To the Senate Standing Committees on Community Affairs

Submission relating to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024.

Prepared by Mark Toomey Campaign Lead for the RoboNDIS Campaign and parent of a 45 year old NDIS participant who has multiple severe disabilities.

Submitted on 16 May 2024.

Dear Senators.

Failing to Plan is the functional equivalent of Planning to Fail.

Proper Planning Prevents Poor Performance

These truisms have been embedded in my psyche since my earliest days working in the IT Industry, more than 45 years ago. Largely because these truisms have been studiously ignored by leaders across many fields of endeavour, I have enjoyed a career that was focused on transcribing the lessons of failure into the principles, rules and structures that enable success. At the point of retirement, I was regarded as the global thought leader for governance of information technology, having been the ISO appointed lead for developing the corresponding international standard, and having published a frequently-cited book on the subject.

I know what causes change to fail. Four of the principle causes of failure are:

Failing to properly plan the change from first steps to completion.
Failing to govern the implementation of the plan by ensuring that it performs as planned and by controlling the risks that may limit success.
Failing to ensure that those opposed to the change (the primary risk that is too frequently overlooked) are identified and managed so that the change is not defeated.
Failing to engage and include those most affected by the change in the whole journey.

The NDIS is a monumental change in the way Australia deals with people who are not able to do everything that a perfect person can do.

Its implementation has delivered, yet again, a comprehensive litany of failure by government to properly plan, govern and manage a program of change, leading to missed objectives, cost blowouts and trauma.

Now, I refer to the National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024

This bill is the Government’s initial response to the NDIS Review, tabled in Parliament in

December 2003. There can be no doubt that the bill has generated immense concern among the disability community. That is the primary reason that you, as our representatives, are conducting your enquiry.

It has become clear that the entire Australian Disability Community has lost trust in the NDIS and the government.

Throughout the term of the Morrisson government, and the years leading up to it, there was a severe erosion of trust in all of the National Disability Insurance Agency, the NDIS Quality and Safeguards Commission, the Liberal/National Government and the ongoing rent-seeking “Disability Industry”. Labor came to government with a clear promise to fix the NDIS, which it had originally designed in partnership with the disability community. But almost nothing changed, and by the time this legislation had been tabled, many parts of the disability community regarded Bill Shorten as a failed Minister, just like Stuart Robert and other ministers before him.

The NDIS Review recognised that loss of trust is a major issue for the scheme, and made very specific recommendations on what the government needed ot do to rebuild trust.

Even the most incompetent change manager knows that an effort to build trust must precede any action taken to deliver change. But, My Shorten and the Albanese Government seem to have ignored all the relevant advice in the NDIS Review Report, and forged ahead to blindly push through change that is poorly planned and divisive.

In these circumstances, even the best (and there are some) features of the proposed legislated changes will be howled down, because they do not resolve the unacceptable consequences of the worst features.

Please refer to the attached Appendix to this submission. It contains a substantial selection of references to Trust in the NDIS Review. Over and over, the Government is told that it must rebuild trust, and it is told HOW to rebuild the trust that has been eroded almost from the beginnings of the scheme.

But no, the government and the NDIA have continued to blunder along the same pathways that are proven to destroy trust.

I quote just a couple of points from the appendix:

On Page 50 (of the NDIS Review): To build trust in the process of this reform, we recommend creating an NDIS Review Implementation Advisory Committee (see Action 24.1), to include people with disability and monitor and advise government on implementation. This should be supported by the right coordination and expertise in government to deliver a holistic and well-designed package of reforms.

Delivering on our commitment to a better NDIS

Even a first year high school student should understand that this means set up the NDIS Review Implementation Advisory Committee before doing anything else. Does it exist? There is new content on the NDIS website addressing this, published on 15 May 2024, just two days prior to submission deadline for your enquiry. [NDIS (https://www.ndis.gov.au/news/10100-delivering-our-commitment-better-ndis)] contains the following:

Architecture to implement reforms

The Australian Government will continue to work closely with the disability sector to consider the recommendations of the Independent NDIS Review, and transition towards a disability support ecosystem capable of supporting all Australians with disability, now and into the future.

The Government has already begun to take initial, immediate steps in response to the historic Review. This investment will provide the architecture needed to bring together people with disability, Government, and other experts to support the implementation of the reforms.

These strengthened governance and advisory arrangements will consist of:

NDIS Implementation Advisory Committee that will oversee and report on implementation, and will have representatives from the disability sector and Government and other experts with relevant experience. The Advisory Committee will report to the Disability Reform Ministerial Council every six months.
NDIS Implementation Working Group that will coordinate and collaborate on NDIS reforms across all Governments and will draw in relevant service delivery agencies as required. The Working Group will ensure coordination across Australian governments and agencies and will provide updates on progress to the Implementation Advisory Committee.

