Submission 692 — Name Withheld (692

SECOND SUPPLEMENTARY SUBMISSION

Senate Community Affairs Legislation Committee

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill

2026 Submitted: 9 July 2026 CONFIDENTIAL — Submitter requests anonymity. Name and identifying details not for publication.

Introduction and Purpose of This Submission

I have previously made a submission to this inquiry (26 May 2026) and a supplementary submission (30 May 2026), which addressed fiscal framing, assessment validation, transition sequencing, First Nations participation data, and the particular risks this Bill poses to people with intellectual disability and to participants in Far North Queensland.

This second supplementary submission adds three further matters that my previous submissions did not address: my own lived experience of acquired brain injury (ABI) and ME/CFS as compounding, invisible, fluctuating disabilities; a gap in the Bill that I believe the Committee should note directly — the absence of any measure addressing provider-side cost drivers and misconduct, despite the Bill’s cost-control rationale resting heavily on tightening participant-side funding and assessment; and a question I ask the Committee to put to the Government regarding Specialist Disability Accommodation and Supported Independent Living approval delays for people with severe ABI.

These three matters share a common thread. This Bill’s assessment and budgeting mechanisms appear to assume a participant whose needs are stable and predictable; its provider integrity measures may not fully reach every practice that can divert funding away from a participant’s actual support; and its sequencing may not have accounted for the downstream effect of funding delays on hospital discharge for cohorts such as ABI. None of these three assumptions holds cleanly in my own case or in what I am aware of professionally, and I set out below, specifically, where each one breaks down — testing it against my own direct experience where I am able to, and flagging it as a question for further inquiry where I am not.

I make this submission in a personal capacity, as a person with lived experience of acquired brain injury (ABI) and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), who is a current NDIS participant. I am not writing on behalf of any organisation, and I request that my name and identifying details be withheld from publication.

1. Acquired Brain Injury and ME/CFS as Compounding, Invisible,

Fluctuating Disabilities

I have both an acquired brain injury and ME/CFS, and these two conditions compound one another: my functional capacity varies from day to day, and a period of relative stability can be followed by a marked decline with little warning. Two specific mechanisms in this Bill interact directly with that variability: the format of the proposed access assessment, and the plan end-date and funding carryover rules. I set out below, specifically, what each of these means for someone with my conditions.

1.1 Assessment format, cognitive fatigue, and post-exertional malaise

As an existing participant, the assessment that will actually affect me is not the access/eligibility functional capacity assessment informed by the Technical Advisory Group, which I understand primarily affects new applicants from 1 January 2028. It is the separate support needs assessment, built on the I-CAN v6 tool, which will be used to set my budget as I transition to new framework planning from 2027 onward. I raise this assessment specifically.

I understand this assessment is expected to take approximately three hours, and that it can be split into multiple meetings if needed. I do not know how ‘if needed’ is determined as a matter of policy, but I can speak to how it has played out for me in practice. In previous LAC meetings and NDIS planning processes, I have told the person conducting the meeting, more than once, that I was too tired to continue beyond an hour and needed to stop. On each occasion, rather than the meeting being paused or split, I was pressured to keep going. This is not a hypothetical risk to me; it is what has actually happened when I have tried to self-advocate for exactly the kind of accommodation the ‘if needed’ language suggests should be available. I have no reason to expect the support needs assessment process will be different, unless the Committee can confirm that stopping and splitting a session is a right a participant can invoke themselves, rather than something left to the discretion of the person running the meeting.

For someone with ABI, a continuous sitting beyond an hour risks measuring cognitive fatigue rather than genuine functional capacity. For someone with ME/CFS, the risk is more direct again: post-exertional malaise (PEM) is triggered when physical, cognitive, or emotional exertion exceeds an individual’s tolerance threshold on a given day, with symptom worsening typically delayed by hours or days and lasting for days or longer afterward. Sustained cognitive exertion of the kind involved in a structured assessment, particularly one where a participant’s request to stop is not honoured, can exceed that threshold well before the three-hour mark.

A person’s presentation in a single sitting, or across sessions held close together, is not necessarily representative of their support needs across a week, a month, or a year. If my own assessment were to occur on a day when my symptoms were well controlled, or conversely on a day of significant fatigue or during a post-exertional crash, the resulting picture of my needs would be inaccurate in either direction. A system that assesses capacity at one point in time cannot reliably capture conditions that are defined by their variability, and should not impose a process that risks worsening the conditions it is attempting to assess.

There is a further risk specific to ME/CFS that I ask the Committee to consider: day-to-day variability is not just difficult for a single assessment to capture, it can actively work against a participant’s credibility. An assessor unfamiliar with ME/CFS may read the fact that I managed a task on one day but cannot manage it the next as inconsistency or exaggeration, rather than as the defining feature of the condition itself. This risk is separate from the risk of an inaccurate result — it is a risk that fluctuation is read as a reason to discount what a participant reports, rather than as a reason to weigh it more carefully.

