Individual Submission

to the

Joint Standing Committee

on the

National Disability Insurance Scheme

Inquiry regarding the

Prepared by

Mark Toomey

16 December 2022.

Table of Contents

Introduction ………………………………………………….. 2

My relationship with the NDIA ……………………………….. 2

My Background ………………………………………………. 2

My View of the NDIA Culture and Capacity ………………….. 3

Class Action against the NDIA ………………………………… 3

Illustrations of the NDIA Culture and Capability …………….. 4

Refusal of access ………………………………………………. 4

Appalling Plans for ……………………………………….. 5

Appalling Plans for Others ……………………………………. 7

Dogged Reliance on Algorithms ……………………………….. 8

Secret Systems and Opaque Processes ………………………… 8

Ignoring Information ………………………………………….. 10

Secret and Unfathomable Decisions …………………………. 11

Non-Participant Specific Observations ……………………….. 12

Co-Design …………………………………………………… 12

Barriers to Communication …………………………………… 12

Conclusion ………………………………………………………. 17

                                    1

Introduction

I open this submission by expressing my respect for the First People of Australia, and particularly the people of the Bunerong Nation, on which I live and work. I pay my respects to their Elders, past, present and future. I express my specific regret to the people of the Mandandanji Nation, whose land was forcibly occupied, in part by my forebears.

I thank the Joint Senate Committee on the National Disability Insurance Scheme for the opportunity to deliver this submission. I urge the members of the committee to act strongly on the whole set of submissions to improve operation of the scheme and ensure the safety of its participants and their carers.

I apologise that this submission is a little lacking in structural cohesion. Due to the impact of the NDIA on my own mental health, I now lack my past capacity for assembling highly coherent reports, and the time to do all the work to stitch together all the pieces of my argument. Regardless, I trust that the Committee will take the time to hear my pleas.

My relationship with the NDIA

My name is Mark Toomey. My son is an NDIS participant now aged 43 years. On May 4th 2015, experienced a massive brain haemorrhage which caused substantial damage to the right side of his brain. He was deemed ready for discharge from Caulfield Hospital ABI unit in October 2016 but did not actually leave the hospital until October 2017, after finally being granted access to the NDIS in June of that year. This delay was the first of many experiences in which the NDIA failed my son.

My sister experienced serious stroke early in 2016. She also has an acquired brain injury, though less significant than that of my son. she too is an NDIS participant. she is fortunate that we have several other siblings who were able to support her battle to access the NDIS, because I was far too heavily loaded with the challenges of supporting my son.

My daughter’s second child exhibited early developmental delay, and was enrolled in the ECEI program. The therapy he has received has delivered marvellous results, to the extent that he is more than ready to start school and participate fully in the standard school program. His autism behaviours have substantially receded, and he has become a powerful example of the good that NDIS can do.

My Background

I am now 67 years old. my professional career In the IT industry spanned from 1977 to 2020 and climaxed with me being recognised as an international thought leader in the field of governance of information technology. I am no longer able to work in my field of expertise. the ndis has contributed significantly to this incapacity.

My mental health has been damaged by two significant and extremely different experiences in life. I am a survivor of sexual assault as an 11-year-old boy in 1967. My assailant was convicted in March 2019, and I subsequently took civil action in pursuit of compensation. In 2021 and 2022, I underwent 2 psychiatric assessments as part of this civil action. one psychiatrist diagnosed that I live with PTSD. the other psychiatrist diagnosed that the more significant impact on my PTSD is my more recent experience with the NDIS.

My View of the NDIA Culture and Capacity

People who lack intimate experience of dealing with the NDIS might think that its culture and capacity can be described easily using simple words. Reality is far from that. But I can start with a few simple words to set the scene: Complex; Frustrating; Adversarial; Toxic; Unkind; Unhelpful; Ugly; Confusing; Archaic; Punitive; Secretive; Opaque; Obsessive; Arrogant; Disrespectful; Dictatorial and on it goes.

In NDIS 2.0: A disability led plan for the NDIS, Dylan Alcott, is reported at being quick to praise the NDIS as an “incredible scheme that has done some great work in its first ten years of existence” but acknowledges the program has “not worked for everyone.” He is right, but perhaps there needs to be more stress on the fact that he is focused on the NEXT NDIS, and may not be giving enough attention to the way the current implementation has “not worked for everyone.” We should also remember that Mr Alcott was talking about the NDIS – the Scheme – and not the NDIA – the Agency. What holds for one does not necessarily align to the other.

