Protecting unpaid carers from increased responsibilities (Individual advocacy)

Submission 400

Response to the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

(Securing the NDIS for Future

About Carers SA

Carers SA is the peak advocacy body for Carers in South Australia. Raising the voice of Carers, and advocating for recognition of their rights, wellbeing and needs, is central to our work. We advocate across government, health and social services, business and communities to promote appropriate and meaningful support for Carers.

Carers SA works to ensure that the needs, wishes, values and perspectives of Carers inform government decision making, policy development and service design, with the aim of improving the lives and wellbeing of Carers across South Australia.

Carers SA is both an advocacy peak body and a service provider for Carers through the federal Carer Gateway program and a range of state funded carer programs. This dual role gives us a unique opportunity to understand the needs and experiences of Carers, identify service gaps and improvements, and engage with diverse Carers across South Australia. It also positions Carers SA to raise awareness of issues affecting Carers and to elevate their voices in policy and decision making.

Our advocacy seeks to enable Carers to:

• Have their voices heard on issues that matter to them,

• Defend and safeguard their rights,

• Be at the table as partners in decision making that affects them and the people they care for,

• Contribute to shared planning and problem solving to improve the lives of Carers. Carers SA recognises an imperative to respond to the NDIS Amendment (Securing the NDIS for future Generations) Bill 2026 as a legislative direction that will have far reaching burdens on people with disability, their family and unpaid carers into the future.

Carers SA adds it’s support to the position and recommendations made by the national, state and territory Carers peak bodies.

Carers SA calls for the Bill to be amended to ensure that no eligibility, planning, reassessment, support classification, funding cap or Ministerial reduction power may operate in a way that creates unsafe unmet need, coerces unwanted treatment, removes essential disability-specific supports, undermines informed consent, narrows access before foundational supports are operational, or transfers responsibility for funded disability support onto unpaid carers and families.

Submission 400

In doing so Carers SA identifies the following critical imperatives and systemic risks identified in the proposed Bill.

1. Stop the shift: Protections against the transfer of life-long disability care from government to families and unpaid carers

Such protection must include insertion of a “no cost-shift to family and unpaid carers” safeguard that requires every NDIS funding reduction, eligibility change or support cap to include an assessment of whether unmet need will be transferred to family, unpaid carers, hospitals, housing, child protection, schools or crisis services. This is necessary because the Government’s own impact analysis says the preferred reform option will reduce participant numbers and some NDIS supports.

The Bill risks reducing funded supports while assuming families and unpaid carers will absorb unmet need without recognition, funding or safeguards. If eligibility narrows, reassessment access is restricted, or support categories are reduced before foundational supports are operational, care responsibilities will inevitably transfer to those people who are already overburdened and themselves at risk including aging parents, grandparents, siblings and other unpaid carers, many of whom are living with poor health, disability and poor wellbeing themselves.

This does not eliminate need. It merely transfers the financial and emotional cost from government budgets to unpaid households and overstretched public systems. Cuts that destabilise care and support arrangements create greater long-term financial pressure elsewhere. It will further burden other systems and services to take on the responsibility when family and unpaid carers can no longer manage including schools, hospitals and other health services, emergency departments, mental health services, homelessness services, care gateway services, respite services, crisis care services etc.

Australia’s unpaid carers already contribute an estimated economic value exceeding $77 billion annually through unpaid care work. The NDIS cannot be built upon invisible labour and carer exhaustion. A legislative assumption of endless care by unpaid carers ignores the realities of the stresses and burdens on carers. Evidence consistently shows that unpaid care responsibilities fall disproportionately on mothers, older women, ageing parents and female siblings.

Recommendation 1:

Carers SA calls for

• a legislated “no unreasonable cost-shifting” safeguard
• mandatory family and unpaid carer impact assessments for all NDIS reforms
• protection against reducing supports where unpaid care is already unsustainable
• recognition of family and unpaid carer sustainability as a formal planning consideration. The sustainability of the NDIS cannot be achieved by transferring disability support obligations onto unpaid carers, exhausted families and crisis systems.

Carers SA Response to the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 (2

Submission 400

2. Preserve the role of parents: Protect parents and people with disability from ‘ordinary parenting’ being applied to life-long disability support

The recommendation on parental responsibility should also require decision-makers to distinguish ordinary parenting from disability-specific support, including supervision, behaviour support, communication support, personal care, transport, sleep disruption, safety monitoring and therapy carryover. The NDIS cannot redefine lifelong disability support as ordinary parenting in order to reduce public responsibility for disability care.

