Submission 565 — Lived Experience Carers (Psychosocial) — NDIS Future Generations Bill

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Senate Submission

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Senate Community Affairs Legislation Committee

28 May 2026

We are two mothers, each with an adult daughter with a psychosocial disability and a NDIS plan. Given our significant lived experience and broader professional expertise, we are making this submission to ensure the Senate is aware of the impacts of the proposed amendments on both our daughters and us as unpaid carers.

Our ask is that the Bill does not proceed in its current form until:

1. There is a specific and detailed impact assessment prior to resetting budgets for social and community participation and capacity building daily activity (SCCP) for participants with psychosocial disability. This should as a minimum include

• a random stratified real-world audit (not a desktop review) to ascertain whether the funding is being used for discretionary social activities or structured psychosocial rehabilitation activities such as supported community access, skills development and therapeutic routine
• the impact on family and other informal carers

Our experience is that these services are foundational to recovery and reducing isolation and the proposed alternatives are unrealistic.

2. The APTOS principles are updated and operationalised to explicitly recognise psychosocial rehabilitation as a structured, therapeutic intervention that cannot be substituted by informal caring or community supports.

3. The definition of functional capacity is revised to allow inclusion of relevant contextual information and incorporates the personal circumstances of carers and family in a way that is trauma informed and empowering (part 1, schedule 1).

4. Family and carers are added to the list of people who can request an unscheduled reassessment where they have been providing support but may not be a plan nominee (part 2, schedule 1).

5. The Bill is amended to recognise that there may be a multi-step causal chain between impairment and the need for support, given the broad impact of psychosocial disability (part 3, schedule 1).

6. The Bill is amended so that when the NDIS is notified that a participant has been hospitalised for significant periods of time, unused funds can be rolled over at least for the next quarterly funding period (part 5, schedule 1).

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

7. The term ‘material’ risk is removed and changed to a risk of harm or significant distress. This section concerns us the most as informal carers, where the CEO is required to consider the ‘desirability of supporting, maintaining and strengthening informal supports and community networks in preference to replacing those supports with funded supports’, except where there is a material risk of harm or the informal supports are unsustainable is revised. Additional criteria to be included should be:

• the participant’s right to independence from family members and informal networks
• whether the support constitutes a therapeutic or clinical intervention, including psychosocial rehabilitation
• the cultural, relational, or personal circumstances of the participant that may make reliance on particular informal supports inappropriate or harmful; and
• the family or carer has indicated, or there is reasonable evidence to suggest, that providing the support affects their own health, wellbeing, or capacity to participate in employment or social life (part 6, schedule 1).

8. The Bill is amended to remove the exclusion of financial and geographical circumstances from the permanence assessment, replacing these with consideration of availability, access and clinically safe treatment and the recommendations of a treating clinician with specialist expertise in the person’s condition (part 8, schedule 1).

Why are we making a submission?

We are not writing as peak bodies, academics, or advocates. We are writing as people who fill gaps. Our caring responsibilities are frequently intensive, relational, unpredictable and emotionally demanding, extending beyond practical assistance to include ongoing emotional support, crisis management, advocacy and navigation of complex service systems. Unlike many other forms of caring, mental health caring is shaped by fluctuating needs, uncertainty, the pervasive impact of stigma and the absorption of the consequences when the system fails. We write together because the issues we face are similar, and because our shared experience gives us confidence that what we describe is not idiosyncratic to our families but is structural.

We support NDIS reform that is financially sustainable and equitable. We also see opportunities to improve value for government and the outcomes for our adult children. However, reform must not be rushed and must remain grounded in human rights principles. As families and carers, we are deeply concerned by reforms that reduce support for people with psychosocial disability before appropriate community alternatives and foundational supports are funded and operational. For our daughters, their NDIS plans and the supports they fund are not optional extras. They are the difference between connection and isolation, stability and crisis, recovery and repeated hospitalisation.

This submission was prepared with the assistance of an AI tool to support drafting, and document formatting. The source documents, instructions, and lived experience underpinning the submission are entirely our own. We have reviewed all content and take full responsibility for the views expressed. Our daughters have given their consent for us to use our experiences in our carer advocacy roles.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

We also want to state something that rarely appears in policy submissions but is directly relevant to why AI assistance was both necessary and appropriate in the context of caring for an adult child with serious and persistent psychosocial disability. This is not a role with boundaries. It does not stop at 5pm, does not pause for weekends, and does not accommodate the kind of sustained, concentrated effort that researching and drafting a submission of this complexity would ordinarily require. The fifteen-day submission window the Government allowed for the Bill and the Explanatory Memorandum, over 400 pages combined, was not a realistic window at all without assistance. We used AI to help us participate in a process that was not designed with people like us in mind. We make no apology for that. If anything, it illustrates the central argument of this submission: the system consistently asks the most stretched people to absorb the most.

