Submission 376

Introduction

Carers are central to the lives of many NDIS participants and to the operation of the Scheme itself. We acknowledge that not all people living with disability receive support or would identify as having a ‘carer’. However, current data from the Australian Bureau of Statistics (ABS) indicates that approximately 75% of the 3.2 million people with disability in Australia who needed assistance received it from informal supports². Carers provide an estimated 2.2 billion hours of care annually, valued at approximately $77.9 billion per year, which far exceeds formal care system capacity if replaced by paid services.³ The sustainability of the NDIS is therefore intrinsically linked to the sustainability and wellbeing of unpaid carers.

People living with disability who needed assistance were most likely to receive informal support with communication, mobility and reading or writing tasks. Carers often provide significant and wide-ranging support from nutrition and meal preparation to financial administration, to service navigation and NDIS coordination.

Recent Carers NSW National Carer Survey data indicates that 47.3% of respondents are caring for someone with an NDIS plan, while a further 16.9% are supporting someone who requires NDIS assistance but does not currently receive it.⁴ This highlights the extent to which carers are engaged with, and impacted by, the NDIS both directly and indirectly. While many carers report being involved in NDIS planning and service delivery processes, a substantial proportion also report that their own needs are not actively assessed or addressed, and that they are not consistently provided with adequate information to support their caring role. This suggests a gap between carer involvement in practice and meaningful carer inclusion within the Scheme.

Carers supporting someone receiving NDIS services reported significantly poorer wellbeing outcomes than other carers, including:

• 39.8% reported very high psychological distress
• 44.8% reported being highly socially isolated
• 56.4% rated their health as poor Among carers supporting someone with an NDIS plan:
• 62.9% reported they were not asked about their own needs as a carer
• 40.6% were not provided with the information needed for their caring role
• 67.0% said the NDIS did not enable them to properly rest and recharge
• 60.5% reported difficulty organising services
• 44.3% experienced long waiting periods to access services (Carers NSW, 2024 National Carer Survey)

² Ibid ³ Carers NSW estimate based on Deloitte Access Economics (2020), The economic value of informal care in Australia in 2020, Carers Australia ⁴ Carers NSW (2024) 2024 National Carer Survey, available online at: https://www.carersnsw.org.au/about-us/our-research/carer-survey

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

Submission 376

Critically, carers are often required to fill significant gaps in support, without consultation about their ability or willingness to do so, when the NDIS is unable to fully meet a participant’s needs. Reforms that reduce funded supports, restrict access criteria or increase administrative complexity do not eliminate care needs, they transfer them, without recognition or compensation to people living with disability, their family members and friends.

A scheme that achieves cost saving and efficiency by relying heavily on unpaid carers is not sustainable, it is subsided by carers’ health, employment and wellbeing, which results in long term costs to address carer needs.

Volume and Nature of Community Response

Carers NSW endorses the submissions made to this inquiry by Carers Australia and the National Carer Network and the positions advanced by carer and disability peak bodies and networks in their submissions. Collectively, these submissions highlight significant concerns regarding the Bill’s impact on carers and people living with disability, including risk of cost-shifting, reduced access to supports, limited review rights and insufficient safeguards for carer capacity and sustainability.

Carers NSW also notes significant volume of submissions received by the Committee from individuals. The breadth and consistency of community concern across these submissions reinforces our view that the Bill, in its current form, should not proceed as it requires fundamental reconsideration prior to any further progression.

Carers NSW Position

We support the long-term sustainability and integrity of the NDIS.

However, Carers NSW calls on the Committee to recommend that the Bill not be passed in its current form.

We recognise that some of the measures in the Bill reflect recommendations from the Independent Review of the NDIS, the Disability Royal Commission and earlier consultation processes. However, a number of provisions are new and have not been subject to adequate public consultation and the Bill as a whole has been referred to this Committee with a submission window of just 14 days (14–29 May 2026).

This timeframe is incompatible with genuine participation by the communities most affected including carers, participants, disability advocacy organisations, and service providers. Many carers themselves face disability-related access barriers, digital exclusion, literacy and language barriers, and time constraints that make two-week consultation windows inaccessible.

Recommendation:

1. The Bill should not be passed in its current form. The Committee should recommend an extended and accessible consultation process, and the Bill must be reintroduced, subject to this taking place.

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

Submission 376

Carers NSW primary concerns relating to carers

Carers NSW highlights the following provisions as of particular concern to carers in New South Wales.

Increased Administration and Civil Penalties for Carers

The Bill significantly expands the compliance obligations and legal exposure of plan nominees, which is frequently performed by unpaid family carers. New provisions require nominees to proactively notify the agency of events or changes arising from illness, hospitalisation, caring intensity, housing instability, family crisis or other personal circumstances.