The NDIS was established because disability support could no longer depend solely on family capacity, charity or institutionalised systems that failed to protect people with disabilities and their rights for autonomy, choice and control. If the Bill reintroduces family responsibility as a substitute for funded supports, it risks undermining the core principle of the Scheme itself.

More, it fails to recognise the right of adults with disability to live independently, participate in the community and avoid unnecessary dependence on family care. The NDIS was created to replace inequitable reliance on family sacrifice with rights-based disability support. Expanding ‘ordinary parenting’ beyond childhood risks reversing that reform.

A legislative assumption of endless family care ignores the realities of ageing carers and creates foreseeable risks of neglect, crisis and institutionalisation. The NDIS cannot redefine lifelong disability support as ordinary parenting as a means to reduce public responsibility for disability care.

Ordinary parental responsibilities typically include nurturing, supervision during childhood, education support, emotional support, transitional assistance into adulthood. However, Australian law and social policy do not generally expect parents to provide

• lifelong personal care
• health care procedures
• medical coordination
• 24-hour supervision and care
• ongoing behavioural management
• intensive physical care
• transport dependency
• communication support
• crisis management
• unpaid disability workforce functions throughout adulthood. Where disability-related support needs to continue into adult life, these are ordinarily recognised as disability support needs, not ordinary parental obligations.

Recommendation 2:

Carers SA calls for the Bill to include

• explicitly definition for the scope and limitations of “ordinary parenting” and

• distinguish clearly between parenting and disability support and not conflate its intent parenting to include or mean life-long disability support

• prohibit reliance on indefinite unpaid parental care for adults

• require assessment of carer sustainability and consent Carers SA Response to the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 (3

Submission 400

• recognise that disability-related support needs do not become ordinary merely because families have historically provided them.

And the inclusion of the statements

• For the avoidance of doubt, disability-related support needs required by an adult participant must not be characterised as ordinary parental responsibility solely because such supports have historically been provided by family members or informal carers.

And

• In determining reasonable parental responsibility, the CEO must have regard to the participant’s right to independence, autonomy, community participation and freedom from unreasonable reliance on unpaid care.

A legislative framework that normalises lifelong parental care for adult with disability, imposes obligations on families and carers that are not expected of other Australians, creating systemic inequality and discrimination.

3. Reject the fraud-focused narrative: Reject Reforms that treat disability support as a fraud problem rather than a systemic market failure problem.

Public messaging surrounding the Bill increasingly frames participants as responsible for excessive NDIS growth through exaggerated need or misuse.

This disproportionate framing of participants as the source of ‘fraud’ fails to address and overtly underemphasises the widespread structural market problems within the NDIS ecosystem. This lays the burden of blame on the those who rely on the NDIS to support their rights to quality of life, freedoms and choices.

Contrary to government rhetoric, there is limited publicly available evidence that large-scale NDIS cost escalation is primarily driven by people with disability exaggerating impairment or fraudulently overstating need. In contrast systemic provider overcharging, pricing inflation, excessive hourly rates, excessive costs for NDIS cost loaded equipment, weak regulation and administrative inefficiency as major drivers of cost escalation.

The ACCC and NDIS Taskforce reported by the Minister Treasury Portfolio has publicly acknowledged provider price gouging.

Far from securing the NDIS for future generations, without addressing these structural failings, price gouging and NDIS loading that is currently rife across the system, the future of people with disabilities, their families and Carers, will continue to support the consequences.

This matters. A fraud-focused narrative from government in forming the basis for NDIS reform outlines in the Bill further stigmatises and marginalises people with disability, creates an adversarial NDIS assessment process and undermines trust in the Scheme.

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Submission 400

Recommendation 3:

Carers SA calls for

• stronger provider regulation before participant restrictions
• transparent reporting on provider fraud versus participant fraud
• caps on unreasonable pricing practices
• independent market oversight
• mainstream purchasing flexibility for low-risk assistive items. Government must address the structural drivers of NDIS cost escalation, not disproportionately burden people with disability through suspicion-based reform.

4. At What Cost: Protection of human rights, autonomy and informed consent

The proposed amendments risk creating a system where people may feel pressured to undergo extensive treatments, therapies or interventions to prove permanence or eligibility. The Charter of Rights People with Disability protects bodily autonomy; informed consent; freedom from coercive treatment; equal recognition before the law and dignity and personal choice.

This requires amendment of eligibility treatment provisions. Proposed subsection 24(5) should state that a person does not have to undergo every treatment, medication or intervention to prove permanence. A treatment should not be required where it is unsafe, clinically inappropriate, unaffordable, unavailable, culturally unsafe, inconsistent with informed consent, or contrary to the person’s rights and preferences. The Charter of Rights People with Disability Article 25 requires health care on the basis of free and informed consent.

