Submission: Capability and Culture of the National Disability Insurance Agency
Parliamentary Joint Standing Committee on the NationaL Disabilitv Insuranee Scheme
People Wlth Dlsabllltles (WAlnc.
Chair: Yhna Lueas
Cheif Executlve Offleer: Brendon CuUlanan
Ctty Wesr Lo tte ries Hous e , 23/2 Delhl S t, We st Per th, WA 6005
Te l : (O B ) 94Z O Z79
Cou ntry Ca ll ers: IBOOO I9B BBBI Web s ite: ww w .pwd wa.or g
Choice and control
Choice and control is central to the NDIS – it means that, for the first time, people with disabilities can be in the driver’s seat of their own lives. But in order for choice and control to become more than a mantra, people need a vision and aspiration for what is possible, and encouragement and support to realise those aspirations. - Dr Rhonda Galbally, former NDIA Board Member, at 2016 Sambell Oration for the Brotherhood of St Laurence
A. Introduction
By way of e-mail dated 16 September 2022, People with Disabilities WA (PWdWA) was invited by the Parliamentary Joint Standing Committee (Committee) on the National Disability Insurance Scheme (NDIS) to make a written submission addressing issues that are of interest to PWdWA in relation to:
(a) the capability and culture of the National Disability Insurance Agency (NDIA), with
reference to operational processes and procedures, and nature of staff employment;
(b) the impacts of NDIA capability and culture on the experiences of people with disability
and NDIS participants trying to access information, support and services from the
Agency; and
(c) any other relevant matters.
We thank the Committee for this invitation and provide our written submission in relation to the capability and culture of the NDIA in this paper.
B. Summary of Recommendations
Our list of recommendations in relation to the culture and capability of the NDIA are below. A detailed discussion of these recommendations is provided in section ‘C. Issues’ of this submission.
Recommendation: Restructure the NDIA
The NDIA needs to be restructured so that Participants may engage with the agency appropriately and are also able to navigate the NDIS effectively.
Recommendation: Top – Down Change of Culture and Ethos for the NDIA
A major, top - down change of culture and ethos in the NDIA is required to address current embedded adversarial culture of mistrust and disrespect of Planners towards Participants and vice versa.
Recommendation: Top – Down Change of Training and Work Practices for NDIA Staff
There is an acute need for Planners with training in specific disabilities. There needs to be increased training for NDIA staff so they may better address the concerns of service users.
Planners need to be given enough time to properly review Participant documents and evidence, and to meet with Participants.
2
Recommendation: Changes to Model of Planner / Participant Interaction and Relationship
The interaction and relationship between Planners and Participants need to be collaborative – not combative.
All communications between the NDIA and NDIA stakeholders are done with dignity and respect, using supported decision - making practice.
Recommendation: Changes to Hiring and Capacity Building Practices
The NDIA needs to hire more people with disability.
NDIA staff need training in empathy, different kinds of disability and how disabilities interact.
Recommendation: Put in Place a Specialist Evidence Team for Planning
As is being piloted in relation to access request appeals, the NDIA needs to create a team purposely designed to review and consider evidence and to work with the people providing evidence if the NDIA requires further information for planning purposes.
This staff would have disability – specific expertise to enable them to appropriately review and consider the evidence provided.
Recommendation: Put in Place Specialist CALD and First Nations branches
The NDIS needs to put in place culturally and linguistically diverse (CALD) and First Nations branches, to engage appropriately with these groups and to improve their access to the NDIS.
Recommendation: Provide Guidance about the Evidence Needed for Planning
The NDIA needs to develop plain English policy / guidance about the kinds of evidence they need provided and when, and NDIS Participants need to understand the importance of providing evidence to support their plan requests.
Recommendation: Regular Audits of Plans Prepared by Planners
Plans prepared by Planners should be audited regularly to ensure a high standard of Participant service, evidence review, and plan preparation – as well as equal and unbiased treatment of Participants.
The NDIA needs to do a more regular auditing process for providers, especially if there has been a complaint made against a Provider for a serious misdemeanour for mismanagement of plan funds.
Recommendation: Improved Transparency
To ensure a duty of procedural fairness is met and there is transparency in decision making by NDIA staff, Planners need to send plans to Participants for review and response before their plans are sent away for approval.
When there is an internal review, substantial reasons need to be provided.
NDIA Planners need to provide Participant Information Access requests to Participants, so they have access to reasons by NDIA for decisions about plans.
Recommendation: Grace Period for Transition from Centrelink / disability support payments to NDIS
There must be a grace period between people transitioning from Centrelink / a disability support pension to NDS.
Recommendation: Changed Model of Interaction in the Administrative Appeals Tribunal
There needs to be a change from the currently imbalanced and unjust adversarial system to an equal and equitable forum for Participants.
B. Background
Who we are
PWdWA is the lead member-based disability advocacy organisation representing the rights, needs, and equity of all Western Australians with a physical, intellectual, neurological, psychosocial, or sensory disability. We do this via individual and systemic advocacy. We provide access to information, and independent individual and systemic advocacy with a focus on those who are most vulnerable.
PWdWA is run by and for people with disabilities and aims to advocate for the rights and empower the voices of all people with disabilities in Western Australia.
Purpose of the NDIA
The NDIA has been put in place as an independent statutory agency to implement the NDIS, with a purpose to ‘support a better life for hundreds of thousands of Australians with significant and permanent disability’.1
To achieve its aim in providing a better life for Australians with a disability, the NDIA is guided by a set of core aspirations. These include:
- a quality experience and outcomes for participants; and
- a high-performing NDIA.