Lack of consideration of carer rights We are increasingly concerned by policy settings that do not recognise our own human rights and treat unpaid family carers as an assumed substitute for formal support. A rights-based system must recognise that unpaid caring has limits and should never be invisibly relied upon to absorb gaps created by explicit withdrawal of services. (See discussion on subsection 34 (1K))

Lack of psychosocial rehabilitation and poor interfaces with mental health system The original intent of NDIS has never adequately met the needs of people with psychosocial disability, particularly in areas such as psychosocial rehabilitation and the interface with the mental health system. Effective community based psychosocial rehabilitation with appropriate clinical input has never been an option for our children. Psychosocial recovery is not a short-term treatment episode for our daughters but requires a sustained process of building capacity for them to live in the community despite the ongoing impact of mental illness.

The division between ‘treatment’ (handled by the health system) and ‘psychosocial recovery’ (handled by the NDIS) is unclear and often contested. Neither system takes full responsibility, creating silos and making recovery harder to manage. The APTOS Mental Health Table needs to be reviewed and put into practice more effectively. Our experience is that the health system steps back once someone has a NDIS plan, while the NDIS is reducing funding for capacity building when quick results or savings aren’t evident. For us this has this has resulted in many gaps and challenges navigating complex systems, sometimes putting our daughters at risk

We ask that the APTOS principles are updated and operationalised to explicitly recognise psychosocial rehabilitation as a structured, therapeutic intervention that cannot be substituted by informal caring or community supports.

Proposed reduction in social and community participation and capacity building The most immediate threat this Bill poses to our families and children is the proposed 50% reduction in social and community participation and capacity building daily activity budgets (SCCP). The Explanatory Memorandum acknowledges that participants with psychosocial disability commit 30% of their total plan budgets to social and community participation, the highest of any disability group. Our experience is

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

that these services are foundational to recovery and reducing isolation, and at times are not separate from support for activities of daily living (eg: supporting community access to the supermarket).

For both our families, social and community participation is not a discretionary add-on. It is the mechanism through which our children reduce their social isolation, have the confidence to ‘be in the community’ and build structured routines that assist with their recovery. Also, our children cannot simply switch to group activities. The individual relationship with a known, trusted worker who understands their history, triggers, and recovery patterns is not an optional premium. It is what makes community participation, connection and belonging possible at all.

Indiscriminate reductions in NDIS plans will likely increase crisis risk, emergency department presentations, and hospital admissions and shift the cost to the already stretched mental health system, along with placing our own health and wellbeing under increasing stress as we are required to increase our unpaid care and support to ensure their safety and wellbeing. There is nothing ‘informal’ about the provision of this support- it is necessary and essential, yet unfunded.

When support is removed from the funded system, it does not disappear. It lands on us. Informally. Without recognition. Without compensation. The Explanatory Memorandum acknowledges the impact and increased informal caring responsibilities for women, describing it as a matter for monitoring. Rather than use resources to monitor us, we would prefer these resources supported a more detailed impact assessment prior to any cuts being made.

We request that there is a specific and detailed impact assessment prior to resetting SCCP budgets for participants with psychosocial disability. This should as a minimum include

• a random stratified real-world audit (not a desk top review) to ascertain whether the funding is being used for discretionary social activities or structured psychosocial rehabilitation activities such as supported community access, skills development and therapeutic routine

• a survey of the likely impact on family and other informal carers

In addition, prior to any budget reset based on plan underspending, that there is opportunity for participants to explain the reasons for any underspend (e.g. days spent in hospital, relapses of mental illness)

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

Part 1 — Defining Functional We recommend that the definition of functional capacity is Capacity (s 9B) revised to allow inclusion of relevant contextual information and incorporates the personal circumstances of carers and The Bill inserts a new definition of family in a way that is trauma informed and empowering. ‘functional capacity’ (s 9B). A person’s functional capacity is The functional capacity of our daughters is shaped by their assessed as their ability to context, relationships, safety, past trauma, housing stability, undertake an activity: social connections and our relationships with them.