There is a further, compounding problem specific to ABI that I ask the Committee to consider. Cognitive impairment can affect a person’s ability to notice, remember, or articulate their own needs in the moment they are being asked about them. This means a gap in an assessment is not necessarily a sign that a need does not exist — it can be a direct symptom of the very impairment the assessment is meant to identify. If a support need is missed for this reason, the consequence is a budget that does not reflect my actual needs, potentially for the life of a multi-year plan.

Correcting a missed need after the fact requires me to first recognise that something is missing, which is the same capacity that may have prevented me from raising it during the assessment. ABI commonly affects executive function specifically — the capacity to initiate

tasks, plan ahead, organise information, and remember to follow through on intentions. These are precisely the capacities a participant needs to identify a gap in their own plan, initiate a review, gather evidence, and follow it through to completion. In my past experience, correcting a plan once it is wrong has been a lengthy process that I have had to drive myself — identifying the gap, initiating a review, and repeatedly explaining my circumstances. The support available to help with this is generally a support coordinator, and in my experience, the coordinator allocated to help me has often never met me before and has no prior knowledge of my history or needs. This means the correction process itself requires me to rebuild context with someone unfamiliar, at the same time as I am trying to demonstrate that my needs were not adequately captured — placing the greatest administrative burden precisely on the executive functions that ABI is most likely to impair.

I am plan-managed, but plan management pays providers and administers claims against my existing budget; it does not include anyone whose role is to check whether that budget is actually right for me, or to notice if my needs have changed. That checking function, in practice, falls to support coordination — and I have previously run out of support coordination funding within a plan and been left with no one in that role at all for the remainder of it. There is no one who checks in on me as a matter of course. If I do not identify a problem and drive the process of fixing it myself, it does not happen. For a condition where cognitive impairment can itself be the reason a problem goes unidentified, a system that depends entirely on the participant to notice and act is not a neutral default — it is a structural gap that falls hardest on the people least able to compensate for it. I ask the Committee to consider whether there should be a minimum, non-optional check-in function within a plan, independent of whether support coordination funding remains available, for participants with cognitive impairment.

1.2 Assessment tool validation I distinguish here between two separate processes. The Technical Advisory Group is advising on the definition and threshold for the access/eligibility functional capacity assessment, which primarily affects new applicants. Including ABI and ME/CFS expertise on that Group is a welcome step for future applicants, but it does not affect existing participants like myself, and it is not the same question as whether the I-CAN v6 tool used in the support needs assessment — the process that will set my own budget — has been validated for people with ABI and ME/CFS. As a participant, I have no access to information about whether that validation has occurred, and I am not aware of it having been made public. I ask the Committee to require the Government to confirm, and make public, whether the I CAN v6 tool has been validated specifically for people with ABI and ME/CFS, separately from the work of the Technical Advisory Group on the access threshold.

I note that a broadly similar single-assessment model was attempted in 2021 under the name ‘Independent Assessments’, and was abandoned by the Government of the day following opposition from disability groups, the then Labor opposition, and state and territory governments, on grounds that included the assessment tool not having been adequately validated for the populations it would assess. I ask the Committee to consider whether the current support needs assessment model differs from that earlier proposal in ways that address the concerns which led to its abandonment, or whether it risks repeating them.

1.3 Plan structure and unpredictable needs My own NDIS plan runs for an extended, multi-year duration. Over that time, I am expected to anticipate and allocate funding for needs I often cannot predict in advance — including medical appointments arising from an unplanned deterioration, or additional support required during a flare in ABI symptoms or a post-exertional crash related to my ME/CFS. Crash cycles in particular can arrive with little warning and last for an unpredictable period, meaning support needs in a given month can differ substantially from what could reasonably have been planned for at the start of a multi-year plan. There is no discrete allocation within

the Capacity Building or Social, Civic and Community Participation budgets for health-related activity; these needs are met from within a broader, flexible pool. A fixed plan end-date with no carryover of unspent funds, combined with support needs that do not arrive on a predictable schedule, creates a genuine risk that funding will not align with when I actually need it.

1.4 Community participation as a health access mechanism For me, community participation and capacity-building supports are not a lifestyle add-on. They are frequently the practical means by which I get to medical appointments, maintain routines that support my health, and remain connected to the allied health engagement that helps prevent deterioration. A reduction to these budget categories, even where an amendment protects health-related activity in principle, risks a real-world reduction in access, because these activities are not funded through a separate, ring-fenced line.

