Risk of support reduction for adult brother with complex disabilities (Family or carer experience) | External submission

Submission 918

Dear Member of Parliament,

I am responding to the Inquiry for the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

I am responding with urgency in my capacity as a disabled person (Non-NDIS Participant), Carer and Plan Nominee for my older brother, and as Mother to three disabled children with their own NDIS Plans. I wish to preface my submission with the following message:

I urge the government to redact the proposed bill, consult with those impacted, properly, prior to being presented in a more appropriate manner.

This Bill must NOT PASS in the current format.

Whilst I agree with cost-containment being essential to the longevity of the National Disability Insurance Scheme, many of the mechanisms posed within this Bill are not an appropriate way forward. Amendments to the draft legislation are required now, prior to then being re-presented to parliament, in order to safeguard person with a disability (PWD) and their carers.

My specific concerns are with the following proposals within the Bill:

Ministerial Determination: Under the proposed legislation, the Minister would have the power to reduce funding for a type of support across all participants’ plans up to 100%. The specific announced broad stroke application of 50% and 10% cuts to social and community participation supports and Daily Activities supports respectively, regardless of severity or complexity of disability, and with complete disregard to informal supports.
the proposed tightening of eligibility for the NDIS;
the redefinition of permanence of disability and functional capacity;
the introduction of new functional capacity assessment models;
expanded powers to impose broad funding reductions;
increasing reliance on private payment for disability supports despite the majority of participants living on fixed incomes, including the Disability Support Pension;
the absence of meaningful foundational supports outside the NDIS. The immediate action that I am seeking are:

Immediate cessation of progressing this bill through parliament until after the inquiry is complete and concurrently;
Delay the introduction of this Bill until after FULL proper community consultation with stakeholders across the disability sector occurs. This includes PWD themselves, their nominees and carers/informal supports, the support sector workers and allied health and other stakeholders integral to some of the changes being proposed.

There has been no prior consultation on much of the content of this Bill. Giving the disabled population and their caregivers 2 weeks to submit to an enquiry is not appropriate, given the breadth of the changes that are being proposed. and frankly, it is unfit for purpose as it stands, except for the Government’s agenda of cost cutting – which it achieves well, at the expense of those living with and caring for those with a disability.

Submission 918

The Amendments that I am seeking are: (a) That proposed section 34A should be withdrawn from the Bill (b) That proposed Item 19 – Subsection 48(3) should RETAIN a 21 day Timeframe, with allowances made for non-urgent requests (as the 21 day timeframe often isn’t met currently regardless). (c) That proposed subsection 30(1) should NOT read ‘REVOKE’ – it should only relate to suspensions, with 90 days notice of intent to do so, and preferably, with secondary warnings at 60 days and 30 days, via multiple contact methods and nominees, wherever possible. (d) Strict safeguards for any use of AI - Recommendations to Safeguard Participants including

A prohibition on fully automated eligibility or funding decisions in particular
Strict limits on the use of automation in decision-making
Mandatory rights to a human review of any and all automated decisions
Transparency regarding the algorithms and rules used in decision-making
Independent oversight mechanisms to ensure accountability and ensure minimisation of harm to participants, particularly those without access to advocacy or other safeguards. (e) That proposed new subsection 9B(1) should be removed with maintenance of the current definition of Functional Capacity.

In my family’s situation, the risk of this Bill passing in its current form is not theoretical. The effects for myself, my immediate family members, and those I care for would be extreme.

My brother is a disabled adult in his 40’s with complex intersecting mental health, psychosocial, intellectual disability and some physical differences. He lives in Supported Independent Living and requires 24/7 support 1:1. His stability depends on continuity of care – this means - stable staffing, predictable routines, ongoing supported community access, appropriate support coordination, and the ongoing involvement of family advocacy. When these systems are disrupted, his functional capacity does not remain static.