Despite these high - level aspirations, the experience and outcomes for many NDS participants (Participants) is negative and suboptimal.3 The NDIA is struggling – and as evidenced in this submission, often failing - to meet its legally mandated role, as provided by the provisions of the National Disability Insurance Scheme Act 2013 (Cth) (NDIS Act):
- to provide support and assistance to support people with disability to exercise choice and control in the pursuit of their goals; and
General Concerns about the Capability and Culture of the NDIA
The NDIA plays a singularly important role in the lives of over 4.4 million people with disability in this country. For 1 in 5 Australians, the NDIA has the unequalled power to make decisions “about who can access the NDIS based on the information they [person with a disability] provide about their disability and how it impacts on their day-to-day life.”
Since its implementation significant concerns have existed about the culture and capability of the NDIA, regarding its ability to uphold Participant’s right to exercise choice and control in pursuit of their goals.
There is now an acute need from the community and government for action to be taken to significantly improve the capability and culture of the NDIA. The agency must be corrected so to enable the NDIA to meet:
- its purpose to provide support and assistance to support people with disability to exercise choice and control in the pursuit of their goals - as mandated by legislation; and
- its commitment to the Australian community and taxpayers who fund its activities to provide a service that is:
- transparent;
- responsive;
- respectful;
- empowering; and
- connected.
Common criticism of the culture and capability of the NDIA
Common criticism of the culture and capability of the NDIA has focussed on a range of issues including arbitrary and increased cuts to Participant funding; unrepresented Participants having to fight lawyers and barristers engaged by the NDIA over its cuts to their support payments; and a lack of trust in the NDIA and its staff due to a culture of inappropriate, misinformed and disrespectful treatment of Participants.
In sum, there is significant, wide-spread concern in the disability sector and among the general public that the NDIA needs to be fixed, because:
‘The NDIA is not enabling choice and control for people with disabilities.’
PWdWA welcomes the opportunity to comment on this issue and also other concerns with the capability and culture of the NDIA experienced by PWdWA clients and advocates (Advocates).
C. Issues
1. Operational processes and procedures, and nature of staff employment
NDIA operates like a commercial insurance company
NDIA purports to support choice and control, with person centred service for Participants. It is recognised that NDIS planners (Planners) are required to place the Participant at the centre of the decision-making process and as per the requirements of the NDIS Act, determine reasonable and necessary supports.
However, there is overarching agreement in the sector that this is not the case. Instead, the operational processes and procedures of the NDIA are that of a commercial insurance company with a government mandate to minimize costs and work within strict budget guidelines.
Current Challenges Facing the NDIA
Currently the NDIA is recuperating from a cost overrun and are in a cost saving mode. There is now greater pressure on less NDIA staff, under increased workloads, to manage an expanding user base – resulting in substantial diminishment in person centred services.
Due to the current underlying issues with the culture and capacity of the NDIA, Participants have reported that the NDIA doesn’t feel like a people-oriented organisation. Instead, it is an institution that regularly causes stress and exhaustion for people trying to access much needed assistance and services.
NDIA is a large government bureaucracy that is complex to navigate
NDIA has made a commitment to provide a quality experience and outcomes for Participants, yet it has become so complex that it is too difficult to navigate for people who want to use it. In a recent study, it was found that 96% of the metro-based research group needed assistance from other people to navigate the planning process.
Large bureaucracies, like the NDIA, can be stressful for people to deal with, especially for Participants with psychosocial/intellectual disabilities. Advocates report that beginning from their initial contact with the NDIA, people are stressed and apprehensive they won’t do the right thing and they don’t know the rules in such a large and complex organisation – a perception shared by Participants across the country.
Planners are employed by the NDIA who lack the appropriate skill set
Advocates and sector stakeholders are concerned that Planners are consistently employed by the NDIA who have limited experience working in the disability sector28 and lack knowledge about Participants disabilities and the scope of NDIA assistance.29
This has resulted in, among other things, Planners not understanding or believing the impact of mental illness on physical functioning,30 and drastic changes to funding amounts with Participants reporting a need to go through an ‘very arduous, very combative’ process to get the appropriate amount.31
Planners are not appropriately trained by the NDIA
There is an assumption by people working in the NDIA system that people with a disability who require NDIS support have the knowledge and capacity to interact with the system processes, but this is not necessarily the case.32 Participants need to work with NDIA staff and Planners with solid understanding of the disability field and the kinds of supports available.
However, many Planners have not been appropriately trained by the NDIA about different kinds of disabilities, medical reports and available supports.33 For example, a substantial number of NDIA staff and NDIS decision makers have limited understanding of mental illness due to lack of training, availability and capacity building.34
As a result, there is inconsistent messaging from NDIA staff about NDIS processes and supports, and not enough support from NDIA staff to help Participants understand plans or to provide assistance about how to start using them.
Many NDIS plans are reviewed / contested by Participants because:
- the planning has become ‘highly convoluted and enacted without and enacted without a clearly defined process’; and
- the Planner has not understood the context or needs of the Participant.
Planners are under unrealistic time and KPI constraints, leading to poor plans for Participants
The staff of the NDIA complain about expectations on them to get plans out in a very tight time frame. Due to this and other stress causing factors such as a lack of appropriate training, the attrition rate in NDIA is very high.
It is the experience of Advocates that Participants are pressured to do planning meetings in very tight time frames (roughly 1 hour on average) even if more time is required due to context of disability and supports.