Despite my strong negative perspective, I acknowledge that the NDIS is in many ways far superior to the scheme which it replaced. I suggest that this says less about how good the NDIS is and more about how disgracefully bad the prior scheme was. Notwithstanding, it is significant to note that the NDIS contains significant gaps which were previously well covered in the prior system. Gaps such as the lack of case management and the lack of crisis support say much to the lack of comprehension by those who implemented the scheme regarding the true needs of people with disabilities and their carers. I acknowledge that my negative perspective is almost entirely a result of my dealings with the Agency,

Class Action against the NDIA

Dylan Alcott also said: “Some people have had great experiences with the Scheme. Others have not”.

Those “others” have in many cases experienced substantial psychological, physical and financial harm through the experiences which were “not great”. Those “others” are not just a small few who through their own behaviour have triggered unsatisfactory experiences. In reality those “others” likely number in the thousands, and their “not great” experiences arise from extraordinary flaws in the culture and capability of the National Disability Insurance Agency. And that is the key point of this submission – that the NDIA too often creates negative experiences for participants, prospective participants and carers, and becomes entrenchedly oppositional to meeting their needs.

In August of 2022, I commenced on a mission to launch a class action which seeks to hold the NDIA accountable for the harm that it has caused, to pursue remediation, and obtain compensation for those harms. To date the NDIS Class Action Group on Facebook has enrolled more than 350 members. These members are participants and carers for participants. Frequently they are parents, siblings and children of NDIS participants, including people who seek unsuccessfully to enrol in the scheme.

Through the work of developing this class action, I have engaged with many participants and carers, whose experience of dealing with the NDIA has been as bad, and frequently worse than my own. I will cite several of these experiences in my ongoing discussion of NDIA culture and capability. Naturally I will not be disclosing any identifying details of people who have told me their stories.

Illustrations of the NDIA Culture and Capability

Refusal of access. My son, was deemed ready for discharge from hospital at an extremely difficult point in the transition from the prior system to the NDIS. There was no question that had profound disabilities that did not exist prior to his brain haemorrhage. The damage to his brain resulted in a significant array of physical and cognitive deficits. The hospital reports articulated these deficits in grim detail and painted a desolate future for him. The then-outgoing Victorian disability system was closed to new entrants. The NDIS was rolling out progressively on a region-by-region basis. Hospital executives and social workers were demonstrably lacking in information about the scheme and aggressively pursued strategies focused on driving into the closed state system rather than into the NDIS. In parallel, the NDIA refused multiple applications for access to the scheme, insisting that was not in a roll out area. This was despite the agreement between Victoria and the NDIA containing a clause (which I frequently cited) that very specifically addressed the need of people with newly acquired disabilities and stating unequivocally that they were to immediately enter the new scheme. Because I was deemed uncooperative, the systems that I was battling sought to remove me from control of my son’s future by seeking a guardianship order in VCAT. I fought this battle for six long months. I thought that once access to the NDIS had been granted my fights were over. Little did I imagine what the next six years would be like.

The NDIA demonstrated in this context a lack of capability to work within its own legislation, rules, and agreements. How can one describe the culture of a new organisation which fails persistently at the first hurdle other than to describe it as obstinately bureaucratic, lacking in capacity to address complexity and utterly devoid of empathy.

My sister was also refused access to the scheme. In her case the rollout was not the issue. Rather, The NDIA simply refused to accept that her disabilities meet the threshold for access to the scheme. She presented numerous reports confirming her physical disabilities, which were ignored. It took a concerted effort from our brother, a senior member of the accounting profession, to overcome the barriers. My sister now enjoys her NDIS supplied wheelchairs, car modifications, home modifications, assistive technology and other supports while she completes her PhD studies, continuing to contribute to the field of athletic performance and sports management in which she has excelled for over 40 years. Had NDIA succeeded in preventing her entry to the scheme, her already outstanding new contributions to her field of expertise would not exist.

How does one describe the culture of an organisation that tries very hard top deny an individual their rights, as defined in legislation and rules?

My son and my sister are far from alone in having been initially refused access to the NDIS. Numerous members of our NDIS Class Action group report similar experiences of being refused access, despite substantial quantities of clinical evidence and advocacy. I am aware of a man close to my own age but still under 65, who has survived a stroke and, while incapable of resuming work, has been told that he must wait 2 years to “see how much he can recover”! I can imagine that after the 2 year wait, during which he will receive little support or therapy, he will then be deemed too old as he will be over 65.