This brand new information makes it clear that in its rush to be seen as doing something to reign the appearance of the NDIS budget blowing out of control, the Government has ignored the most profound of the advice given it by the NDIS Review. Rebuild Trust before doing anything else!

Six months after the NDIS Review Report was delivered, we already have legislation, supported by a statement that strengthened governance and advisory arrangements will include an NDIS Implementation Advisory Committee that will oversee and report on implementation.

Once again the Government and the NDIA demonstrate that they have NO IDEA of what Co-design is, or how it works. Co-design is not an occasional look from a high level. It is people

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in the room, at the same table, working together, collaboratively, to prepare and implement a design that is not subject to a check at the end, but which is agreed and affirmed EVERY each day by the people who have substantial stakes in the outcomes and who are living and breathing the process.

At the very least, Dear Senators, you need to send this bill back to the Government with an instruction to start again, from the beginning, this time following the guidance in the NDIS Review.

Tell the Minister to focus first on regaining the trust of the community. Doing so does not require new legislation. It merely requires that the NDIA faithfully follow the instructions it has already been given in its existing legislation. Tell the Minister to:

Direct the NDIA to immediately and absolutely conform to the prescribed methods of preparing NDIS Plans.
Direct the NDIA to immediately implement 100% transparency on its internal policies, procedures, guidelines and any other instruments relating to scheme admission, to the development and administration of plans.
Direct the NDIA to harvest the lessons from thousands of AAT appeals, and with total transparency, apply those lessons to its existing its internal policies, procedures, guidelines and any other instruments relating to scheme admission, to the development and administration of plans.
Direct the NDIA to immediately desist its soul-destroying breaches of Model Litigant obligations at the AAT.
Direct the NDIA to cease its practices of ignoring and attempting to refute expert advice from clinicians.
Direct the NDIA that if it has a genuine belief that, in any particular case, the advice of clinicians is incorrect, it must be the responsibility of the NDIA to prove beyond reasonable doubt that the advice is flawed, rather than forcing the participant to prove that the advice is valid. Make it abundantly clear to the NDIA that no NDIA Planner, Delegate, or even the CEO has the power to override a clinical assessment and recommendation, simply because none of these individuals are qualified, practicing clinicians with intimate knowledge of the participant.

Think for a moment, if your GP referred you to a specialist, who discovers a need for urgent surgery, and your request for the surgical intervention is rejected by a level two clerical officer who claims that you do not yet have enough evidence of the need!

I could go on, Dear Senators. But I think I have made my primary point. You must reject this ham-fisted, poorly designed and completely unsatisfactory legislation, as well as the process which has brought it to you.

Thursday, 16 May 2024 4

Beyond that, you must collectively understand that there are also substantial issues to be resolved in respect of the NDIS Review. It is seen by many as not being faithful to the insights and needs of the disability community. Among other things, it has absolutely failed to address the inner workings of the NDIA, which many of the people involved in the RoboNDIS Campaign regard as at best inefficient and skewed, probably hostile to the needs of people with disability, and likely to be the product of internal corruption. You should all know that the RoboDEBT Royal Commission uncovered extreme examples of appalling conduct in DSS, which was occurring alongside the NDIS establishment and which in some instances involved the same individuals named in the RoboDEBT Royal Commission report.

Where there is secrecy, there are certainly secrets. It is intolerable that the NDIS operates on the basis of secret processes and secret rules. We know that secrets exist because an endless stream of responses to FOI requests tells us over and over that release of certain information may compromise agency operations – confirmation that secrets exist.

DSS was hiding secrets, and it took a Royal Commission to uncover them.

The NDIA is hiding secrets too. It’s high time for a Royal Commission to reveal them as well.

A special note for Senator Hollie Hughes.

Many people in the disability world are watching your work with great interest. Like you, many of us are parents of people who live with disability. Unlike you, many of us are exhausted by the never-ending battle against a flawed system that seems mostly configured to regard its participants and their families and friends as the enemy. Just like past governments and even today’s Labor government regarded as unworthy those unfortunate people who, for whatever reason, survive on a pension.

You were not in a position to influence your party’s destruction of the NDIS. To be truly credible, you need to do more than just hold the Albanese Government to account. You need to hold your own party to account. You probably know where to start on that, but if you need any further insight, please just remember that both the fish and the potato rot from the head!

Sincerely,

Mark Toomey

Thursday, 16 May 2024 5

Appendix: NDIS Review and Initial Legislation – focus on TRUST

Highlights in red text are editorial, for emphasis. Other text formatting is from the original.