(a) without assistance from other Confining assessment to a person’s intrinsic functional ability, people, assistive technology or ‘to avoid reliance on personal and external factors that may vary modifications; and between individuals and are not attributable to the impairment’ is likely to continue to cause systematic discrimination between (b) in a context that excludes, as those with psychosocial disability who have low access rates to far as possible, the impact of the scheme and other disability types where functional capacity environmental and personal may be more stable. circumstances. As carers, we have been required to present ‘the worst version’ of This definition applies to all our adult children to justify support, despite a strengths-based current and future participants. recovery oriented model. We have been asked to explicitly NDIS Rules (Category A, requiring document all the ways we are unable to cope in our carer state/territory agreement) will statements. later set thresholds and assessment methods. The EM We experience shame and stigma in explaining or justifying states the intent is to confine support requirements and this definition risks deepening that assessment to a person’s intrinsic experience. Any new definition needs to incorporate the functional ability, ‘to avoid personal circumstances of carers and family in a way that is reliance on personal and external trauma informed and empowering. factors that may vary between Note: we have not commented on the functional capacity individuals and are not assessment process as we are aware other organisations will attributable to the impairment’ raise these concerns, however, we have deep concerns about (EM, Part 1). the validity of the I-CAN tool given the challenges of an Commencement: Seven days after assessment process with assessors with potentially no Royal Assent. psychosocial disability expertise, unknown to our daughters, in the context of fluctuation of functional capacity and mental illnesses that make self-reporting unreliable and impairments underreported.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

Part 2 — Limiting Unscheduled We recommend that family and carers be added to the list ofPlan Reassessments (s 48A) people who can request an unscheduled reassessment Unscheduled reassessments can where they have been providing support but may not be a only be requested by: the plan nominee. participant, their plan nominee, or a child representative. Family and carers are an essential part of the support Reassessments are now only infrastructure that enables daily functioning, community permitted where there is: participation, crisis prevention, and continuity of care. They can experience significant and sometimes sudden changes in • a significant and ongoing change circumstances. These may include declining physical or mental in functional capacity related to an health, ageing, injury, financial hardship, employment changes, eligible impairment; or housing instability, caring for other family members, relationship • an unanticipated, significant and breakdown, bereavement, or increased responsibilities for other ongoing change in living, children, grandchildren, or elderly parents. Many carers are education, work, or informal already balancing multiple caring roles while trying to sustain support arrangements. workforce participation to ensure financial and emotional wellbeing. The decision window for the NDIA to respond extends from 21 to 90 Under this amendment, a participant may continue to have the days. Support coordinators and same formal impairment, but the practical reality of their plan managers can no longer support environment may have fundamentally changed. A request reassessments on behalf support arrangement that was previously sustainable can rapidly of participants. become unsafe or unworkable when the unpaid caring capacity they rely so heavily on reduces or collapses. Without the abilityCommencement: Seven days after to seek timely reassessment in response to these broader lifeRoyal Assent. changes, families may be left carrying impossible levels of responsibility without adequate formal support.

Part 3 — Strengthening the Link We recommend that the Bill is amended to recognise that Between Impairment and Need there may be a multi-step causal chain between impairment for Support (s 34(1)(aa)) and the need for support, given the broad impact of psychosocial disability. Supports are only fundable where the need arises ‘directly’ from an This test has coherent logic for physical impairments with impairment for which the discrete, linear causal chains. It does not have coherent logic for participant met eligibility. The Bill psychosocial disability, where the impairment produces support specifies the impairment must be needs through cascading, multi-domain, and mutually

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

‘the direct and immediate source, reinforcing consequences that cannot be reduced to a single cause or origin of the need for immediate causal step without clinical distortion. support’ — not merely a The provision as drafted will produce systematic, predictable,contributory cause. and clinically unjustifiable exclusions for this cohort. The This responds to recent judicial support gaps it creates will be absorbed by informal carers — interpretation which had primarily women — without recognition or compensation. broadened the causal link required. This recommendation does not remove the direct-link requirement or open the NDIS to unlimited funding of any Commencement: Seven days after support requirements a person with psychosocial disability Royal Assent. experiences. It ensures that the direct-link test is applied with accuracy to a group whose impairment is characterised by breadth of impact — and that the cost of inadequate support does not fall on informal carers who have no legislative standing in the framework that creates the gap.