Many family carers acting as nominees will not have legal training, will not have been adequately informed of these obligations and may not have access to legal or advocacy support. The combination of expansion duties, strict compliance expectations and civil penalties creates compounding legal and administrative risk for carers already undertaking high intensity unpaid caring responsibilities.

The record-keeping requirements and associated debt recovery provisions substantially increase administrative burden. Where records are not maintained, claims may become debts owed to the Agency. For carers managing claims on behalf of participants with complex needs, the risk of inadvertent non-compliance due to disability-related barriers, cognitive overload, carer burnout, crisis situations, or limited administrative capacity is both real and foreseeable.

Recommendation:

2. Amend the nominee compliance provisions to: a. ensure unpaid carers are not subject to disproportionate legal or administrative burden. b. Include accessible guidance, c. safeguards against inadvertent non-compliance, and d. create protections where non-compliance arises from genuine caring circumstances rather than intentional misuse.

Risk of cost-shifting from the NDIS to Carers

Several provisions in the Bill will, in practice, will likely result in care needs being transferred from the NDIS to unpaid carers. This includes the tightening of the link between eligible impairments and funded supports (Parts 3 and 9), the restrictions on unspent fund rollover, the removal of one-off funding items from renewed plans, and the narrowing of reasonable and necessary support criteria.

Where the NDIS determines that a support should be provided through the health, education, aged care, or another service system, but that support is not available in

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

Submission 376

practice, unpaid carers frequently become the default gap-fillers. This dynamic is already well-documented and is inconsistent with the Carer Recognition Act 2010 and the National Carer Strategy 2024–2034, both of which recognise carers’ contributions and the need to avoid assumptions of unlimited carer availability.

The term ‘informal support’ appears throughout the Bill in provisions that limit funded supports by reference to what informal networks can provide yet it is never defined. Without a definition that requires informal support to be willing, capable and sustainable, the Bill risks treating carer support as unlimited and unconditional.

Recommendation:

3. The Bill should define ‘informal supports’ to include only supports that are willing, capable, and sustainable, and must not assume unpaid carers as default providers of supports where other service systems fail to provide required supports. Any reliance on informal care should require explicit carer consultation, consent and alignment with the Carer Recognition Act 2010 and the National Carer Strategy 2024–2034.

4. Treatment requirements considered ‘Appropriate’ regardless of Circumstances Part 8 of the Bill required participants to undertake all ‘appropriate’ treatment before supports may be considered eligible, while excluding personal and financial circumstances from this assessment. In practice. These risks disadvantaging participants in rural, regional and remote areas where specialist services are limited, unavailable or require significant travel. It also risks further disadvantaging people who already experience significant financial stress as a result of their disability or caring roles and may not be able to afford public or private health services.

Where participants cannot access recommended treatment due to geographic, financial or systemic barriers, carers often absorb the resulting gaps in support. This may increase caring responsibilities for unpaid carers who are already disproportionately affected by service shortages in regional communities.

Recommendation:

4. Amend Part 3 to require consideration of the actual availability and accessibility of treatment services, including geographic access and financial capacity. Participants should not lose access to funded supports where recommended treatment is unavailable, inaccessible or delayed due to systemic service gaps.

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

Submission 376

Risk of Complex Disability Needs being treated as Parental Responsibility

New subsections 34 (1H) - (1K) redefine the boundary between the NDIS-funded supports and parental responsibility for children with disability. While Carers NSW recognises that the NDIS should not fund ordinary parental responsibilities, the provisions as drafted risk incorrectly classifying disability-related supports as parental care.

The definition of ‘parental care’ is broad and includes supervision, behavioural support, personal care, transport, emotional support and daily living assistance. For children with complex or high-support needs, these categories may overlap significantly with disability support needs. Without clear safeguards, planners and providers may treat essential disability supports as parental responsibilities, even where the support need arises directly from the child’s disability and extends well beyond what would reasonably be expected of a parent.

This risk is particularly acute where inclusive or disability accessible alternatives – such as childcare, afterschool care or holiday programs are unavailable. In these circumstances, families may be left with no practical alternative but to provide the care themselves, increasing pressure on unpaid carers to provide this care, even if they are required to exit the workforce to do so.

Recommendation:

5. Amend subsections 34(1H)-(1K) to require: a. consideration of the actual availability of inclusive and accessible services before a support is characterised as parental responsibility. b. decisions to be based on the functional impact of the child’s disability and include carer sustainability as an express consideration where parental care is relied upon in place of funded support.

Functional Capacity Assessment and Exclusion of Environmental and Personal Circumstances

Proposed section 9B defines functional capacity by reference to a person’s ability to undertake activities without assistance from others, assistive technology or environmental modifications, assessed in a way that excludes, as far as possible, environmental and personal circumstances.

Carers NSW is concerned this approach may not accurately reflect a participant’s real-world support needs. Informal caring relationships are often central to how daily support is provided and excluding this context risks underestimating support requirements in practice.