The proposed reforms create real-time risk because they appear to treat support needs as if they can be neatly reassessed, reduced, suspended, or administratively delayed without immediate consequences. For people like my brother, this is not the case. Any reduction in support, delay in reassessment, loss of community access, change in provider arrangements, or disruption to routine may result in increased distress, withdrawal, behavioural escalation, mental health deterioration, loss of independence, increased restrictive responses, hospitalisation, or breakdown of accommodation. These are foreseeable outcomes, not remote possibilities.

(1) Ministerial Determinations

Under the proposed legislation Section 34A, the Minister would have the power to reduce funding for a type of support across all participants’ plans.

It’s been announced that Minister Butler intends to use this power to reduce the funding for:

social, civic and community participation budgets by 50%, and
capacity building daily activity budgets by 10%. Proposed section 34A would create an extraordinary power permitting across-the-board percentage reductions to funding components in “old framework plans” for reasons of “financial sustainability”, without any requirement for:
individual reassessment of reasonable and necessary supports;
consideration of participant safety;
assessment of functional impact; or
analysis of risks arising from funding reduction.

Submission 918

For my brother, losing 50% of his Social, civic and community participation budget would directly impact his quality of life and basic access to his community. He has no capacity to access the environment safely due to his severe intellectual impairments and psychosocial disability.

As a result, his psychosocial disability will escalate, his distress will intensify, his behaviours of concern will increase, and his ability to safely participate in daily life and community life will rapidly deteriorate. This leads to significant risk of further exclusion and segregation. NOTE: This is not rhetoric - this has been seen every year when services are disrupted over the Christmas/New Year period, and worse yet, during the 8 month period of active COVID threat in Queensland, where he was precluded from face to face contact with his immediate family members just across the QLD/NSW Border, and unable to access the community or his regular supported events.

The very idea that the current Government idealises cutting 50% from extremely disabled person’s funding to access essential community supports such as basic shopping, dental visits, doctors and others day-to-day needs, alongside access to leisure opportunities any other non-disabled adult would freely access is reprehensible and frankly, abhorrent.

My brother’s experience during COVID demonstrated the impact of reduced community access and disruption to routine. When access to community participation was limited, his psychosocial impairments were exacerbated. This is an important point for the committee to understand: community access is not a lifestyle extra for people with complex psychosocial disability. It is often a protective factor. It supports regulation, routine, identity, connection, mental health, and reduced reliance on crisis systems. If the Bill enables reductions to community participation or capacity-building supports, the likely outcome is not “savings”; it is deterioration and increased downstream cost. It is sideways shifting of the cost burden to other systems, that are already overwhelmed and unavailable. Section 34A departs from the NDIS’s core principle of assessing support needs individually, rather than relying on arbitrary financial constraints.

Reduced access to therapy and community participation supports, simply increases a person with disability’s reliance on unpaid informal supports, and the risk that costs will be shifted onto families, health systems, mental health crisis services, homelessness services, and hospitals. My family is an example of exactly this risk.

In my case – I cannot take on further burden for my Brother’s care, at a time when I have young children with their own significant competing needs for their mental health, physical and neurodevelopmental impairments. It simply isn’t a possibility. We don’t have the space, we could not ensure his safety through 24/7 support, I couldn’t ensure the safety of my own children, because it is not fair that his need for care and safety would be taking away from their ability to learn, grow develop and feel safe in their own home. This is without considering my own burden of medical issues and disability-related impairments.

ACTION REQUESTED: That proposed section 34A should be withdrawn from the Bill entirely.

If Parliament nevertheless proceeds with section 34A, the Bill must explicitly amend section 209(8) of the NDIS Act to classify any determination made under section 34A as a Category A NDIS Rule, ensuring states and territories must agree before such a reduction instrument can take effect.

(2) Unscheduled Plan Reviews

I am extremely concerned regarding the extension to the decision timeframe for the NDIA to respond to a valid reassessment request changes from 21 days to 90 days (Item 19 – Subsection 48(3)). The government says this is designed to reduce unnecessary plan inflation and stop providers or intermediaries initiating plan increases without clear evidence of changed need. I agree that unnecessary draining of plans through misuse is a problem, however there are many completely valid reasons for needing a reassessment, including that the plan was grossly underfunded at onset – this can be seen in AAT/ART case data, where the Tribunal Agree with the participants concerns, including underfunding.