Part 5 — Plan Renewal: We recommend that when the NDIS is notified that a Legislated End Dates, No participant has been hospitalised for significant periods of Carryover (s 50A) time, unused funds can be rolled over at least for the next quarterly funding period. All old framework plans will have a legislated end date. On that date, People with psychosocial disability have highly variable plan the plan automatically renews for utilisation particularly where periods of acute illness, 12 months by operation of law — hospitalisation, or crisis prevent engagement with funded no CEO decision required. The supports for weeks at a time — not because the supports are renewed plan replicates the unnecessary, but because the person is unwell. previous plan’s content and Combined with the rigidity of quarterly funding periods, a funding amounts (subject to legislated end date may add to the pressure on family and carers ministerial determination who lose the flexibility required to provide additional support reductions), but: when required. • unspent funds from the previous For families and carers, this creates substantial additionalplan are not carried over; and pressure and uncertainty. When formal supports cannot flex • one-off funding (e.g. capital responsively around periods of relapse or instability, unpaid items) is not replicated. carers become the default safety net. Families are often required to step in suddenly to provide increased supervision and support.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

Commencement: 1 February The previous carryover buffer allowed families like ours to make 2027. up for lost ground during recovery.

Part 6 — Reasonable and This is the provision that concerns us most as informal Necessary Supports, Including carers. We recommend that the term ‘material’ risk is Formal Carer Expectations (s removed and changed to a risk of harm or significant distress. 34(1G)–(1K)) Additional criteria to be included in Part 6 are: ● the participant’s right to independence from family New subsections tighten and members and informal networks codify what the NDIA must ● whether the support constitutes a therapeutic or consider in determining clinical intervention, including psychosocial reasonable and necessary rehabilitation, that requires specialist skills or a non- supports. Key provisions include: family therapeutic relationship and therefore cannot • s 34(1K): the CEO must consider be adequately provided by informal supports the ‘desirability of supporting, regardless of their availability or sustainability; maintaining and strengthening ● the cultural, relational, or personal circumstances of informal supports and community the participant that may make reliance on particular networks in preference to informal supports inappropriate or harmful; and replacing those supports with ● the family or carer has indicated, or there is funded supports’, except where reasonable evidence to suggest, that providing the there is a material risk of harm or support affects their own health, wellbeing, or the informal supports are capacity to participate in employment or social life. unsustainable.

• s 34(1G) new: consideration of Read plainly, this could be a legislative instruction to minimise whether a support would be ‘more funded supports when carers are potentially available in a appropriately provided or funded participant’s life. It provides a framework for reducing funded by another service system’. supports on the basis that informal support and families/carers are available and can cover what the scheme does not. Commencement: 1 February 2027 for new entrants; existing The test of ‘material risk of harm’ or ‘unsustainability’ is a very participants when reassessed. high bar and will place carers and families at risk. It is a crisis- oriented threshold, and we are very familiar with a crisis driven mental health system. We do not want to replicate this in the disability system.

Many informal carers and family are already operating at or beyond capacity providing a 24-hour safety net for their children.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

In addition, the ‘desirability of strengthening informal supports’ provision codifies our labour as a planning assumption. The question of what evidence will be required to demonstrate ‘unsustainability’ of our caring roles is undefined. That ambiguity is not a technicality — it is the threshold our children’s supported funding will turn on.

As mothers, we are aware that this is a ‘gendered’ impact. We are aware that this has been litigated in other forums.

The current framework relies heavily on unpaid relational infrastructure provided by families and carers, while simultaneously under-recognising carer expertise, underfunding carer supports, limiting meaningful participation through restrictive privacy and consent practices, and failing to establish shared accountability across systems.

Without stronger safeguards and a more integrated, rights-based approach, the likely outcomes are increased carer burnout, family breakdown, escalating crisis presentations, preventable hospitalisation, homelessness, workforce withdrawal, and poorer long-term recovery outcomes for people with psychosocial disability.

Families and carers are often the only constant source of support across fragmented systems. When that unpaid support becomes overwhelmed or unsustainable, the consequences do not disappear — they re-emerge later as higher-intensity crises requiring significantly greater intervention and cost to health, disability, housing and emergency systems.

The APTOS table assumes collaboration between the NDIS and mental health systems, but it does not establish enforceable shared accountability, guaranteed coordination mechanisms, or clear escalation pathways when systems fail. As a result, when services dispute responsibility, are unavailable, operate in silos, or fail to coordinate effectively, families become the default safety net and the operational burden of holding fragmented systems together is transferred onto unpaid carers and families.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

The episodic nature of mental illness further intensifies this pressure. During periods of relapse, disengagement, hospitalisation risk, or service withdrawal, families frequently absorb sudden increases in care without corresponding increases in formal supports.