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

Submission 376

The proposed reassessment framework does not adequately account for foreseeable or time-limited changes in informal care capacity. Events such as carer illness, planned medical treatment, respite, burnout, or changes in caring responsibilities can have an immediate impact on available support. Without recognition of these changes, participants may experience delays in having plans adjusted to reflect changed needs.

New section 48A further limits reassessment requests to the participant, their plan nominee or a child’s representative, which may reduce timely access to reassessment where care arrangements change and support needs increase.

Recommendations:

• Amend proposed section 9B to ensure functional capacity assessments take into account the participant’s actual living environment, including the role, availability, and limits of informal carer support.
• Amend section 48A to enable timely reassessment where there is a primary informal carer who is demonstrably involved in day-to-day support.
• Ensure the reassessment framework explicitly recognises foreseeable or time-limited changes in informal care capacity as a trigger for reassessment.

Expansion of Computer-Assisted Decision-Making and Complex Family Care

Schedule 3 of the Bill authorises the use of computer programs to support decision-making, including decisions involving discretion, evaluative judgment or formation of a state of mind [59B (4)]. Explanatory material indicates that computer-assisted decision making will be used within the new planning framework, at least for aspects such as calculations and plan development.

Carers NSW is concerned that, without appropriate safeguards, increased reliance on automated systems may reduce the extent to which complex and contextual factors are meaningfully considered in planning decisions. Carer capacity and sustainability are inherently relational and dynamic, including factors such as household care arrangements, fluctuating carer health and the presence of multiple caring responsibilities within a single family. These factors may not be fully captured through structured data inputs alone, creating a risk that automated outputs do not accurately reflect a participant’s actual support needs at the time of planning.

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

Submission 376

The Bill introduces amended section 17A(3), which requires the Agency to recognise and respect the role of families and carers. While this is a positive principle, its effective implementation depends on how it is operationalised within automated and hybrid decision-making systems. Without clear requirements for human oversight, there is a risk that such principles are not adequately reflected in algorithmically generated or assisted decisions.

Meaningful human review and the ability to override automated outputs where appropriate are essential safeguards for any computer-assisted decision-making system. The Commonwealth Ombudsman has also recently launched an inquiry into the Integrated Assessment Tool (IAT) in aged care following concerns about its implementation and the inability of assessors to override outcomes, even where automated decisions are not reflective of need. This presents an important opportunity to learn for the design of safeguards within the NDIS context.

Recommendations:

9. Require that any automated or computer-assisted decision that reduces funded supports or determines access to supports is subject to meaningful human review.
10. Require that assessment of carer capacity, informal support arrangements and carer sustainability remain the responsibility of human decision maker and are not determined solely through automated processes.
11. Ensure transparency by publishing the key criteria used in automated decision-making systems and providing accessible

Merits Review and Individual Rights

The Bill excludes merits review for support determination changes on the basis that these decisions reflect broad legislative or policy settings rather than individual administrative decisions. Carers NSW is concerned that, in practice, these determinations have direct and significant effects on individual participants and their support arrangements. For example, reductions in funded supports (including those referenced in the explanatory material) can materially alter a participant’s care arrangements, with flow-on impacts for carers who structure their work and daily responsibilities around existing funding levels.

Removing access to merits review for such decisions limits an individual’s ability to seek independent scrutiny of how broad policy settings are applied in their specific circumstances. This is of particular concern where combined reforms including

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

Submission 376

restrictions on unspent funds and changes to funding structures may compound the impact of reduced supports without an accessible individual remedy.

Recommendation:

12. Restore merits review for support determination decisions where the application of those decisions results in a reduction in an individual participant’s funded support.

Conclusion

Carers NSW urges the Committee to recommend that the Bill not be passed in its current form. The compressed consultation process has limited meaningful engagement with carers and other communities most affected by the proposed reforms, particularly those who rely on the NDIS and informal care arrangements in their daily lives.

A sustainable NDIS depends on recognising the central role that unpaid carers play in supporting people with disability and ensuring that policy settings do not unintentionally shift additional responsibilities onto them without adequate safeguards. Where system design relies on increased carer contribution in the absence of formal supports, there is a foreseeable risk of increased pressure on carers’ health, wellbeing, and long-term capacity to sustain care arrangements. These impacts are not peripheral to the system; they directly affect its stability and effectiveness.

The provisions identified in this submission, as well as the submissions of other members of the National Carer Network, raise concerns about whether the proposed reforms adequately reflect the practical realities of care within households and communities. In Carers NSW’s view, reform of this scale is most effective when developed in genuine partnership with participants, carers, and the broader disability community. Such an approach supports more durable policy outcomes and ensures that the lived experience of caring is appropriately reflected in system design and implementation.

Carers NSW remains committed to constructive engagement and would welcome the opportunity to provide further evidence to the Committee.