In my own family’s case - since my mother’s recent passing, I am now my brother’s sole plan nominee. This means that one layer of informal support and risk management has already been lost for him. My Mother’s death was rapid, but it wasn’t unexpected as she had a terminal condition – this is not the case for the deaths or incapacitation of all informal carers (consider: motor vehicle accidents, medical incidents such as stroke or heart

Submission 918

attack). The system cannot safely assume that family support remains unchanged, unlimited, or able to absorb reductions in formal support. In many cases, were SIL with stable supports not in place prior to my Mother’s passing, this would be an emergency need for plan review with significant funding uptick required.

ACTION REQUESTED: That proposed Item 19 – Subsection 48(3) should RETAIN a 21 day Timeframe, with allowances made for non-urgent requests (as the 21 day timeframe often isn’t met currently regardless).

(3) Plan Revocation Powers

Next, referring to: Proposed new subsection 30(1) will provide that the CEO may revoke a person’s status as a participant if the CEO is satisfied that: the CEO has made reasonable attempts to contact the participant to request information; or reports under section 36 or section 50 and the participant is not contactable, or; the participant’s plan has been suspended under proposed section 40A because the participant is not contactable (see Item 83) for at least 90 days.

There is a very significant safeguarding risk if plans can be suspended, reduced, or delayed because of contact difficulties, administrative barriers, or narrow interpretations of functional capacity. It is important to note that in my example, participants such as my Brother, with psychosocial disability may experience periods of disengagement, overwhelm, paranoia, or difficulty responding to administrative communication, and that suspending or revoking plans in such contexts may expose people to neglect, homelessness, hospitalisation, institutionalisation, mental health crisis, and suicide risk. In my brother’s case, any system that relies on perfect administrative responsiveness from a person with psychosocial disability, or their extremely overwhelmed, scared and frustrated nominees, without strong safeguards and family-informed (but not family-dependant – please note the difference there!) context, would be incredibly unsafe.

ACTION REQUESTED: That proposed subsection 30(1) should NOT read ‘REVOKE’ – it should only relate to suspensions, with 90 days notice of intent to do so, and preferably, with secondary warnings at 60 days and 30 days, via multiple contact methods and nominees, wherever possible.

(4) Automated Decision-making

I want to draw attention to the significant and severe risks of Automated Decision-Making in the NDIS as this Bill introduces provisions that authorise the use of automated administrative action and decision-making, extending to the exercise of discretion and evaluative judgement. Whilst I acknowledge that automation can be beneficial for straightforward and low-risk administrative processes, there are serious concerns regarding the breadth of legal authority created by these broad reaching provisions.

Automated systems, if used in critical decision points, pose significant risks to fairness and accuracy. Specifically, there are major concerns if automation is applied to:

Functional capacity assessments
Eligibility decisions
Reassessment determinations
Support needs determination and funding allocation Disability assessment is a complex process that requires nuanced clinical judgement, along with a thorough understanding of a person’s context, communication needs, trauma history, culture, and the way their presentation may fluctuate over time. Automated systems risk undermining these critical elements.

What is being proposed is akin to Robodebt – a mistake I thought the Government would wish to avoid.

I have significant concerns in particular around the provisions in the Bill which state that a failure to comply with safeguards does not affect the legal validity of automated decisions. This approach fundamentally undermines procedural fairness and removes important avenues for accountability. A very current case study - the Integrated Assessment Tool (IAT) within the aged care Support at Home program - should provide as a cautionary example to this government, because evidence from the aged care sector indicates that such systems (Automation, using AI) tend to overlook nuanced needs, underestimate carer strain, and result in participants receiving lower support classifications than required. Moreover, transparency is limited, and the mechanisms for review are difficult for participants and their families to navigate.