Part 8 — Tightening the We recommend that Part 8 is amended to remove the Permanence Test: ‘All exclusion of financial and geographical circumstances from Appropriate Treatment’ (s 25A) the permanence assessment, replacing these with consideration of availability, access and clinically safe An impairment is not ‘permanent’ treatment and the recommendations of a treating clinician for eligibility unless: with specialist expertise in the person’s condition. (a) the person has undertaken all Why: The current exclusion of financial and geographic appropriate treatment for the circumstances is incompatible with the CRPD Article 25 right to impairment; health services without discrimination, and with the lived reality (b) no other treatment is likely to of people with psychosocial disability on income support in materially improve, reverse or under-served communities. alleviate the impact; and In addition, all eligible psychosocial disability participants are (c) the impairment is likely to likely to be on the Disability Support Pension — a circumstance persist for the person’s lifetime. that is itself a direct consequence that demonstrates the impact of their disability in their overall lives and one that structurally’Appropriate treatment’ (s 25A) limits access to the treatments the permanence test assumesmeans treatment that is evidence- they have exhausted. The test was not designed with this based, regularly undertaken in population in mind and its consequences are predictable.Australia, and can reliably be expected to improve, reverse or For psychosocial disability, this requirement has no clinically alleviate the impairment. defensible answer. Psychiatric treatment is characterised by Critically: significant variation in response, contested and limited evidence bases, and variation in clinical judgement that further treatment • A person’s financial and may (or may not) be indicated — none of which the testgeographical circumstances ‘are accommodates. not relevant’ in considering whether all appropriate treatment The barriers to treatment are structural and not personal or has been undertaken (EM, Part 8; s individual including: 25A).

• financial (DSP income does not cover psychiatric co- • NDIS Rules (yet to be made) may payments, gap fees, travel costs, or ongoing therapy specify circumstances in which a costs person is taken to have undergone

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Proposed NDIS Amendment Potential impacts on families and carers of adults with psychosocial disability

all appropriate treatment — - geographical (in regional and rural areas specialist including for psychosocial psychiatric services are unavailable or carry waiting lists disability. measured in years

• unacceptable (for many, the experience of restrictive and Commencement: 1 January 2028. coercive practices within the mental health system has shaped a rational and clinically recognised reluctance to re-engage)

There is also conflation and nuance between the concepts of exhausting all appropriate treatment and the benefits of psychosocial rehabilitation and recovery. The APTOS Mental Health principles assign ongoing psychosocial recovery supports to the NDIS but the permanence test collapses that distinction by requiring treatment exhaustion before the NDIS’s own domain of responsibility can be accessed. This is the precise reason why only about a quarter of all applications to the NDIS are successful.

It is likely that further tightening the permanence test will further restrict access.

Closing Statement

Reform that:

• reduce SCCP and other supports before alternatives are in place, that formalises informal caring as a planning assumption, • subjects episodic conditions and functional capacity assessments to eligibility frameworks designed for linear impairments, • proceed without adequate consultation

is not sustainable reform. It is a risk transfer. The people least positioned to absorb that risk are the people this Bill most affects including psychosocial participants and their family and carers.

The NDIS must be financially sustainable. We accept that. What we do not accept is that the cost of sustainability should fall disproportionately on a cohort whose conditions are misunderstood by the legislation, whose carers are being legislatively positioned as the default replacement for funded supports, and whose eligibility is about to be assessed against a permanence test that was never designed for them.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 565

Signatories

Submitter 1 — Name: Meredith Coote

Location: NSW

Contact:

Publication consent: I consent to this submission being published with my name but without my contact details.

Submitter 2 — Name: Bernie Mullin

Location: NSW

Contact:

Publication consent: I consent to this submission being published with my name but without my contact details.

References

Applied Principles and Tables of Support (APTOS) to Determine the Responsibilities of the NDIS and Other Service Systems. (2015). Council of Australian Governments.

Department of Health, Disability and Ageing. (2026). National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026: Explanatory Memorandum. Australian Government.

Department of Health, Disability and Ageing. (2026). NDIS Reforms Impact Analysis. Australian Government.

Department of Health, Disability and Ageing. (2026). NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026: Fact Sheet. Australian Government.

Justice and Equity Centre. (2026). Explainer: What are the proposed changes to the NDIS Act?

United Nations. (2006). Convention on the Rights of Persons with Disabilities, opened for signature 30 March 2007, 2515 UNTS 3 (entered into force 3 May 2008), art 25.