PWdWA CASE STUDY: KPI Constraints for Planners
An Advocate attended a planning meeting that was facilitated by a local area coordinator planner (LAC Planner). During the meeting, it became evident that the LAC Planner had not read any of the
Utilisation of individualised budgets by people with psychosocial disability within Australia’s National Disability Insurance Scheme - Devine - 2022 - Social Policy & Administration - Wiley Online Library [Introduction – para 7]; CPSU, ‘NDIA workers across the country are sharing their reports around the unreasonable workloads within the agency and how it has impacted their ability to work well’ (n.d.) viewed 14 October 2022 at <NDIA. Your stories. (cpsu.org.au)>35 Carey, Malbon, Blackwell, ‘Administering Inequality? The National Disability Insurance Scheme and Administrative Burdens on Individuals’ (22 July 2021) (pg 9) viewed 18 October 2022 at Administering inequality? The National Disability Insurance Scheme and administrative burdens on individuals (csi.edu.au) 36 Dickenson, Rangi, Huska, Disney, Yang, Barney, Kavanagh, Bonyhady, Dean & McAllister, ’Nearly gave up on it to be honest: utilisation of individualised budgets by people with psychosocial disability within Australia’s National Disability Insurance Scheme’ (2022) [Para .3.4]viewed 15 October 2022 at ‘Nearly gave up on it to be honest’: Utilisation of individualised budgets by people with psychosocial disability within Australia’s National Disability Insurance Scheme - Devine - 2022 - Social Policy & Administration - Wiley Online Library 37 Carey, Malbon, Blackwell, ‘Administering Inequality? The National Disability Insurance Scheme and Administrative Burdens on Individuals’ (22 July 2021) (pg 5) viewed 18 October 2022 at Administering inequality? The National Disability Insurance Scheme and administrative burdens on individuals (csi.edu.au) 38 Dickenson, Rangi, Huska, Disney, Yang, Barney, Kavanagh, Bonyhady, Dean & McAllister, ’Nearly gave up on it to be honest: utilisation of individualised budgets by people with psychosocial disability within Australia’s National Disability Insurance Scheme’ (2022) [Para 4.3.3] viewed 15 October 2022 at ‘Nearly gave up on it to be honest’: Utilisation of individualised budgets by people with psychosocial disability within Australia’s National Disability Insurance Scheme - Devine - 2022 - Social Policy & Administration - Wiley Online Library [Introduction – para 7] 39 University of Melbourne, ‘Choice, control and the NDIS: Service users’ perspectives on having choice and control in the new National Disability Insurance Scheme’(May 2017) (IV1) [28] viewed 2 November 2022 at Choice-Control-and-the-NDIS.pdf (unimelb.edu.au); CPSU, ‘NDIA workers across the country are sharing their reports around the unreasonable workloads within the agency and how it has impacted their ability to work well’ (n.d.) viewed 14 October 2022 at <NDIA. Your stories. (cpsu.org.au)>39 People with Disability Australia, ’Issues to do with the NDIS’ (nd) viewed 11 October 2022 at Issues to do with the NDIS - People With Disability (pwd.org.au)
Participant reports that had been submitted 6-8 weeks earlier because the LAC Planner was asking questions that had been answered in the reports.
The person kept directing the LAC Planner to her reports. The LAC Planner stated that they do not get any time to read or review any of the reports submitted, and they go into these planning meetings without any knowledge of the case or the person. The LAC Planner further stated that there is a pressure to conduct 8 planning meetings per day, giving them an hour maximum for each meeting.
The person asked if they could schedule a second meeting to continue the planning meeting if they run out of time, to which the LAC Planner stated that they do not have the ability to do second meetings due to strict time pressure to submit their work and meetings being booked several weeks out.
The meeting had to stop at the one-hour mark, with some goals and supports not fully explored. As expected, the NDIS Plan was under-funded, and the person had to make a request for a Review of a Reviewable Decision and wait another 9 months to have those supports included.
Planners not doing appropriate review of information and providing automatic replies
The experience of Advocates and the disability sector is that Planners are providing replies to queries and planning support that is based on templates. This is due to time constraints and lack of understanding about the relevant disability and context.
Advocates also report, as do NDIS stakeholders, that Plancers don’t read through information and evidence that is provided to them about a person, which leads to time consuming review and appeals processes.40
Additionally, the new national escalation process for planners using dedicated case managers is not well understood. The NDIA should provide Advocates with training in relation to the relevant process.
UnitingCare WA Case Study: Planners not reading information and evidence provided
An Advocate recently supported a family through a NDIS internal review process for their 15 year old son, the Participant. The Advocate liaised with the NDIS Internal Review Officer, the Support Coordinator, several allied health professionals and the Participant’s parents, who are the plan nominees and decision makers. This group gathered evidence based on the recommendations provided, which addressed the Reasonable and Necessary criteria for supports funded in an NDIS plan.
The Advocate and the support group were successful in all areas. The plan was almost tripled, and now includes previously un-funded elements such as respite for the participant, respite for his family (who also care for two other children), holiday support (the parents are self-employed), complex home modifications requiring a project manager and significant increases in support worker assistance and therapy support.
40 Joint Standing Committee on the National Disability Insurance Scheme, NDIS Planning Final Report ‘Chapter 6: The role of experts’ [para 6.1; para 6.7] (December 2020) viewed 15 November 2022 at < at Chapter 6 – Parliament of Australia (aph.gov.au)>
Planner’s main consideration is whether a support is ‘value for money’ and not whether a support is most appropriate for a Participant
The Advocate is also supporting the family to make a referral to the Complex Support Needs Team in the NDIS, a team designed to manage complex participants and ensure smooth implementation and progress through a multi-faceted plan and take some of the pressure off the parents. The mother of the plan emailed to say: Thank you for all your assistance, it was very much appreciated.
If the original evidence was read properly and taken into account by the Planner, the family would not have had to go through a lengthy appeal process, and their son would not have missed out on essential funding for so many months. In this case, the original Planner did not do their job properly, and the issue had to be escalated to a higher-level Planner to make the correct decision.
Planner’s main consideration is whether a support is ‘value for money’ and not whether a support is most appropriate for a Participant
Despite the NDIS Act requiring plans to be person-centred, self-directed and individualised,41 it is the experience of Advocates and the disability sector that in practice Planners are not determining whether a support is most appropriate for Participant but whether the support is ‘value for money’ within the NDIS.42 In the experience of Advocates, Planners are encouraged to provide excuses for why supports should not be given.
