Attn. Legislative Affairs Committee - National Disability Insurance Scheme (NDIS)

Amendment (Getting the NDIS Back on Track No. 1) Bill 2024* (*hereafter called ‘the Bill’)

As family members and NDIS nominees of a participant with complex needs, we welcome the opportunity to provide a submission in response to the National Disability Insurance Scheme (NDIS) Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 (the Bill) and give voice to the wishes of a person who cannot speak adequately for himself.

Our Background

We are the parents of a middle-aged NDS participant with high and very individual needs and a life-long history of needing supports. We have been part of his journey since birth and have contributed to the disability discussion for over forty years as advocates, delegates and as invited speakers, including presenting at the National HAAC Conference, Adelaide, 2002 and the World Autism Congress held in Melbourne the same year. We have added to our teaching background by completing many disability and management related training programs to add to our professional skills. We have spent over forty years working with medical and allied health professionals, special and mainstream schools and adult disability service providers and we have developed a model of support described by our son’s current therapists as exemplary.

Every person is unique, however the combination of our son’s complex disability and his path through the education system and adult disability supports has made him an outlier. He has had over forty years of therapy and assessment with little benefit. It is acknowledged he has significant needs but he has often fallen through gaps in systems and regulatory frameworks and has been let down many times by the systems meant to help him, leaving him very traumatised. He says, “Enough”. Just the thought of more assessment, just hearing the name NDIS or interacting with the disability system in any way is traumatic for him.

He sees himself as a person first, a citizen and a voter, not a series of disabilities. He just wants to be a regular guy with an independent life. Over fourteen years ago, with no accommodation support on offer, we helped our son purchase a home and he has successfully lived there alone with 24/7 support. Prior to the NDSI he was supported by a Victorian Individual Support Package (ISP) that was both flexible and responsive to his needs. We were able to self-manage the ISP funds, choose his care team and cut out disability providers as much as possible. This meant we could control the quality of care and avoid the abuse and mistakes providers condoned. It also meant he got the support he needed but handed back tens of thousands of dollars every year because we did not have the back office expenses of a provider.

After transitioning to the NDIS, our son has self-managed his funding, choosing and directly employing his care team but delegating administrative tasks to his nominees and he has continued to live his way alone in his own home with 24/7 support, using NDIS funds to pay his support team.

He has been able to pay his employees a little better than award rates but have money left over in his budget every year because his overheads as an employer are much lower than those of providers. In more than six years on the scheme, he has been able to buy approved supports but save the scheme $574,660 compared to a provider charging the NDIS rate over the same time period: a saving of 16.6%.

We are grateful that the scheme has continued to provide the direct support our son requires to live in his own home. However, the promise he would not be worse off under the NDSI has been broken. Our son cannot purchase the same range of supports he could under an ISP and we have to fight for even the most reasonable and necessary supports. We have been driven to request two internal reviews and in 2023 forced to go to the AAT to overturn a decision to disallow self management. We note that our NDIS planners and senior delegates said they were aware that removing self management would cost more and they did not care.

Introduction

The original NDIS Act is too complex with competing imperatives. The main purpose of supporting people with disabilities is in direct conflict with the Act and Rules about protecting the scheme and minimising costs. The Act is inconsistently applied and not transparent.

Having considered the proposed Bill, read the explanatory memorandum and also looked at comments from lawyers and other groups our preferred option would be to go back to the drawing board and redraft the Bill from scratch.

The Amendment Bill will add more complexity and make the Act more difficult to understand. We believe the Bill leaves the scheme at the mercy of changing government ideologies. It will reduce choice and control leading to more conflict and trauma for people with disability.

Recommendations:

National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 should be rejected in its current form and re-written completely. Detail about the scope of the scheme and how it will be run should be in the Bill, not the NDIS Rules.

The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 should not be enacted until there has been co-design of details with people with disability as primary stakeholders. Nothing about us without us.

The National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No. 1) Bill 2024 should not be enacted until there are agreements in place with the States and other federal departments about “Fundamental Supports” and until those supports actually exist.

We are concerned that although the Bill proposes significant changes for the NDIS, the Government has not released drafts of the new Rules or the tools for the needs assessment so we do not know what they will include. Instead, these are left to be established by the Minister through legislative instrument which in turn means the Minister has significant power with limited oversight by Parliament or those affected. Although the Government has indicated a commitment to genuine consultation with the disability community, this is needs to be reflected in the NDIS Act.

We note in passing that on 26 April 2024 Minister Shorten was able to reach out to individual participants via a personally addressed mail out to explain measures being taken to combat fraud and overcharging. However there was no mention of this Inquiry or the Bill before it. We have been left to find out for ourselves and the timeline for making our son’s voice heard has been very tight.