2. Provider-Side Cost Drivers and Misconduct: Do Existing Measures Reach These Practices?

I raise this matter because I believe it is material to the Committee’s assessment of whether this Bill’s savings measures are appropriately targeted. As a single participant, I cannot speak to the scale of this issue across the scheme. I can set out what has happened in my own case, and ask the Committee to consider whether it warrants investigation as a broader pattern.

I understand this Bill does include some measures directed at provider conduct: an expansion of mandatory registration requirements for providers delivering support to participants at higher risk of abuse or exploitation, new civil penalties enforceable by the NDIA, strengthened NDIA investigation and information-gathering powers, and increased evidence requirements for payments, including at the point of service. I raise this matter not because the Bill contains no provider integrity measures at all, but because I am not able to tell, as a participant, whether these specific measures extend to the practices I describe below. I ask the Committee to seek that clarification from the Government.

In my own experience as a participant, I have encountered the following:

• Being overcharged for supports and services beyond agreed rates.

• A service provider that I believe has drawn down my funding at a rate disproportionate to the support actually delivered.

• A support worker making false claims about support that was not, in fact, provided.

• A service provider cancelling my scheduled support on the day, on multiple occasions, in order to prioritise onboarding new clients — leaving me without service continuity and without adequate notice to arrange alternative support. I raise this as an example of the kind of conduct the Bill’s provider registration and penalty measures might reasonably be expected to prevent, rather than as a claim about cost to the scheme.

• Support workers using paid support hours to attend to their own personal errands, and not disclosing this.

• Repeated staff turnover at a support coordination provider — due to maternity leave, the transient nature of the Far North Queensland workforce, or staff simply moving on — that I did not request and had no part in causing. Each time this happened, despite my specifically requesting a handover between outgoing and incoming staff, no handover occurred. Instead, I was charged for the calls and emails the provider

used to notify me of the change, and for a full reassessment process repeating information I had already provided. This process cost me energy, which matters given my conditions, but the more relevant point for this submission is that it cost me budget: I was billed for the provider’s own internal staffing changes and the administrative work of managing them, not for support delivered to me.

• Allied health providers charging me a higher rate than they charge non-NDIS clients for the same service. When I directly challenged one practitioner on this, I was told they were simply following NDIS pricing guidelines — not that my particular support needs required any more time, skill, or complexity than a non-NDIS client receiving the same service. The service itself required no more work.

• Reports required specifically as proof of need for NDIS purposes — as distinct from clinical reports arising from ordinary treatment — were consistently charged to me as separate, additional appointments.

None of these experiences reflect me drawing down more funding than I needed. They reflect funding leaving my plan through provider practices that are, at minimum, poor conduct, and in the case of the false claims made by a support worker, may constitute fraudulent billing. The staff turnover example is a distinct kind of practice worth the Committee’s attention on its own terms: it is not overcharging for a service I received, but being charged at all for a provider’s internal staffing decision that I had no part in and did not request — the notification calls and emails, and the resulting reassessment, are the provider’s own administrative cost of managing their workforce, not a support delivered to me. On the pricing point, I am in a position to say the justification does not hold in my case: I directly challenged the practitioner, and their response was that they were following NDIS pricing guidelines, not that my support needs required extra time, skill, or complexity relative to a non-NDIS client receiving the same service. The NDIS Quality and Safeguards Commission’s own guidance states that charging NDIS participants a higher price than other customers, without being able to justify the difference, is a breach of the Code of Conduct; ‘we follow NDIS pricing guidelines’ is not, on its own, a justification of that kind. This is also not only my own experience — the Government’s own 2023 NDIS Review documented widespread reports of participants being charged more than non-NDIS clients for identical services. Separately, I was also consistently charged additional, standalone appointment fees for reports required specifically as proof of need for NDIS purposes, distinct from clinical reports arising from ordinary treatment — an administrative cost generated by the scheme’s own documentation requirements, billed to me rather than absorbed as a cost of participating in the scheme. The increased evidence requirements for payments may be intended to address conduct of this kind, and if so, I would welcome that. However, I have not seen anything that specifically addresses service continuity obligations when a provider cancels to prioritise other clients, or a provider billing a participant for its own internal staffing changes. I ask the Committee to confirm with the Government whether these specific practices are covered by the Bill’s existing provider integrity measures, and if not, whether they should be.

The Bill’s savings rationale is substantially premised on the scheme’s cost growth being unsustainable. I do not know what proportion of scheme-wide cost growth is attributable to provider-side practices of the kind I have described, and I am not asking the Committee to assume my experience is representative. I am asking the Committee to seek that data from the Government, alongside data on how effective the Bill’s existing provider integrity measures are expected to be in addressing it, before concluding that tightening participant facing budgets and assessment processes is the appropriate primary response to cost pressure.