Across the sector, it is agreed that Planners are allowed too much personal discretion to value assess the funding amounts that are submitted for approval in a Participant’s plan. This is inappropriate given the limited knowledge of Planners of the allied health system and expert reports in general.43
Uniting Care Case Study: Planner’s main consideration whether a support is value for money and not whether a support is most appropriate for a Participant
An Advocate is currently supporting a 12-year-old boy with a rare medical condition and disability that impacts on his mobility and cognition.
Until recently the parents have lifted and carried the boy into the family car so they can travel to school or out and about. He uses a powered wheelchair which goes in the back of the car. Unfortunately, this isn’t possible now due to his size and ongoing musculo-skeletal issues that the parents are experiencing due to carrying the boy for so many years. A modified vehicle where he gets to stay in his wheelchair is the safest option and recommended by his therapy team.
This request for modifications to a car was originally rejected by the NDIS. Having gone through the internal review processes to no avail, the Advocates is now supporting the family with an external appeal at the Administrative Appeals Tribunal (AAT). After many months of stress and anxiety,
Advocate and the Family’s Experience
Advocate and the family have managed to overturn this original decision, and the modifications to the car have been accepted as reasonable and necessary. Unfortunately, due to the current market there is a 6 month wait for a car, and a further 4 months wait for modifications to the vehicle. This was not the case 18 months ago.
Now the family has to request a modified hire vehicle in the interim, which the NDIS are currently rejecting. If the original request had been accepted, the family would not have had to go through 18 months of turmoil and wouldn’t have to request a hire vehicle.
This young boy has experienced a decrease in his functional capacity over this time as he has not been able to participate fully in school or community activities. He has been house bound by this decision since the start of 2022 and has not been able to get to school, as there are no other alternatives to transport him. This will cost the NDIS much more in the future. It has already taken a human toll on the family.
At conciliation, the AAT agreed to fund a hire vehicle for the interim until the modified vehicle is available. The family waited almost 2 years for the original decision to be overturned, and for their son to be able to leave the house.
PWdWA Case Study: Planner’s main consideration whether a support is ‘value for money’ and
not whether a support is most appropriate for a Participant
A Participant had a late diagnosis of autism at age 15 but has had longstanding mobility issues as well. The individual received her first NDIS plan at age 16. The individual was 18 at the time of the request for additional support.
The Participant and her family had commenced genetic screening to determine if her disability, comorbidities - including mobility impairments, is linked to any additional diagnosis which has not been determined.
The individual had major hip surgery because of her difficulties with her mobility. Due to her disability and her resistance to change, the individual has taken considerably longer to recover from the surgery and requires additional support from the NDIS. Additional support worker assistance was requested as well as additional therapy support.
The Participant’s mother provided clinical justifications by way of reports at the NDIS plan review meeting, which were not considered when the plan was approved. The mother submitted an internal review and the request for additional support was rejected based on the NDIA reasons that the support was not value for money nor was it effective and beneficial [our emphasis].
The matter went before the AAT and at the very early stages of the proceedings additional physiotherapy support was approved. However, the NDIA suggested that the request for additional occupational therapy was a duplication of support. This was despite occupational therapy support being requested to address the individual’s mobility and occupational therapy support being requested for a different service provider to address emotional and social difficulties.
After providing a statement from the family to make it clear the level of support they were providing to the individual, as well as multiple reports from the occupational therapist with clinical justification for the additional support, the support was approved. This matter had been before the
Tribunal since early 2022 and during that time the NDIA provided a lawyer as well as a case manager
for each case conference.
Due to the length of time it took to get this matter resolved, the individual’s mother had to take extended time of work to provide the support to her adult daughter. PWdWA Case Study: Planner’s main consideration whether a support is ‘value for money’ and not whether a support is most appropriate for a Participant
Currently a Participant has terminal cancer and has months to live. She is confined to her home, has limited mobility and can’t do meal preparation.
Her plan has run out and originally the NDIA would not review it because she is terminally ill. Instead, she was told that because she doesn’t have long term goals or solutions the plan will not be reviewed.
Now a review has been pushed to March 2023 which is an unusually long waiting time, especially given the Participant’s terminal condition. The participant questions the good faith of the NDIA in the carrying out of its plan review process and setting of dates beyond her projected life span - which is known to the agency.
Planners do not provide draft plans to Participants when this is requested
To ensure required procedural fairness, Participants need to be able to:
- compare what has been requested with what has been approved; and
- ensure - before the submission of the plan for approval - that the supports the Participant requested be included are included in the plan.
Advocates have requested that Planner send the plan to Participant for comment before it is sent away for approval. However, when Advocates request a copy, the Planner says they will provide it, but they don’t – despite the risk for error in the final plan, and low levels of service delivery, because the Participant has not been allowed to view the plan.
Planners won’t give reasons for planning decisions that have been made by the NDIA
The experience of Advocates, when a plan is published or there is an internal review, is that there needs to be reasons that a Planner did something. Most Planners believe they don’t need to respond to a request for reasons about a planning decision made by the NDIA despite s 13(2) of the AD(JR) Act making administrative provision for requests.
44 See: National Legal Aid, ‘Putting people first: Removing barriers for people with disability to access NDIS
supports: Submission to the Review of the NDIS Act and the new NDIS Participant Service Guarantee’ (4
November 2019) pg 42, Recommendation 18, viewed 14 November 2022 at
Issues with Participant Information Access (PIA) Requests
Advocates report that the reasons given by Planners to approve the plan/ make amendments etc. are not specific or clear in the NDIA’s documentation of the approval process. This makes it more difficult to carry out an internal review.
In addition, participant information access (PIA) requests are taking significantly longer to process. This delays the review and appeal process and an outcome required for the provision of needed supports.
Planners are not held accountable for their mistakes
There is a significant body of evidence about Planner errors. This includes Planners putting incorrect information into plans, and mistakenly inputting names and disability type.
Despite this, Advocates report that in their experience that Planners are neither: held accountable for mistakes leading to unjust outcomes for Participants; nor replaced with Planners with an appropriate skill set.