Detailed Consideration of the Bill

Concerns the Bill has immediately raised include:

• Support needs assessments are determined without participants or their nominees being able to see them before the determination and that determination does not constitute a reviewable decision. Our own experience of outright factual errors in therapist reports and plans written by NDIA planners highlights the need for transparency and that it is essential for participants to be able to have the determination reviewed.

• That the approach of limiting the impairments that meet the disability requirements and of specifying a list of supports that are NDIS supports results in gaps where outliers such as our son, who everybody acknowledges has very significant disability and support needs, could fall through the cracks because they don’t fit the neat boxes or even be directed into the wrong supports.

• Participants are at risk of being removed from the scheme if required evidence is not provided within as little as 28 days. (S54 subclause 36(3)(a). Our experience is that it can take months or years to get service and be able to provide required reports due to a ‘thin market’ and the way in which providers operate their businesses. Participants failing to provide information through no fault of their own could be denied critical support and forced to seek access to the scheme multiple times, clogging up the intake system; putting people with disability at risk and exposing them to repeated trauma.

• We cannot seeing anything in the Bill that will make the planning process transparent.

account of the participant’s own experience and knowledge and that of their nominees

and informal supports. It would be preferable to have this written into the Bill.

e) It is critical that the Bill and the Rules make provision for a review process, including that the outcome of the needs assessment constitutes a reviewable decision, to address disagreement with that outcome. We’ve had experience where NDIA personnel have acknowledged that a decision lacks common sense and is potentially damaging to our son but have used the excuse that the [current] Rules prevent them from reversing the decision.

f) The Bill as it stands does not ensure the participant has an opportunity to see the assessment before it is given to the CEO. The NDIS Review explicitly said the needs assessment report should be provided to the participant before it is finalised - doing so (and if the NDIA works in a collaborative manner) would avoid many of the errors or disagreements that would necessitate reviewing the decision. Again it is critical that the Bill drives transparency by ensuring that the participant has the opportunity to see the assessment report before it is given to the CEO.

3.2 Change from Reasonable and Necessary Supports to NDIS Supports - support categories

a) The list of supports that constitute NDIS supports is prescriptive and risks leaving gaps. It needs an item (ix) allowing the CEO to approve any other support deemed appropriate within the purpose of the NDIS to allow for cases where it is clear there is a need but it does not fit any of the criteria in (I) to (viii). It needs to phrased in a such a way that it doesn’t create a loophole but is there to cover instances where it is clear to all that there is need that doesn’t fit the restrictive criteria in (i) to (vii).

We have, both with the NDIS and through our son’s whole history of interactions with services and funding programs, had the experience of being told it is clear that our son has a significant disability and a clear need for support but he does not fit the criteria, sometimes on a technicality.

b) We are particularly concerned by the phrase “to prevent isolation or segregation of the person” from the community.“ Whilst it is important to prevent NDIS supports being used to isolate people in institutional models of care we fear it will be used by the NDIA to remove our son from his own home and place him in congregate care which, ironically, would result in isolating him.

(The rationale of the NDIA would be that providing round the clock support to him live in his home is isolating him from the community, particularly if he chooses not to go out as much as some NDIA official believes he should. The hidden agenda underpinning this rationale would be an attempt to save money by having shared support. In addition to reducing his choice and control and violating basic human rights, this would be “false economy” as his incompatibility with the congregate care model will lead to recurrence of serious behaviours of concern)

requiring higher ratios of support and the services supporting him in that environment will decide he cannot venture into the community, thus isolating him. Unfortunately this is regarded as hypothetical by the NDIA because this is an assertion from parents, even when backed by reports from therapists and the experiences of others in the past. The “hard” evidence supporting this assertion will only emerge once he is placed in congregate care and the damage is done. Assertions that oversight from the Quality and Safeguards Commission would prevent this abuse have a hollow ring to them in the light of recent stories such as that of Jake’s experiences with ESS (ABC report by Alexandra Blucher of ABC Investigations and Alex McDonald: 7:30 Report, 9 May 2024; Published online 9:21pm with update10:50pm) or the Irrabina case.)

3.3 Change from Reasonable and Necessary Supports to NDIS Supports - Rules

As we previously stated, the Government has not released drafts of the new Rules instead. These are left to be established by the Minister through legislative instrument. Through our experience of slavish application of the letter of the Rules (see 3.4 and 3.6 b)) leading to an unnecessary AAT case we think that drafts of the Rules should have been included in this process in the interests of transparency and of getting them right.

3.4 Information Gathering Powers

We acknowledge the NDIA needs information to enable decisions to be made in the first instance on access to the scheme and then about what supports are required. However the Bill proposes powers that are very broad, including making a participant speak to or be examined by a health professional chosen by the NDIA.

Our son’s path is littered with visits to or by professionals that have caused him such high levels of stress as to create the very behaviours of concern we have worked so hard to overcome. We agree with PIAC who in their “Explainer: Getting the NDIS Back on Track No. 1 Bill” (section 4) suggest these powers could be far more limited. We also suggest a greater flexibility in accepting input from treating professionals.

