that ‘thin and absent’ markets have been a significant consideration in contributing to the disadvantage experienced by individuals in these areas.
4.66
DANSW submitted that the lack of available services can result in detrimental effects to NDIS participants including:
creating opportunities for exploitation, as individuals who aren’t satisfied with a service often have limited alternatives in rural, remote and regional areas;
a reliance on ‘poorly trained and unqualified staff’ due in part to the difficulty of hiring qualified individuals in regional, rural and remote areas; and
individuals falling ‘through gaps’ in the system.
4.67
Ms Jenny Madden, General Manager of Community Solutions, said that individuals living in regional and remote areas experience challenges around lack of choice in NDIS providers, compared to people who live in cities.
4.68
Spinal Cord Injuries Australia stated that participants living in rural and remote areas felt that they were ‘very low in the priorities’ as a result of poor communication.
Proposed solutions
4.69
DANSW made a number of recommendations aimed at improving access to services for participants in regional, rural and remote areas including suggesting that the NDIA and Department of Social Services (DSS) ‘commits to supporting and strengthening local capacity of rural and remote communities’ and that the NDIA and DSS work ‘collaboratively with other service systems to identify and understand the unique service demands and gaps within individual communities’.
Other issues raised
4.70
Additional issues identified by submitters included:
The ‘critical role of registered and enrolled nurses’ going largely unrecognised in the NDIS, and the role that qualified nurses could play in addressing the ‘urgent need of a specialised clinical workforce with the skills, training and education to manage specific types of disability’;
eligibility for NDIS support including ‘significant gaps in the support available to older people as compared to those covered by the NDIS’; and
the discontinuation of services for neurodiverse children at the conclusion of the early intervention period.
Committee view
4.71
The committee notes with concern that many of the issues discussed in this chapter have caused difficulty and distress for NDIS participants and people with disability seeking to engage with the NDIS, in particular, the difficulties associated with seeking review of NDIA decisions in the AAT, in communicating with the NDIA, and through navigating the NDIS.
4.72
Several of these issues have been more thoroughly examined by the committee in its previous inquiries and reports. For example, the committee considered matters relating to the transparency of AAT outcomes, qualifications of planners and other matters regarding the creation and management of plans in its NDIS Planning Final Report. The NDIA's approach to communication with participants and providers was also considered in more detail in the committee's previous general issues report. As these matters continue to cause concern for people with disability and their families and supporters, NDIS providers and a range of representative organisations, the committee proposes to maintain a watching brief on the above issues, and encourages the Government to give close consideration to the matters raised in this chapter.
4.73
The committee will also continue to consider matters relating to access to NDIS services in regional, rural and remote areas in its inquiry into the NDIS workforce. Evidence indicating concerns about this matter have also been received in relation to the committee's current inquiry into NDIS implementation and forecasting, as noted in Chapter 5.
4.74
If further evidence indicates that the matters outlined in this chapter continue to be of concern for stakeholders, the committee may consider these in more detail in the future.