This is despite numerous NDIA stakeholders calling for the NDIA to respond appropriately to complaints and improve accountability for Planner mistakes.
Impacts of NDIA capability and culture on the experiences of people with disability
and NDIS Participants trying to access information, support and services from the Agency
Lack of respect and trust for people wanting to be a part of the NDIS / Participants
Advocates report that because the NDIA operates as a commercial insurer, Planners have demonstrated a perspective, based on internal NDIA culture, that they are being defrauded by people wanting to be a part of the NDIS and also Participants themselves.
It is the experience of the Advocates that due to the overarching need for Planners to determine whether the requested supports are ‘value for money’ there is an assumption that Participants are lying and asking for more than is needed. As a result, Participants do not feel they are being heard by Planners and so often the priorities of Participants are dismissed or overlooked.
PWdWA Case Study: Lack of Trust and Respect
A Participant has autism and a permanent health condition. During their planning meeting, the Participant described how their autism had impacted their capacity to manage their condition.
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When asked for additional supports to help the Participant to effectively manage their condition, the NDIA Planner responded telling the Participant that they needed to be “truthful” about their actual support needs.
The Planner explained that the Participant could not get NDIS funding for the health condition, despite the fact that the supports requested were to manage how the Participant’s autism has impacted their capacity to manage their health.
It is the experience of Advocates that medical records are subpoenaed, and Participants are subject to inquisitorial questioning about requested supports. Planners don’t provide person centred service for Participants. Instead, they maintain and adhere to NDIA bureaucracy and ‘template’ responses.
Due to the current culture of the NDIA, which has been identified as being adversarial and causing harm, Participants feel that they have to ‘fight’ or ‘push’ in a ‘battle’ to get the supports they need because their support requests are not believed by Planners.52
PWdWA Case Study: Lack of Trust and Respect
A person was going through the access request process for both psychosocial disability and intellectual disability. She had had an accident at home and had to go to ICU in hospital for a week.
During that week, the NDIA assessor rang the person and wanted to discuss her access request with her. The person explained she was unwell and in ICU and asked the NDIA assessor to ring her disability advocate. The NDIA assessor said she would do that. The next day, that same NDIA assessor rang the person again. The person said she was in ICU at hospital and asked the NDIA assessor to ring her disability advocate. This did not happen.
On the third day, the NDIA assessor rang the person again. The person asked if the NDIA assessor had tried to call the person’s disability advocate. The assessor responded that NDIA do not communicate with advocates. The person said she would be discharged from hospital in 2 days and asked if the NDIA assessor could ring her on that day to continue the conversation. The NDIA assessor agreed. NDIA assessor never rang the disability advocate or the person again.
The person received a letter in the mail dated the third day she rang (where the NDIA assessor had agreed to wait until the person was discharged from ICU). In the letter, the NDIA assessor said that based on conversations with the person with disability and her disability advocate, there had been a refusal to provide further evidence and the person’s access request was denied.
To add, when the person and her advocate submitted the access request, they also submitted the third-party consent forms giving the advocate authority to act and speak on the person’s behalf to to the NDIS.
The advocate made a complaint to the NDIA CEO’s Office about this situation. The investigator told the advocate that they had actually received and “placed on the person’s file” the advocate’s authority, so the NDIA assessor should have seen and spoken with the advocate directly.
52 Yates, Hargrave, Malbon, Green ‘Women’s experiences of accessing individualised disability supports: gender inequality and Australia’s National Disability Insurance Scheme’ (2021) viewed 6 November 2022 at <Women’s experiences of accessing individualized disability supports: gender inequality and Australia’s National Disability Insurance Scheme - PMC (nih.gov)>
Power Imbalance
The culture and staff of the NDIA perpetrate an institutional power imbalance. It is the experience of Advocates that NDIA Planners and LAC Partners feel entitled to make all the decisions involved in planning. Participants have to their argue case and provide evidence that they need supports. This puts them in vulnerable position vis a vis the NDIA Planners, whose job is to judge and evaluate the veracity of the Participant’s position.
Planners working with Participants with a psychosocial disability talk to Participant and their Advocate as though they know what is best, in contrast to a requirement to treat people with disabilities as experts of their own disability.53
PWdWA Case Study: Power Imbalance
It is the experience of Advocates that NDIA Planners come in from a “I know your disability better than you” perspective.
One NDIA Planner had a daughter with same diagnosis of psychosocial disability as the individual that the Advocate supported. When the individual spoke about how her psychosocial disability impacted her every-day life, the NDIA Planner stated that her daughter did not experience the same difficulties therefore she could not ask for the supports - despite medical evidence to the contrary.
The power imbalance between the NDIA and Participants is enhanced by the requirement of Participants and Advocates to understand and speak the language of the NDIA in order to receive supports.54 As one Participant stated, ‘if you did not know the jargon you virtually got zilch’.55
There is a wide-ranging perception among sector stakeholders that there is no choice and control with the NDIA. 56 Instead, Participants have to take what is available because they are afraid their supports will be removed completely if they don’t.57
Power Imbalance in NDIA Decision-Making Processes
Due to the issue of power imbalance, many Participants believe that without self - advocacy, or advocacy assistance, they won’t get the supports they need:
I mean it’s fine, but if you had a white hearing man, then the power is there, and they don’t
understand disability on top of that, I feel very uneasy and passive and it’s a little bit like they
become the aggressor and I retreat.
- NDIA Participant, 2020
It is the experience of Advocates that Participants without family or formal advocates are disadvantaged with shorter meeting times, less access to information from the NDIA and less beneficial support plans.
Power Imbalance in the Administrative Appeals Tribunal
The ‘stark power imbalance’ present in the current system of appealing an NDIA decision is well documented and agreed to be an issue by sector stakeholders.