The AAT has processed a significant number of appeals in which a refusal of access has been replaced by a grant of access. How can it be that members of a semi-judicial body, working strictly in

accordance with legislation, can make different, more positive findings than bureaucrats working to the same legislation. What drives these differences? Could it be:

- an entrenched neo-liberal culture of denying welfare to those perceived as undeserving?
- an arrogance that empowers (and perhaps requires) untrained and unskilled bureaucrats to
    override the assessments of independent experts who have years of training and clinical
     practice, operating within a strict governance framework established by a combination of
   government and professional bodies?
- a computer system producing an erroneous result based on data extracted by bureaucrats
   from the expert reports and flawed algorithms, where the bureaucrats are intimidated by
     internal rules that disallow argument with the omnipotence of the computer?
- all of the above?

Appalling Plans for It should be entirely unnecessary for me to point out to the Committee that there have been numerous media reports of the NDIA delivering appalling plans to participants.

My son, has been the recipient of a series of appalling plans. The consequence of these plans has been that has:

- experienced physical injury, including three serious bone fractures in 5 years as a result of
   having less support than requested by expert clinicians;
- experienced numerous non-injury accidents such as being tipped from his wheelchair, again
    as a result of having less support than requested by expert clinicians;
- been unable to pursue capacity improvement activities, which are often touted as a "holy
     grail" of the NDIS, due to – you guessed it - having less support than requested by expert
     clinicians;
- been unable to reclaim his relationship with his now 15 year-old son;
- been unable to engage in activities that are important to him, including participating in
   music festivals, foraging for bush foods. Fishing, gardening and owning a dog.

In addition, the stress of managing his world while he has inadequate plans and the stress of battling for better outcomes has had a serious impact on my mental health, capacity to work, and financial well-being.

To date, has had 10 DIS Plans:

• 19 June 2017 First plan in hospital

• 9 October 2017 Move to group home

• 3 May 2018 Power wheelchair

• 8 May 2019 Plan expired with no planning meeting scheduled. Emergency rollover extension provided leaving 5 days unfunded.

• 8 August 2019 Replacement for 8 May plan after complaints process. See further discussion below.

• 30 October 2019 Replacement plan after complaints, prepared by a different planner in a different office (Berwick). This plan was also dreadfully inadequate. S100 review initiated. See notes below.

• 12 Feb 2020 Replacement plan following S100 review. first appropriate plan. All items except transport approved as requested. Plan end date as per original at 20 October 2020.

                                    5
  

• 6 May 2020 Replacement plan with no review, adding SDA, capital funding for recumbent tricycle and replacement manual wheelchair. Plan duration stated as 6 months, but next review date stated as 18 months away.

• 25 March 2021 New plan following planning meeting on 2 November 2020 – delivered over 4 months late. This plan was grossly inadequate, along the same lines as October 2019. S100 review request submitted resulting in refusal of all requested changes.

• 16 Feb 2022 Replacement rollover plan after early review as prior plan had run out of funds.

  2017 and 2018 plans never ran to completion, due to the NDIA practice at the time of
  

automatically renewing the plan whenever a capital item was approved, and when there was a change of circumstances. Because these plans were renewed well before scheduled expiry, and because at the time was living in a group home, it was not initially apparent that there would be significant challenges arising when plans were under-funded.

The 8 May plan was an emergency extension, caused by the NDIA failing to schedule a review when the prior plan expired. We had managed that plan carefully to last the full 12 months with insufficient services, but had no funds available for further supports. The emergency rollover was provided, but it left a 5 day gap in funding. I was forced to “bend the rules” to enable payment for supports used in the unfunded period.