We recently experienced the NDIA insisting on evidence from certain professionals then refusing to accept evidence from one of them because it was 8 days past its “use by date” (i.e. the report was 1 year and 8 days old at the time of the planning meeting - a situation that even the NDIA’s own legal counsel described as ridiculous during our AAT action). Letters from treating professionals and even preliminary reports from the selected health professionals were also not accepted as evidence. This cost the NDIA (and thus the taxpayer) many tens of thousands of dollars in reviews and an AAT case which could have been avoided simply by some flexibility and understanding in the information gathering process.

We therefore implore the Government to take note of PIAC’s suggestion in regard to information gathering.

3.5 Changes to Spending NDIS funds

The Bill sets out that a reasonable and necessary budget may specify that funding (flexible funding or funding for a stated support) will only be provided where certain requirements are met (clause 32H). We think that the Government has got it wrong at least in the requirement that the supports be provided by a specified person or persons in a specified class.

In our context (our son employs a team of disability support workers) it may seem that ensuring people are suitably qualified would be a given. However we have found that quality support is more a matter of a right relationship than of qualification and expertise. We encourage employees

who are not already qualified to enrol in the Certificate IV course, but we’re finding that they are bringing “institutional” ideas back into the workplace and this is creating the first signs our son will resort to behaviours of concern. (Again we refer to the story about Jake as well cases such as the Irrabina story and Ann-Marie Smith case where the providers are/were all registered providers.)

3.6 Challenging or reviewing processes and decisions - transparency

a) Challenging or reviewing processes and decisions

We note that under the Bill’s proposals participants will have the right to seek review of the statement of participant supports, including the reasonable and necessary budget but will not have a right to seek a review, whether by an internal review by the NDIA or through an external Tribunal process, of some of the new processes created by the Bill.

As we’ve already recommended, the Bill and Rules should ensure the outcome of a needs assessment can be reviewed if a participant disagrees with that outcome. But we further believe that participants should be able to request a review generally of decisions under new processes introduced by the Bill, noting that the NDIA does make errors and there must be a mechanism to correct those errors.

b) Transparency

Our experience right from our son’s first planning meeting has been that NDIS planning and decision processes are opaque. In forums we’ve heard about proposals to improve the pathway and interface between participants and the NDIA, in particular:

• Participants should be able see plans (and now needs assessments) before they are submitted to the CEO.
• The delegate making decisions on a participant’s plan should explain the decision directly to the participant (or their plan nominee).

We cannot find anything addressing this in the Bill or the Explanatory Memorandum.

Under current processes, and we can’t see any change, we meet with a planner who has limited authority to make decisions so refers matters to “higher ups” (our current planner’s term). The decision may be made at this level, or as we discovered from the Tdocuments in our recent AAT case, the “higher up” may seek guidance from the Technical Advice Branch (TAB) who provide advice back to the requestor but make it clear they do not make a decision. The multiple levels in the chain contributed to a lack of fidelity in the transfer of information from us to the eventual decision maker. If the person making the decision had communicated directly with us we may well have avoided a wrong decision and an appeal process that was expensive for the scheme (and thus the taxpayer) and traumatic for us.

The Bill needs to ensure transparency at all levels in the scheme, from guaranteeing that the Minister consults and listens to the disability community in framing Rules and legislative instruments to the interface between the CEO (i.e. the delegates making decisions) and participants or their nominees.

4. Further Recommendations - What we would like to see in the Bill:

4.1 The Bill should include details about the co-design process. We would like to see some legislated mechanism for ensuring individual participants are kept in the loop and given greater opportunity to take part in co-design. Currently, peak bodies, provider lobby groups and advocacy groups have the ear of Government and do an great job of promoting their own interests or those of participants with more common needs. However, the majority of

participants and their significant others are not aware of matters that will affect them and outliers are rarely included.

4.2. The Bill should ensure the NDIS remains evidence based but provide for more flexibility around acceptable evidence. Being an outlier by its nature means there are few if any participants with similar situations/needs. There are often people-specific issues around gathering evidence and how applicable a given tool may be. There may be no agreed best practice tests or treatments for rare disabilities or combinations of them. Over reliance on specific evidence provided by designated providers and attempts to standards supports may not deliver the fairness the scheme hopes to provide.

5. Concluding Remark

We reiterate that without drafts of the Rules and without reflecting the Government’s indicated intent to consult the disability community in the Bill, this Bill is fundamentally flawed and needs to be sent back to the drawing board. We have described our participant as very much an outlier. The combination of having an uncommon and complex disability; an unusual path through life; living in a home he owns; self managing his NDIS funding to directly employ his own team place him in a very small cohort. Our experience has been that if a system works for him it will work for almost anyone. We therefore commend our comments and recommendations to the committee not only because they would better serve our son but would serve people with disabilities generally.

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