In the AAT, Participants and their advocates have to face lawyers and barristers - many of which don’t have a medical background. This means that Participants have to prove - in a formal, adversarial setting with a NDIA client advised by non-medically trained lawyers - that they have a disability and need supports. There are also concern about the NDIA not acting as a model litigant – as it is required to do– regarding AAT processes.
In 2019 – 2020 alone, the NDIA spent $7,181,901 on legal experts for AAT appeals with NDIA legal representation in over a third of AAT cases. In contrast, it is a recognised, sector - wide issue that cases are going to hearing with Participants having no access to lawyers or Legal Aid. Participants can’t afford legal assistance and Legal Aid doesn’t have the capacity to represent Participants in the AAT.
Lack of Equal Treatment for Participants from CALD, First Nations, Low-Socio Economic Backgrounds / Living in Rural and Remote Australia
It is a shared opinion across the disability sector that Participants from higher socio-economic backgrounds get better services/ outcomes. They have better reports and better doctors. They also have money to engage lawyers and access advocates.
Currently, the NDIS is mostly promoted through urban service providers and community programs – meaning that people suffering from socio-economic disadvantage are missing out.69 Participants from lower socio economic and CALD backgrounds have language and culture as a barrier to accessing the NDIS.70 It is the experience of Advocates that people will agree with a Planner for a cultural reason of needing to show compliance to authority, afraid that if they disagree they will lose their supports.
Lack Of First Nations And CALD-led Services
There is a lack of First Nations and CALD-led services and support workers. This provides a significant bottleneck preventing participants from receiving and using plans that meet their mental health, disability and cultural needs.
The NDIA needs to improve its communication strategy for socioeconomically disadvantaged groups of people with disabilities and make sure resources are available to provide advocacy support for this cohort.
It is the experience of Advocates - and also recognised as a national issue - that NDIA staff have difficulties contacting Participants who are in prison and so are not as willing to work with this group of people. NDIA staff also see it as responsibility of correctional services sector to provide disability supports, and not the NDIA.
PWdWA Case Study: Lack Of Equal Treatment
In 2020 – 2021 a Participant was referred to the Complex Support Needs Team due to the fact he was in remand at Hakea Prison, and no one could call or visit him easily. The NDIA Planner contacted Department of Communities Justice Coordinators, who had Official Visitor Status and could call and visit the person freely and in a timely manner. Every time the NDIA needed to get in contact with the person, they rang the Justice Coordinator and gave that person instructions.
At Hakea Prison, each inmate gets 10-minute phone calls which are listened to and terminated by the prison officers. However, only the inmate is able to make the call - they cannot receive incoming calls. This makes it very difficult for NDIA staff to contact and work with a person under these conditions.
When the person’s plan went to an internal review, the internal review officer stated in their decision that the NDIA would not fund any supports because they see it as the duty of the correctional services sector to fund and provide these supports.
Once a person is within 6-months of release from prison, the NDIA are able to work with the person and create a release plan, but it is the experience of Advocates that this does not often happen.
Advocates report that Participants from a particular rural area may have to deal with only one particular Local Area Coordinator, who may have unconscious / conscious bias towards certain cohorts of Participants.
Lack of Suitable Access to the NDIS for People Living in Rural and Remote Areas
The lack of suitable access to the NDS for people living in rural and remote areas is recognised as an issue across the country. For example, Participants lack access to professionals who have the time to write in-depth reports. People in these Participants can then end up with an under-funded plan due to lack of appropriate supports.
Lack of Planner Understanding of Disability and Scope of NDIA Assistance
It is the experience of Advocates that Participants can go to a planning meeting with all the clinical justifications they require regarding the level of support needed. However, when they get a plan, they are allocated significantly less than required because the Planner has not understood their disability(s) or the scope of assistance that may be provided.
Issues with the lack of NDIA staff understanding of disability, and in some situations empathy for disability, has been documented across the sector. For example, the Joint Standing Committee on the National Disability Insurance Scheme was informed that some NDIA personnel, including those in managerial positions, had disclosed “personal views which are abhorrent and contradict NDIS principles.”
Planners don’t understand how to provide support and provide an appropriate plan for multiple disabilities - for example if a person has autism and a neurological disability.
I was actually in tears with tears pouring down my face and I still had the planner firing questions at me. Common sense says you don't do that.
- NDIS Participant, 2021
Advocates report that Planners don’t understand how to develop a ‘holistic plan’, for example one that incorporates disability(s) with required operations and psychological treatment. Often, it looks like information has been copy and pasted from someone else’s plan onto the person’s plan and there are often noticeable, careless errors.
Lack of Consideration of Evidence Provided by Participants
Procedural fairness provides Participants with a right to be heard, the right to be treated without bias and a decision being made based on relevant evidence by the NDIA. Despite this, it is the experience
Lack of Consideration of Evidence Provided by Participants
It can be expensive for Participants to produce multiple expert reports when these are called for by Planners. It is the experience of Advocates and sector stakeholders that Planners don’t read through information / or take into account expert reports that are provided to them by Participants,
disregarding the time and expense taken to put together the documents.
PWdWA Case Study: Lack of Consideration of Evidence Provided by Participants
An Advocate and Legal Aid WA supported an individual at the AAT to gain access to the NDIS after being denied multiple times. The NDIA conceded that the person gained access due to their psychosocial condition. The Advocate then supported the individual at their first planning meeting.
Once the person had received a copy of her plan, not only did the plan not include some of the essential supports she requested, but there were also paragraphs that referred to her as another person and sentences that referred to her as he/him.
The Advocate explained to the person that she could have this information corrected by contacting the NDIA or making a complaint. However, the person declined out of fear her complaint might impact her plan.
Lack of transparency
Many in the disability sector have raised the lack of transparency in funding decisions as being a major issue with NDIA culture and capability. For example, it is the experience of Advocates and other sector stakeholders that Planners don’t send the plan to Participants for review or comment before the plan is sent away for approval.