  29 May 2019 planning session was the first time we experienced significant difficulty with

plans. I prepared a comprehensive submission based on the fact that had made significant progress in capacity building and, while still substantially disabled, was seeking more support to enable him to achieve his expanded goals. The planning meeting was booked directly by the assigned planner on 9 May. On 23 May, I submitted a comprehensive request for supports, including extensive documentation from allied health team covering neuropsychology, euro-physiotherapy, occupational health and speech pathology, and the required support cordinator report. On 28 May, the assigned planner was replaced by a senior planner. We were given an unlikely story about the planner who had been booked on 9 May being suddenly unavailable due to “unavoidable prior commitments”. The senior planner was completely unprepared for the meeting, having not read any of the submitted materials. Bizarrely, the planner told me that she had a 17 year old intellectually disabled son, and therefore had a very good understanding of needs. There is a world of difference between intellectual disability and an acquired brain injury, and it was quite inappropriate for the planner, who had previously worked in the Victorian state system, to make such a false connection. Further, she indicated a significant hostility toward the extent of supports requested, and told me that I would “need to become very familiar with the S100 (request for review of a reviewable decision) form. The plan delivered was massively deficient across the board of supports, and caused me to lodge an immediate complaint AND a demand for a replacement plan. There was a significant delay in producing the plan, which was resolved promptly after I had submitted a complaint.

The 8 August plan was the result of the 29 May planning meeting. It was dreadful, and the lack of supports would have caused substantial deterioration in capacity. We lodged an immediate complaint and demanded a replan, in a different office, with a different planner.

The 30 October 2019 plan was the result of the complaint. The planner assigned from the Berwick office resigned mid-stream and a third planner picked up the task. There were multiple meetings,

Appalling Plans for Others

including one where the planner came to the group home where was living, to observe his capacity and environment. We did not feel that we were heard in these meetings, and the plan delivered confirmed our concerns – it was mostly similar to the plan that had been delivered on 8 August. We immediately lodged a S100 Review request.

The 12 February 2020 plan was the result of a S100 review. The delegate who reviewed the plan spoke with me by phone and had no concern about approving every request in full, other than extended transport funding, where only standard funding was approved.

The 6 May 2020 plan enabled to move to safer SDA accommodation, away from the group home which had become unacceptable during the early stages of Covid. It also added other capital items and 24 x 7 1 on 1 support as prescribed by the allied health team. It reduced some supports, but we did not appeal due to the challenges of Covid and the fact that had sustained a serious hip fracture.

The 25 March 2021 plan was delivered more than 4 months after the meeting on 2 November 2020. It did not provide adequate support across the full spectrum of requests. We were told that as had shown some gains in capacity, he clearly did not need as much therapy support, and we were told that low paid support workers could handle the complex task of managing his day to day affairs, such as making and keeping appointments, scheduling, money management and so on. These tasks are usually performed by a specialised “Key Worker”. The plan was, in essence, just like the plan that had been replaced in the S100 review, adding weight to the theory that the system was producing “robo-plans” that did not properly accommodate his needs. We submitted yet another S100 request, but this time, the request was refused in its entirety, and we were left to try to manage next 12 months with funding for 10. Rather than endure the stress of AAT, we were advised by an Advocate to proceed as normal and ask for an early review when the plan did run out.

The 16 Feb 2022 plan is the result of following the advocate’s advice. We allowed the plan to run out of money and requested an early review. At the early review, we agreed to delay the actual review and proceed with another rollover of the plan, again aiming to survive for the next 9 to 10 months.

We are now scheduled for a further review on 20 December, having again run out of funds.

Appalling Plans for Others

From the time when we were forced to complain and submit review requests about plans, I have been aware that many other NDIS participants have also had problems with their plans, and have been forced to undergo extremely stressful review and appeal processes.

Early on, I became aware of the case of Jake Castledine, where the AAT Member replaced the NDIS plan with a new one that hugely increased the level of support provided. The Member rejected the NDIA position because she preferred the evidence of experienced, skilled and trained allied health therapists who had spent time with the participant to the evidence of a planner who had no relevant training or experience, and had never met the participant.

Through long standing personal connections, I have been aware of a young man and his now ageing mother. The young man is physically deformed with zero mobility, intellectually disabled, has autism and significant behaviour issues. He has been traumatised in a state funded group home and now needs highly specialised support. His mother has been in constant dispute with the NDIA over his support plans, and has been to the AAT on multiple occasions. On every occasion, the NDIA has relented at the last minute, and approved the required supports.

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Through my participation on social media, I have become aware of many (numbering well into the hundreds) of people who have experienced the NDIA delivering inadequate plans. Through the NDIS Class Action group which I established on Facebook, I have direct connection to more than 350 people who believe they, or people they care about, have been harmed by the NDIA refusing to provide access and adequate plans. Many of them have been forced to the AAT, while a substantial portion have also given up on their hope of accessing adequate support.