The burden of cost of such treatments and assessments will fall to people with disabilities, their families and unpaid carers who already are financially stressed and have reduced financial security directly related to their caring role often meaning they are not able to access employment.

The repeated trauma of forcing people with disabilities into an exhaustive cycle of treatment and assessment, unaffordable therapies that are inaccessible on public waiting lists, having to comply with unwanted interventions and the obligation and burden of having to repeatedly prove impairment through costly reassessment cycles amounts to an inexcusable government failing to protect their human rights and apply coercive and traumatising pressures as the cost of receiving support.

To address this issue requires strengthening of section 34A safeguards. Proposed powers to reduce funding for classes of supports should not override individual reasonable and necessary assessments. Any reduction should require public modelling, human rights impact assessment, carer impact assessment, individual exemption pathways, merits review, and explicit protection for people with complex health, behavioural, communication, psychosocial or 24/7 supervision needs.

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Submission 400

Recommendation 4:

Carers SA calls for inclusion of safeguards that ensure

• people are not required to undertake all possible treatment,
• refusal of treatment cannot automatically undermine eligibility,
• permanence cannot depend on pursuing inappropriate or inaccessible interventions,
• informed consent and personal choice must be protected. Access to disability support must never depend on coerced treatment, financial capacity or the erosion of the person’s human rights or personal autonomy.

5. Protect rights for review: Preserve and maintain rights for independent review and individualised supports and human decision-making

The Bill introduces mechanisms that may restrict early reassessments, reduce review access, broaden Ministerial powers to reduce classes of supports and prioritise standardised cost control over individualised need. This risks undermining one of the central principles of the NDIS, that of individualised support based on functional impact and lived circumstances. Without responsive review pathways, participants may deteriorate before support can be adjusted. Rigid reassessment barriers fail to account for such things, rapid changes in condition including degeneration, deterioration due to acute and chronic health conditions including mental health, hospitalisation, crisis escalation, family deterioration, housing loss, family and unpaid carer health deterioration and more.

Broad powers to reduce funding categories may create service rationing practices without transparent scrutiny, assessment or individual rights protections. The Bill’s automated administrative decision-making powers should be limited to low-risk administrative tasks, not eligibility, budgets, support reductions or reassessment refusals. Participants must have reasons, evidence relied on, human review and access to merits review.

Recommendation 5:

Carers SA calls for amendments to ensure:

• guaranteed access to timely reassessment
• independent merits review protections
• limits on Ministerial powers to reduce support classes
• provision of crisis escalation
• human review of automated decisions. Efficiency cannot come at the expense of fairness, accountability and individual rights.

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Submission 400

6. No reduction in supports until foundational supports are proven, funded and accessible

The changes to the NDIS will be reliant on and assume foundational supports will absorb people excluded from, or receiving less support through, the NDIS. Many if not most foundational support systems either do not yet exist, are inconsistently funded, vary from state to state, lack workforce capacity, are inaccessible in regional areas and/or remain poorly defined.

The NDIS reforms must require that foundational supports are operational before NDIS reductions occur. Government cannot remove existing supports based on future promises that are not yet funded, operational or accessible. Foundational supports are proposed as a replacement for some reduced NDIS supports. It is noted that $4 billion of the $10 billion foundational supports envelope is committed to Thriving Kids and is “not a replacement” for adult social and community participation reductions.

Reducing NDIS access before alternative systems are operational will create unacceptable service gaps and delays in intervention, increased crisis demands on other services and offset unanticipated costs on other schemes such as the Carer Gateway. Added to this it will significantly increase the risk of family breakdown and unpaid carer burnout.

Recommendation 6:

Carers SA calls for amendments that

• Include a legislated “foundational supports first” principle

• Require independent verification that replacement systems are operational before any reduction in participant access

• Ensure transparent funding agreements with states and territories

• Provide for enforceable service standards

• Embed rural and regional equity guarantees Government cannot remove existing supports based on future promises that are not yet funded, operational or accessible.

Carers SA calls on the federal government to ensure that legislative amendments and structural changes to the NDIS ensure that

• sustainability of the NDIS does not come at the expense of the rights of people with disabilities and the rights of families and unpaid carers

• reform must address structural inefficiency and foundational supports before restricting participants

• families and unpaid carers cannot become the hidden funding mechanism of the NDIS

Scheme,

• the legislation reflects and protects disability support as a human rights obligation, not discretionary welfare.

May 2026

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