There is detailed guidance available for Planners about the kinds of information that should be in reasons for decisions that are of particular importance. Despite this, reasons provided by the NDIA for access decisions are brief and without detail - lacking information about why or how the decision
PWdWA Case Study: Lack of transparency
A Participant wanted the NDIA engaged occupational therapist (OT) to send the draft plan to her for review before it was sent to the NDIA.
The Participant is trying to learn how to ride a bike again and she has been told by the OT she is not allowed to do this activity. The OT hasn’t considered assisted technology. The Participant has been trying to self – advocate and has asked for the plan in this process.
The OT said to the Participant she wouldn’t get plan to review, and that the Participant should be content with the decisions being made and that the OT understands the nature of the disability better than the Participant.
PWdWA Case Study: Lack of transparency
An Advocate supported a woman with a spinal cord injury through her second NDIS Plan review. The first plan included 100 hours of support coordination, with the Support Coordinator writing a report evidencing the need for further support coordination and an increase in hours to 150 hours per year.
The planning meeting was conducted by an LAC Planner. The Advocate and Support Coordinator attended the meeting to support the woman. The LAC stated that there was an internal document that dictated eligibility for support coordination for people with a spinal cord injury. The woman did not meet the eligibility criteria, meaning the LAC Planner could not include it in the request.
When asked about eligibility, the LAC Planner responded that he was not allowed to disclose the information. After further questioning, the LAC Planner stated that for a person with a spinal cord injury to be eligible for support coordination it must either be their first NDIS Plan, or the injury had to be acquired less than 2 years ago. The LAC Planner also stated that they were not allowed to share the internal eligibility document and it was not publicly available.
Lack of accountability and issues with complaints
There is concern among many in the disability sector regarding lack of accountability and the handling of complaints by the NDIA. It is the experience of Advocates and sector stakeholders that NDIA staff are not held accountable for mistakes or negligence and the NDIA is not abiding by the legislated complaint management process.
The NDIA is not transparent about complaint resolution processes when mistakes and misconduct are reported.Advocates also report that Participants are blamed for errors in planning and have to provide evidence that their own conduct has not been in error or fraudulent.
Participants don’t know how to access the NDIS Quality and Safeguards Commission or make a complaint. There is not enough accessible information for Participants about their right to make a compliant or how to make one.
Advocates also believe that the NDIA should be doing much more to monitor and follow up complaints of Participants against disability support providers (Providers).
PWdWA Case Studies: Lack of accountability and issues with complaints
It is the experience of Advocates that some Providers may be participating in the fraudulent misuse funding. When Participants tell Providers that they are going to make a complaint, some Providers will bully Participants and take their funds. In some instances, it appears the Provider has offered a bribe to the Participant so stop a formal complaint process.
For example, it has been reported that one Participant had her funding taken away. When the Participant complained, her funding was replaced by the Provider and an additional $16,000 was put into the Participant’s personal account.
It has also been reported that another Participant made a complaint to her Provider and wanted to escalate it to the NDIA. The Provider stopped the complaint process and replaced funds that had been removed from the woman’s plan account by the Provider.
D. Recommendations
We make the following recommendations to the Committee, noting that many of these are in agreeance with sector stakeholders across the country, including but not limited to the: Public Interest Advocacy Centre; Disabled People’s Organisations Australia; National Legal Aid; Summer Foundation;
Restructure the NDIA
People with Disability Australia; and Parliament of Australia Joint Standing Committee on the National Disability Insurance Scheme.
The Current Framework Needs Restructuring
The current NDIA decision making, legislative and policy framework is so complex that many Participants cannot engage with it without the assistance of trained advocates.89 The NDIA needs to be restructured so that Participants engage with it appropriately and are also able to navigate the NDIS effectively.90
We agree with the Summer Foundation that this could include ’faster approval of quotes, more efficient signing of service agreements, streamlined processes with fewer steps and people involved.’91
Due to its enormity and the inefficiency of its current bureaucratic structures, the NDIA should also be broken into smaller more approachable entities/service hubs.
Top - Down Change of Culture and Ethos for the NDIA
Participants lack trust in the way the NDIS is being run by the NDIA.92 A major, top-down change of culture and ethos in the NDIA is required to address current, embedded adversarial culture of mistrust and disrespect of Planners and NDIA case managers towards Participants and vice versa. 93
The NDIA needs to decide if it is a human services agency or an insurance agency and act accordingly. If the NDIA is a human services agency, as it purports to be, then it must have a sustainable tax base and a human centred ethos and culture that it consistently demonstrates with Participants.94
NDIA administrators need to ensure a strong focus on progressing inclusive and culturally sensitive policies, practices and processes to prevent and monitor adverse events, risks and exploitation within individualised funding systems.95
Top - Down Change of Training and Work Practices for NDIA Staff
There is an acute need for specialised, trained Planners working across the NDIA – for example for people with psychosocial and complex disabilities.
There needs to be increased training for NDIA staff so they may better address the concerns of service users. This should include induction support and supervision training. We agree with the recommendation of National Legal Aid that The Participant Service Guarantee ‘should ensure that planners receive adequate training and guidance to ensure that people receive adequate plans individually tailored to support their needs and achieve their goals’.
It is recognised across the sector, and by the Parliament of Australia Joint Standing Committee on the National Disability Insurance Scheme, that NDIA staff are subject to substantial performance pressures, which is leading to error in the planning process.
Planners need to be given enough time to properly review Participant documents and evidence, and meet with Participants, in order that an appropriate plan may be prepared for each individual Participant.
Changes to Model of Planner / Participant Interaction and Relationship
There is currently an imbalanced power relationship between Planners and Participants, where Planners orders documents and evidence to be produced by a Participant. It is the experience of Advocates that Participants often do not understand requests, as they are provided in NDIA terminology. Often Participants don’t have enough time to meet requests due to the long waiting times for medical reports.