I recognise that much of provider registration, billing compliance, and worker conduct regulation sits with the NDIS Quality and Safeguards Commission rather than this Bill alone. However, I ask the Committee to note in its report whether the specific gaps I have identified

— service continuity obligations, and providers passing their own operating costs on to individual plans — are addressed anywhere in the current reform package, and if not, to consider recommending that they be added.

3. A Question for the Committee: Specialist Disability Accommodation

and Supported Independent Living Approval Delays

I do not have direct personal experience of this issue. However, in my capacity as a consumer representative within Queensland Health, I am aware that Cairns Hospital’s rehabilitation unit has experienced a high proportion of patients with a neurological presentation — in the order of 75 percent — facing prolonged discharge delays, including delays attributable to outstanding NDIS-related decisions such as SDA and SIL approvals. I raise this as my own awareness from that role, not as a published statistic, and I ask the Committee to seek and verify the underlying data directly from Queensland Health and the Government rather than relying on my account of it. If this pattern holds more broadly, it means people with severe ABI who are clinically ready for discharge are occupying acute or sub-acute hospital beds for reasons unrelated to their clinical care, solely because a housing and support decision is outstanding.

If that pattern is confirmed, any tightening of NDIS funding criteria under this Bill risks compounding it rather than relieving it. I ask the Committee, if the data bears this out, to consider recommending an expedited SDA/SIL decision pathway for NDIS participants with severe ABI who are awaiting discharge.

Recommendations

1. That the Committee clarify whether a split support needs assessment (across multiple meetings) is a right participants can invoke themselves during a session for a disclosed fluctuating condition, or a discretionary accommodation left to the person conducting the meeting. Based on my own repeated experience in LAC meetings and planning processes, self-advocacy to stop has been met with pressure to continue rather than the meeting being paused. I ask the Committee to recommend this be made an explicit, enforceable participant right, particularly for conditions such as ME/CFS where sustained exertion can itself trigger post-exertional malaise and a deterioration in the participant’s condition.

2. That the Committee require the Government to confirm, and make public, whether the I- CAN v6 tool used in the support needs assessment has been validated for people with ABI and ME/CFS, distinct from the Technical Advisory Group’s separate work on the access/eligibility threshold.

3. That the Committee seek the Government’s response on how the current support needs assessment model differs from the 2021 Independent Assessments model, which was abandoned following sector opposition on grounds including inadequate validation, and whether the concerns that led to that abandonment have been addressed.

4. That the Committee consider whether assessor training for the support needs assessment specifically addresses the risk of day-to-day variability in conditions such as ME/CFS and as a defining feature of the condition.

5. That the Committee consider requiring a proactively-offered, lower-burden review pathway for participants whose cognitive or communication impairment may plausibly have

affected the accuracy of their own support needs assessment, rather than relying on the participant to identify and pursue a correction unassisted.

6. That the Committee consider recommending that continuity of support coordinator allocation be prioritised for participants with cognitive impairment, so that any review of a missed need does not require rebuilding context with someone unfamiliar with their history.

7. That the Committee consider recommending a minimum, non-optional check-in function within a plan for participants with cognitive impairment, independent of whether support coordination funding remains available.

8. That the Committee consider the interaction between fixed plan end-dates, non-carryover of unspent funds, and unpredictable support needs, particularly for participants with fluctuating conditions.

9. That the Committee seek confirmation from the Government on whether the Bill’s existing provider integrity measures (expanded registration, civil penalties, payment evidence requirements) extend to cover service continuity obligations when a provider cancels support to prioritise other clients, and the practice of participants being charged for a full reassessment on repeated staff turnover despite a requested handover — and if not, whether they should.

10. That the Committee seek data from the Government on enforcement of the existing Code of Conduct fair pricing rule, given the NDIS Review’s own findings that participants are commonly charged more than non-NDIS clients for identical services, and consider whether stronger enforcement or a more specific mechanism is needed.

11. That the Committee ask the Government whether the practice of charging participants separate, additional appointment fees for reports required specifically as proof of need for NDIS purposes is intended, and whether this administrative cost of the scheme’s own documentation requirements should instead be met by the scheme rather than billed to individual participants.

12. That the Committee seek data from the Government on the extent to which scheme cost pressure is attributable to provider-side billing practices and conduct, separate from participant utilisation, and on how effective the Bill’s existing provider integrity measures are expected to be in addressing it.

13. That the Committee seek and verify data from Queensland Health and the Government on the proportion of neurological rehabilitation patients, including at Cairns Hospital and Mackay, Rockhampton, experiencing discharge delays attributable to outstanding SDA/SIL decisions, and, if this pattern is confirmed, consider recommending an expedited SDA/SIL decision pathway for NDIS participants with severe ABI awaiting discharge.

Thank you for the opportunity to provide this additional information to the Committee’s inquiry.