Submission 918

There is a genuine concern that if structured assessment scores become the dominant mechanism for determining participant budgets in the NDIS, similar risks may arise. Within the NDIS context, snapshot assessments may fail to adequately capture the realities of fluctuating disability, communication needs, environmental barriers, cumulative impairments, and the complexities of psychosocial disability, as in the case of my brother, For my own children, the day-to-day context, other supports offered, the environmental context

When professional judgement and allied health evidence are constrained by algorithmic or classification-based systems, there is a substantial risk that complex needs will be under-recognised and underfunded.

ACTION REQUESTED: Recommendations to Safeguard Participants including

A prohibition on fully automated eligibility or funding decisions in particular
Strict limits on the use of automation in decision-making
Mandatory rights to a human review of any and all automated decisions
Transparency regarding the algorithms and rules used in decision-making
Independent oversight mechanisms to ensure accountability and ensure minimisation of harm to participants, particularly those without access to advocacy or other safeguards.

(5) Functional Capacity Definition and Determination

Put simply, disability does not exist in a vacuum. One condition impacts on others. For example, a person with both intellectual disability and autism may require constant routines, specific communication supports, and assistance with daily living skills. If these needs are only assessed in isolation, the combined impact on the person’s functional capacity and participation in the community is underestimated. Similarly, someone with a physical disability and a mental health condition may experience increased anxiety or behavioural challenges when physical supports are reduced, demonstrating how one condition can directly influence the experience and management of the other.

In my brother’s case, his psychosocial disability cannot be understood without considering his communication challenges, the need for structured environments, and the critical role of informal supports. These aspects are not merely background context—they are fundamental to his safety, wellbeing, and ability to function day-to day. Attempting to separate or compartmentalise these interlinked factors leads to an artificial and incomplete assessment of support needs, ultimately risking inadequate funding and poorer outcomes.

A further real-life risk is that the proposed approach to functional capacity may fail to capture the true nature of complex disability. I have grave concerns that the Bill’s proposed definition assesses “what a person can do without assistance, assistive technology, modifications, and, as far as possible, without environmental or personal circumstances”. For my brother, this would produce an artificial picture of function. His disability cannot be understood separately from his environment, his support relationships, his mental health, his routines, his SIL setting, his community access, and the capacity of his remaining informal support network. These are not irrelevant background details; they are central to whether he remains safe and stable.

ACTION REQUESTED: That proposed new subsection 9B(1) should be removed with maintenance of the current definition of Functional Capacity.

Summary from Personal Perspective:

Many of the items proposed within The Bill also appears to increase reliance on unpaid carers at the exact time many carers are already at breaking point. This has been an ongoing increase over the Scheme’s existence and it does not recognise the significant complexity of current life for many participants and their nominees.

I am not only just my brother’s nominee; I am also the parent of three young children with additional needs who need constant care and attention, as well as many therapeutic appointments, and supported opportunities to practice their learning. I myself suffer from medical conditions and hidden disabilities (for which I don’t receive support through NDIS). And yet the current government, through Thriving Kids, believes this is just a ‘me’ issue, and access to some playgroups parenting workshops (Fun fact: I was already doing these) will mean that my kids are magically functioning as ‘neurotypical with no concerns.

Submission 918

If any variety of formal NDIS supports are reduced, delayed, narrowed, or made harder to access, the gap does not disappear. It lands on me. Squarely. That means increased unpaid labour, reduced workforce participation, increased stress, reduced capacity to parent my own children, and increased risk of carer burnout. It is strikingly obviously that the government appears to have justified cost-cutting reform, that will disproportionately increase reliance on unpaid carers, particularly women carers. This creates a perverse outcome. A reform intended to make the Scheme “sustainable” may instead make families, carers, and participants less sustainable.