Dogged Reliance on Algorithms

The AAT itself provides evidence of inadequate plans. A report prepared by QAI shows that 63% of appeals are resolved in favour of the participant and 35% of applications are withdrawn or dismissed with no result. This means that only 2% of appeals that do not go to a hearing actually result in a negative outcome for the appellant. The 35% withdraw/dismissal rate suggests that the process is too onerous. 76% of appeals that go to a hearing are resolved in favour of the participant, suggesting that a high proportion of the withdrawn cases might also have bene successful.

We must remember that the AAT process is daunting. I started an AAT appeal, and withdrew early, on advice of an Advocate. It was extremely daunting, and my mental health was already very fragile. I quite likely would not have survived the experience.

If between 76% and 98% of AAT appeals initiated turn out in favour of the participant, surely we can infer that the NDIA is, in a majority of cases, producing unsatisfactory plans.

Why does the NDIA produce unsatisfactory plans and then fail in its arguments to retain plans that the participants and their carers regard as inadequate. If the plans are developed through the use of algorithms, the NDIA seems to be placing too much trust in those algorithms. Is the NDIA doggedly determined to enforce the “computer says” mentality? Have these algorithms been tested? Have they been independently reviewed by suitably qualified experts? Are the algorithms capable of nuanced outputs based on the information provided in relation to each individual? Is ALL the relevant data about each individual actually processed by the algorithms? Are the personnel who gather and enter the data trained and adequately skilled to encode and enter ALL of the relevant data?

If it is not slavishly following the algorithms, how else does the NDIA produce plans. My requests for information about plans have revealed no information about how the plan is prepared. Others with whom I have ongoing contact report similarly, that their requests for information, including FOI requests, provide no information about the algorithms. In a private conversation with a past NDIA employee, who worked as a planner, I learned that planners are legally proscribed from sharing any information about how the algorithms work and are used.

Secret Systems and Opaque Processes

Secret systems seem to be an endemic aspect of the NDIA approach to its responsibilities. It has become abundantly clear that the NDIA Algorithms are treated as state secrets, at a similar level to those held in Defence and Immigration. Why? The law set out in the NDIS ACT and the NDIS Rules already makes abundantly clear the rules for preparing plans, and most people of normal intelligence can see that a majority of support requests can be fairly processed to produce satisfactory outcomes by reference to the Act and the NDIS Rules. Do the secret systems f the NDIA breach the law, by not following the provisions defined in the Act and Rules?

A person seeking to understand how the NDIA prepares plans might expect to find comprehensive documentation on the agency web site.

And yes, there are documents – many of them. The simple search result below illustrates part of the problem:

The NDIS website makes its own contribution to the unfathomability and opaqueness of the NDIA approach, by providing man different answers to essentially the same questions.

But it’s worse than that

When a participant initiates an AAT Appeal, the resultant T-docs (an obscure NDIA/AAT term) contain another document detailing how plans are prepared, which is not prominent and possibly not found in any online search results. Yet, even this document does not explain how data is coded for processing by the NDIA algorithms, or how the algorithms operate.

It seems clear that the AAT does not examine the algorithms, or the data submitted to them. Rather, the AAT determines the appropriate outcome from first principles, according to the legislation. The veracity of the algorithms is questioned only obliquely, and because the detail remains secret, their correctness remains at best a mystery, and at worst an indictment of those who insist on using them.

It’s all a bit like Robodebt, really. Not only does nobody know how it works – nobody is allowed to know how it works – and those who do know are bound to secrecy until somebody becomes brave enough to blow the whistle. Or until a court orders that the detail be exposed to it for assessment.

Ignoring Information

From the outset, I have made immense effort to prepare for my son’s planning sessions. I have gathered extensive and detailed documentation about his brain injury, the deficits that the injury causes, and the supports he needs. I have arranged expert assistance for long-term scenario based planning of his new life vision and goals. I have harangued service providers and therapists, and arranged no end of assessments and assessment updates. For every planning meeting, I have provided this extensive information reasonably in advance of the meeting date.

But most of what I have provided, and particularly the recommendations from expert therapists who know well, have clearly been ignored, or rejected out of hand.

I now know that planners are extremely time poor, and are not allocated sufficient time to develop any more than the most basic plan. They have to meet quotas. They do not read a majority of information provided in preparation for a planning meeting, despite advice on the NDIS website encouraging participants to provide information. They often take shortcuts, including re-use of plan information from another person – as evidenced by incorrect material, including names of unrelated persons, appearing in plan outputs.