The interaction and relationship between Planners and Participants need to be collaborative, not combative. There needs to be enough time given to meet requests (e.g., for specialist appointments) and helpful follow up on plans from Planners to make sure that important dates are met by Participants.
Planner communication needs to be done with a ‘human approach and inquiring mindset’, making sure that all communications between the NDIA and NDIA stakeholders are conducted with dignity and respect.102 Planners need to be trained in and use supported decision - making practice, so people with disability can make informed decisions about planning their supports.103
The federal government needs to ensure that adequate investment is made in human resourcing to ensure a highly - skilled and committed NDIA workforce that can respectfully work with system-users to develop and effectively use appropriate budgets.104
Changes to Hiring and Capacity Building Practices
The NDIA needs to hire more people with disability because ‘a scheme run for people with disability should be a scheme run by people with disability’.105
It is agreed among sector stakeholders that there is a general lack of empathy with NDIA staff for mental illness and struggles of people with mental illness to compile evidence or advocate for their needs in a planning process.106 NDIA staff need empathy training because many of the Participants
Recommendations for Improving Planning and Support Processes
Come to a planning session having already been adversely affected / traumatized by a life situation or treatment by a large government organisation like Centrelink.
It is the experience of Advocates that Participants don’t want to have to explain a condition, over and over, as this can be retraumatizing.107 Planning is a much better experience for Participants if Planners have prepared for the planning meeting and understand the kind of disability they will be assisting with.
Planners need to be trained:
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so they have a more thorough and genuine understanding of different kinds of disabilities and how these disabilities interact;108
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to do a tailored, ‘case by case’ analysis of the evidence and case provided by Participant for supports.
Put in Place a Specialist Evidence Team
As is being piloted in relation to access request appeals, the NDIA needs to create a team purposely designed to read evidence and work with the people providing evidence if NDIA requires further information. This staff would have disability – specific expertise. 109
Put in Place Specialist CALD and First Nations NDIA Branches
Required are specialist CALD and First Nations branches of the NDIA to engage appropriately with these groups and improve their access to the NDIS.110 CALD and First Nations communities must be provided with basic requirements of accessibility, including translation and interpreting services.111
Provide Guidance about the Evidence Needed for Planning and Appeal Plans
Participants don’t understand the importance of evidence to support requests in plans. As highlighted by the Summer Foundation: ‘NDIS participants want the NDIA to revise its requirements for providing
Improving Evidence Guidance in NDIA Funding Decisions
The NDIA needs to develop plain English policy/guidance about the kinds of evidence they need provided and NDIS Participants need to understand the importance of providing evidence to support their plan requests.
This kind of guidance will allow people to go into the plan reviews and appeals with much less anxiety because they will know what kinds of evidence they need to provide and how/when to provide it.
Regular Audits of Plans Prepared by Planners
We agree with the position of National Legal Aid, calling for the NDIA to “act in a transparent, informative and collaborative spirit so that participants understand why decisions are made.”[1]
Plans prepared by Planners should be audited regularly to ensure a high standard of Participant service, evidence review, and plan preparation – as well as equal and unbiased treatment of Participants.[2]
Planners should also be required to provide their proposed NDIS plan, with reasons for decision-making to the Participant for review and comment. There should then be consultation between the Planner and the Participant before the NDIS plan is finalised.[3]
We also agree with the position of National Legal Aid that the “NDIA should be subject to the Commonwealth scheme for compensation for detriment caused by defective administration and the act of Grace provisions in section 65 of the Public Governance, Performance and Accountability Act 2013 (Cth).”[4]
More Regular Audits of Providers
The NDIA needs to do a more regular auditing process for Providers, especially if there has been a complaint made against a Provider for a serious misdemeanour for mismanagement of plan funds. Participants need a way to easily provide feedback to NDIA about what is happening with Provider use of NDIS funding and if there are any discrepancies in its use.
The NDIA needs to do significantly more information sharing and capacity building for the sector about legislated complaints process in relation to NDIA staff and Providers.
Improved Transparency
To ensure a duty of procedural fairness is met and there is transparency in decision making by NDIA staff, Planners need to send plans to Participants for review and comment before the relevant plan is sent away for approval. Currently, when Advocates request a copy of the plan Planners say they will provide draft plans but they don’t.
All NDIA decisions must be well documented, and reasons for decisions be clearly identified and linked to documentation and evidence provided by the Participant. When there is an internal review there need to be substantial reasons provided for decisions. NDIA Planners need to provide PIAs to Participants, so they have access to reasons by NDIA for decisions made about plans.
The NDIA should prepare a glossary of terms so Participants can be on equal footing with NDIA staff and lawyers in disputes and planning. This glossary of terms of should have explanations, with examples and if possible, and it should be in Easy Read form.
Grace Period for Transition from Centrelink / disability support pension to NDIS
There must be a grace period between people transitioning from Centrelink / a disability support pension to NDIS. It not reasonable for a person to withdraw their mobility allowance and some one-off payments, e.g. continence aids, prosthetics, mobility etc., without knowing if they will be eligible or successful for NDIS funding. Participants should be given a reasonable amount of time to transition from previous supports to NDIS payments so there is no gap in funding.
Changed Model of Interaction in the Administrative Appeals Tribunal
There needs to change from the currently imbalanced and unjust adversarial system, to an equal and equitable forum for Participants.
Incorporating Precedents Into Handbook
Now that many precedents have been set regarding plan requests, these could be incorporated into a handbook for NDIA and Participants about what supports have been allowed / not allowed in plans and why.
It is also recommended that in cases where a Participant does not have legal representation due to issues such as cost and capacity of Legal Aid staff, then the NDIA in good faith either:
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ensures legal support for representation for that Participant, for example through greater funding and support of Legal Aid to assist; or
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does not engage a lawyer or a barrister but is instead also represented by a lay person staff member who is not legally trained.