The word Trust appears 55 times in the NDIS Review report. It appears 6 times on the first page of the covering letter. This document highlights some nn of these and concludes with a very brief discussion of how the Trust message has been lost on the first outing.

On page 18: The Review’s terms of reference gave us three overarching objectives:

Putting people with disability back at the centre of the NDIS.
Restoring trust, confidence and pride in the NDIS.
Ensuring the sustainability of the NDIS for future generations.

On Page 23: While we have laid out a blueprint for reform, we also know there is much detailed work still to come to implement our recommendations. This work must continue the way it has begun — in partnership with people with disability. Continuing the engagement is the only way to ensure the success of these reforms and to continue to rebuild trust.

On Page 27: This narrow, adversarial approach is one of the reasons why there has been a breakdown of trust between people with disability and the NDIA. …. Rebuilding this trust is essential to fixing the NDIS.

On Page 31: The lack of trust between participants and the NDIA, driven by the adversarial planning process, and at times a ‘use it or lose it’ approach by the NDIA, has encouraged people to fight for as much support as possible. … People also do not trust the NDIA to respond in a timely or adequate way if circumstances change.

On Page 50: To build trust in the process of this reform, we recommend creating an NDIS Review Implementation Advisory Committee (see Action 24.1), to include people with disability and monitor and advise government on implementation. This should be supported by the right coordination and expertise in government to deliver a holistic and well-designed package of reforms.

Page 88:

There should be increased investment in getting the budget right for each participant The new participant pathway should feature a more structured way to gather information about the participant, their circumstances and their support needs. The new process would feature a consistent needs-based assessment process to set budgets at a whole-of-person level. The budget should be based primarily on support needs and intensity, … This would include reviewing any existing information provided by the participant and trusted professionals and then meeting with the participant to understand their goals, strengths, circumstances and level of support needs.

Page 89:

There should be more support for people with disability to understand how they might use funding The future system should separate the determination of the budget from developing a plan of action to use the funding. It should also take a trust-based approach in how participants can use their budget, and make it easy for participants to comply with rules. Compliance should be encouraged through guidance and support, with more hands-on interventions used where there are serious risks or history of issues.

Action 3.6:

The National Disability Insurance Agency should adopt a trust-based approach to oversight of how participants spend their budget, with a focus on providing guidance and support.

Page 94:

Families generally tell their experience to an early childhood partner who makes a recommendation for a plan budget. This is usually approved by a separate delegate in the National Disability Insurance Agency (NDIA) — who has more than likely never met the family before. It is confusing and frustrating for families when the approved plan budget is not in line with what the early childhood partner or providers had recommended. This leads to distrust.

Page 119:

“…there is a ‘hidden nature’ of NDIA decision-making and lack of clear evidence linking the NDIS Act and decisions, accompanied by poor communication of decisions by the NDIA. The impact of the perceived hidden nature of decision-making is twofold: producing a negative impact on public trust and confidence about decisions and the transparency of decision-making processes; and hindering NDIS participants to exercise their rights to review and appeal processes.” - Law Futures Centre, Policy Innovation Hub and The Hopkins Centre, Griffith University

Further work on culture and capability

On Page 255: Further work on the culture and capability of the NDIA and the current NDIS Commission is needed to regain the trust of the community.

Implementation guided by lessons from past experiences

On Page 269: Implementation should be guided by lessons from the past. Implementation of these recommendations has much to learn from the experience of the initial NDIS roll-out, as well as subsequent reforms. While changes to a national scheme of the scale and complexity of the NDIS will inevitably experience road bumps, we have identified several common issues to be taken into account in implementing our recommendations. … The subsequent attempted introduction of Independent Assessments in 2021 further demonstrated a failure to implement reforms as intended or in partnership with people with disability. This process suffered from insufficient design with people with disability and the sector, a lack of consultation with independent experts, and inadequate testing. This undermined community trust and created lasting fear, stress and uncertainty for NDIS participants, families and carers.

Best practice approach to implementation improves outcomes

On Page 272: A best practice approach to implementation will improve outcomes. Recommendations must be delivered sensitively in consultation with people with disability and in line with implementation best practice. This is essential to build and maintain confidence in the integrity of the NDIS with people with disability and the Australian community. A best practice approach to implementation should align with these following principles:

Genuine design with people with disability, their families, carers, Disability Representative Organisations, workers and disability service providers that centres and leverages the lived experience and expertise of the disability community and sector. This would involve people with disability at all stages of the design process, including identifying when new processes are ready to be implemented. …

On Page 273:

Frequent and transparent communications with stakeholders, including current participants. This should aim to not only help people to understand the reforms and how they may be affected, but also to build and maintain trust in the scheme by showing how people with disability are being included in the implementation process.