My experience with plan is only a small part of the basis for these comments about the NDIA ignoring information. Social media reports frequently refer to information being ignored. Many participants in the NDIS Class Action Group can demonstrate instances where information has been ignored.

What are the consequences of the NDIA ignoring information? At one end of the spectrum, ignoring information creates frustration, anxiety, and extra work as participants and their carers have to complain, request further reviews, obtain updated and additional reports, and, ultimately, appeal. But at the other end of the spectrum, ignoring information puts participants and their supports at risk of harm, and in some serious cases, results in actual harm, including death.

I have recently provided information to the NDIA, at the most senior executive level, regarding a participant I know who is at risk of death due to inadequate supports. There was no response from the NDIA executives to this report. I made the same report to the Minister’s office, and the report was relayed to the NDIS Complaints team. The complaints team responded by saying that I have no authority to act on behalf of the person at risk, and closed the complaint. The person at risk still has extremely deficient support and is at ever-increasing risk of serious illness, or death. I keep regular contact with that person to remain aware of any increase in urgency, but am extremely limited in

Secret and Unfathomable Decisions

As if secret systems and opaque processes are not enough, the NDIA also seems obsessed with secrecy regarding its decisions, many of which make no sense without adequate explanation. On the other hand, when some decisions are questioned, the explanations re not so much secret as ridiculous.

For example, when fell and fractured his hip (he has always been described as at high risk of falls and the support provided was inadequate at the time), he spent around 3 months in a fractures rehab facility. On release from the rehab facility, the NDIA refused him physiotherapy, insisting that such was now a health system responsibility. They ignored the reality of his ABI induced hemiplegia, spasticity and contractures which continued to require significant attention over an above the therapy relating to the hip fracture.

And when reported gains in capacity through hard work on his part, working closely with his neuro-physiotherapist, he was rewarded by such a steep reduction in therapy hours that he was virtually assured of reversion to a lower capacity state again.

When applied fro SDA, it was very clear that, for a variety of reasons, he needed to be in individual accommodation, with 24 by 7 support, meaning a minimum of a 2 bedroom unit. Instead, he was allocated funding for shared accommodation in a 3 bedroom shared unit – otherwise known as a small group home. For reasons that have not been disclosed, his choice and control was overridden by faceless, nameless people who had not taken into account all of the information provided.

The NDIS Class Action Group includes many members who haver had plans reduced without notice and without consultation, in contravention of the requirements in the Act which prescribe that plans must be prepared WITH the participant. It appears that these changes to plans are also made with no transparency regarding why the changes were made.

One member of the NDIS Class Action Group has twins who have the same condition and the same disability. There plans were prepared at the same time. Perhaps surprisingly, the twins’ plans were substantially different, across the board. There has been no explanation of how two sets of basically identical inputs can have produced dramatically different outcomes. The process is secret, and the result, unfathomable

Without transparency, planning and other decisions are manifestly kept secret, and because of the secrecy, they are unfathomable.

Non-Participant Specific Observations

Given that I am still writing this submission at 3:00 pm on the final day for submissions, I have chosen to end here my discussion of the culture and capacity of the NDIA as it relates to individuals.

But, it is not just in respect of how it deals with participants and their supports and carers that the NDIA is lacking in its culture and capability.

Co-Design

For more than two years, I have participated in an NDIA initiative called “Participant First”. This initiativie is pitched as a way for participants and their carers to engage at a deeper level in the evolution of the NDIS.

In essence, the Participant First initiative is pitched as an attempt at Co-Design. In this regard, it is an abject failure. Co-Design of business capability involves all relevant disciplines working together in a collaborative, iterative manner, designing and refining the way that particular business capabilities are implemented.

Please remember that I have over 40 years professional experience in building technology-enabled business capability, and have been regarded, since 2008, as a leading global expert in governance of IT. I know very well what co-design involves.

Through Participant First, the NDIA pays lip service to the fundamental concepts of consultation and co-design. The participants and carers who participate in the program do not interact with the other disciplines involved in the design and implementation of business capability. Rather, they are presented with isolated and encapsulated ideas (sometimes thought bubbles) and invited to comment on or test them. There is minimal feedback and no evidence of any change arising from the comments submitted. Often, the online meetings are dominated by people who have little understanding of business capability design and development, and who are primarily involved as a means of expressing frustration with the existing NDIA systems.