If I am required to absorb additional unpaid care, advocacy, crisis management, service coordination, and emotional labour, my ability to remain in the workforce and continue operating my business is directly affected. This has broader economic consequences because I employ 5 other people. Many other families of disabled folk are in the same boat – we have small businesses, we employ other people, because we need flexibility in the working hours and a small ability to control those demands – because the other demands being thrown at us as carer, are unforeseeable, uncontrollable and unrelenting. And those demands are only being made worse by shortsighted, under-evaluated and to be blunt, ableist, policy such as this current bill.

This Bill also undermines the stated purpose of the NDIS, which was to support disabled people’s participation while also allowing families and carers to participate socially and economically. Sure, overall Australian fiscal policy reform is needed, undoubtedly, but to place extra burden on those who are already over-burdened, and providing informal supports beyond a reasonable level is frankly absurd and disgraceful. To continue to increase the burden on the disabled population and their carers, rather than to increase tax of the top 1%, or to tax our exports appropriately, is bizarre. Remember, if this bill passes, it is simply forcing people out of work, closing small businesses, increasing reliance on social security income and simply moving the money around the playbook.

Additionally, I must ask if there has been any thought into what happens if all of those over-burdened informal carers suddenly experience increased adverse health events, and need to place those disabled persons into the care of the state, simply to survive? What does that cost the system? Or is the expectation of the government that they will simply be exited, or institutionalised, become homeless or pass away? Where is the care for our most vulnerable.

There is also a risk that broad funding reduction powers could destabilise high-support participants without proper individual assessment. I am extremely concerned about powers that may allow percentage reductions to funding components without individual reassessment of reasonable and necessary support needs, participant safety, functional impact. It appears that these reductions can be made on the whim of the Minister, who of course has the bottom line firmly in his sight of balancing the budget. What a preposterous idea, to give the control and oversight of payments, and of funding amounts, to the very minister in charge of the portfolio. What happened to the embedded use of independent advice and bodies such as IHACPA? They should surely have involvement in the fees being set for NDIS service provision, so that we remain with a choice of providers and control in how we use the funding allocated.

For someone such as my severely disabled older Brother, who requires 24/7 supervision and support, this could be catastrophic. Small funding reductions can affect staffing ratios, continuity, safe community access, transport, behaviour support, therapeutic input, and the viability of accommodation arrangements. This runs the very real risk of homelessness, as we informal carers are unable to take on that level of care safely or effectively. So we won’t be able to. This then risks life, and has high likelihood of adverse outcomes such as death. Actual death on the hands of the government whose decisions seem to care not about the cost of a life, but the cost of a submarine.

For high-support participants, funding is not discretionary. It is often what stands between stability and crisis.

In summary, and in practical terms, the real-time risks for my family include:

deterioration in my brother’s psychosocial wellbeing if supports, routines, or community access are reduced;
increased risk of crisis presentations, hospitalisation, or accommodation breakdown;

Submission 918

reduced safety if 24/7 support arrangements are destabilised;
loss of community participation, leading to isolation and functional decline;
increased administrative burden on me as sole nominee;
increased unpaid care demands following the death of my mother;
reduced capacity for me to work, and sustain my business, employing other taxpayers.
reduced capacity to parent my own disabled children, increasing their lifelong support needs
increased stress and vulnerability for my own children with additional needs;
greater likelihood that costs are shifted from the NDIS to families, hospitals, mental health services and crisis systems, in addition to the forms of income support, and crisis services relevant to them.

The key message I would put strongly is this:

For my family, the risk is immediate and foreseeable. If this Bill reduces, delays, narrows, or destabilises formal supports, my brother’s needs will not reduce. The work and risk will simply be transferred to me as his unpaid carer and nominee, while I am already caring for three children with additional needs and maintaining employment and employing others. This is not sustainability. It is cost-shifting, and it places disabled people and carers at risk. His care would be transferred to the state, which would be far more costly than paying for the services in full that already support him.

I am happy to be contacted for further information should it be considered useful. I hope my submission helps to elaborate on the very real risks of these reforms in current format.

Again, I reiterate my earlier message:

I urge the government to redact the proposed bill, consult with those impacted, properly, prior to being presented in a more appropriate manner.