Barriers to Communication

Dealing with the NDIA is one of the most frustrating experiences of my life. The agency has constructed a substantial set of barriers to communication, which contribute to dissatisfaction and distrust among participants and carers. It seems that the NDIA has a culture of hiding from its customers.

NDIA Outbound calls come from private numbers. Many vulnerable people are terrified of private numbers, for a wide range of very good reasons. Recent introduction of a precursor text message advising of a call is at best a half-hearted attempt to patch over the problem rather than fixing it properly. I was intrigued to recently receive a call from an NDIS Planner via a personal mobile phone. The planner explained that it was much more effective than the hidden number call. Of course, the planner did not mention that the call recording was also defeated by the use of the personal mobile.

There are many technology options available to the NDIA to simplify the handling of outbound calls, so that they are recognisable and appropriate. Why does the agency persist with this barrier to communication?

NDIS Jargon

NDIS Jargon means little to participants. Many professions and many government agencies suffer from this problem. The language they use is full of special words and words which are used in ways inconsistent with their dictionary meaning. Communication specialists have analysed these issues over many years, and professional expertise is available to help organisations ensure that they communicate in clear, plain language.

But the NDIA persists in extensive use of its own jargon in its many publications as well as in its communication with participants. One straight forward illustration of the problem appears in two reports available on the NDIS Portal.

Please look briefly at the reports copied on the following three pages. How many of these terms do you understand, with absolute confidence? How many do you think a person with an intellectual disability would understand? And how well do you think a support worker paid $60,000 per year would communicate the information to a person of average intelligence, but unable to see the document?

• Core Supports
• Capacity Building Supports
• Capital Supports
• Stated Supports
• In-Kind supports
• Allocated Funds
• Spent Funds
• Last Payment Date
• Consumables
• Assistance with daily life
• Assistance with social and community participation (and is this different to assistance with daily life)?
• Assistive Technology
• Improved Daily Living
• Improved Health and Wellbeing
• Support Coordination
• Coordination of Supports
• Agency Managed Supports (It’s not what you think)
• Plan Managed Supports (Nor is this)
• Self Managed Supports (But this is, mostly)
• Note – with the last 3, the key distinctions are is who can be engaged to provide a good or service, and who processes the payment – nothing more, and nothing less.

Conclusion

It’s now 3:55 pm on submission day, and I am pretty much exhausted. I’ve been working on this for 3 days, and thinking about it for a week prior to that. At the height of my professional life, I would have written this in an afternoon, and in a much more coherent fashion. That’s how much my experience with the NDIA has harmed me.

But this submission is not about the harm caused to me, or the far more extensive harm caused to many others. It’s about the culture and capability of the NDIA.

At the beginning of my submission, I put up a string of words to describe the culture: Complex; Frustrating; Adversarial; Toxic; Unkind; Unhelpful; Ugly; Confusing; Archaic; Punitive; Secretive; Opaque; Obsessive; Arrogant; Disrespectful; Dictatorial. With more time, I might have explored each of these terms and illustrated them, but I think the discussion I have provided can connect readily to most of them.

Culture of an organisation is set at the top of the organisation, and inherited from its predecessors. In a single word, the NDIA can only be described as having a dreadful culture that can only have come from those who directed and controlled it – the executive leadership, the board and the political context in which it was created.

I have no doubt, as an individual, that the culture of the NDIA is directly inherited from the Liberal/National Government led by Tony Abbott – the same government that put in place the manifestly unlawful Robodebt scheme. This culture has become deeply ingrained in the organisation, and changing it will require sustained, substantial effort.

Or, blowing it up and starting again, as has been the expected bombshell news of today regarding the AAT – also comprehensively corrupted by LNP culture.

Minister Shorten, the new board, and the new CEO have my deep respect based on their past achievements and contributions. But they have a gargantuan task in front of them. They must be prepared to change the people in the NDIA, or to change the people in the NDIA! That is, by retraining those who can be retrained, and by replacing those who cannot be retrained. They must be prepared to insist and actively drive, with considerable intensity, the adoption of co-design, supported by highly regarded experts in the practice, with absolute demand that every business capability of the NDIA be codesigned by people who will simultaneously design services, process, structure, policy, rules, controls and enabling technologies. They must be prepared to throw away the rotten elements of the current systems and processes, and they must err on the side of over- supporting participants until they are certain that replacement culture and capability is no longer biased to under-supporting them.