Supports carers and protects their wellbeing (DRO advocacy)

Submission 306

Submission on the National Disability Insurance Scheme

Amendment (Securing the NDIS for Future Generations)

Bill 2026

May 2026

Submission 306

About Carers Tasmania

Carers Tasmania is the Peak Body representing the more than 87,000 informal carers (hereafter carers) in the state.

Carers Tasmania’s vision is for an Australia that values and supports carers.

Our mission is to work to improve the health, wellbeing, resilience and financial security of carers and to ensure that caring is a shared responsibility of family, community, and government.

Our values drive everything we think, say, and do.

• Carers first – we listen to what carers need, commit to their desired action plan, and deliver results that matter most to carers

• Care in all we do – we care for our work, about each other, about Tasmania’s family and friend carers, and the bigger world we all share

• Integrity always – we are transparent, act ethically, own when things don’t go to plan and do what we say we will

• Quality every time – we don’t accept ‘good enough’ because carers deserve our very best every time

• Speed that matters – we are agile and don’t put off what can be done today. These values represent how we engage with and serve carers, how we work with each other, and our commitment to the broader community. Carers Tasmania encourages partnership with governments and health and community sectors to enhance service provision and improve conditions for family or friend carers through policy development, research and advocacy.

We acknowledge and support people of all genders, sexualities, cultural beliefs, and abilities and understand that carers in Tasmania, whilst sharing the common theme of caring for a family member or friend, are diverse individuals with varying beliefs, experiences, and identities. We value and respect the diversity of carers, their lived and living experiences, and recognise that carers are the experts in their own lives.

Carers Tasmania has offices in Moonah, Launceston and Burnie.

Please direct any enquiries about this response to:

Dr Samantha Fox

Chief Executive Officer

Phone: (03) 6144 3700

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Contents

1. Background…………………………………………………………………………………………………….. 4
2. Introduction …………………………………………………………………………………………………….. 5
3. Key concerns with the Bill …………………………………………………………………………………. 6
4. Recommendations …………………………………………………………………………………………. 11
5. Conclusion ……………………………………………………………………………………………………. 12

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1. Background Carers Tasmania is the Peak Body representing the more than 87,000 informal carers within the state.

A carer is a person who provides unpaid care and support to a family member, or friend, with disability, mental ill health, a chronic or life-limiting condition, alcohol or other drug dependence, or who is frail or aged. Informal kinship carers who care for a child under the age of 18, because the parent is unable to, are also recognised as carers. Carers are predominantly family members, but may also be friends, neighbours, or colleagues. Informal carers are not to be confused with paid support workers who are often called ‘carers’, with the difference being that support workers are fully employed and remunerated with all the benefits of employment. On the contrary, family and friend carers perform their caring duties without remuneration, other than minimal carer payments and allowances from the Australian Government.

In addition to representing carers through the Peak Body activities, Carers Tasmania provides support to carers living in Tasmania through its service delivery arm, Care2Serve. The Australian Government Carer Gateway program is delivered through Care2Serve in Tasmania, as are other supports and services, such as the Tasmanian Government’s Home and Community Care program.

Anyone may become a carer at any time. The likelihood of this occurring in Tasmania is high, with estimates showing that one in six people living in Tasmania is a carer. This proportion is higher than the national average. The Australian Bureau of Statistics Survey of Disability, Ageing and Carers (SDAC) revealed that there were 80,100 carers in Tasmania in 2018.1 By 2022, this figure had increased to more than 87,000.2

The Carer Gateway program provides a range of free services and supports for carers which are designed to build resilience and knowledge, increase wellbeing, improve quality of life, and sustain carers to effectively continue their caring roles. The available supports include the provision of information, advice and referrals, holistic identification of carer strengths and needs through a carer support planning process, professional counselling, peer support, and coaching which aims to support carers in achieving specific goals.

Care2Serve, through the Carer Gateway, has capacity to fund certain instances of planned, practical support services such as in-home respite, personal care, domestic assistance, and meal preparation. Care2Serve may also fund items such as laptops to assist carers who are studying or trying to enter the workforce. Care2Serve also coordinates the provision of emergency support during instances where a carer may be unable to provide the care that they usually do, resulting from unexpected illness or injury of the carer.

1 Australian Bureau of Statistics (2021). 44300DO006_2018 Disability, Ageing and Carers, Australia: Tasmania,

2018. Australian Bureau of Statistics. (abs.gov.au) 2 Australian Bureau of Statistics. (2022). Disability, Ageing and Carers, Australia: Summary of Findings, 2022. Australian Bureau of Statistics (abs.gov.au)

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2. Introduction Carers Tasmania welcomes the opportunity to provide this submission to the Senate

Community Affairs Legislation Committee Inquiry into the National Disability Insurance

Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.3 While it is important to uphold the long-term sustainability and integrity of the NDIS, this must not be pursued through measures that reduce access to essential supports, increase avoidable risk or isolation, or shift greater responsibilities onto carers.

Many carers support participants of the National Disability Insurance Scheme (NDIS) by providing daily living support, emotional support, regulation assistance, coordinating services, managing risk, planning ahead, advocating in planning and review processes, and filling gaps when funded supports are delayed, reduced, or unavailable. Despite the challenges, for many people, the NDIS has been life changing. Changes to the NDIS have direct consequences not only for participants, but also for carers’ health, financial security and capacity to continue caring safely and sustainably.

This submission is informed by concerns raised in Tasmania and nationally, that current NDIS reform proposals and budget savings will shift additional costs and responsibilities to carers, who are already impacted financially, physically, mentally, and socially by their caring roles. While safeguards against fraud and a clearer legislative framework are important, the proposed approach as defined within the Amendment Bill risks narrowing access to supports, reducing participant numbers, and limiting review rights before alternative systems are operational and accessible. This is likely to result in people with disability being left without timely assistance and carers without the support they need to sustain their roles.

Carers Tasmania is particularly concerned that the Bill may undermine Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)4 if reforms result in reduced access to necessary disability-specific supports, diminished participation in decision-making, and greater reliance on unpaid care to meet essential daily living needs. The NDIS must protect safety, autonomy, inclusion and family life, and savings must not be achieved by transferring risks and supports from government systems and formal services, onto informal family and friend carers.

The consultation timeframe for these reforms was inadequate to support meaningful input from people with disability, carers and representative organisations. Given the complexity and significance of the proposed reforms, it is essential that people with disability, their carers, and the broader sector have adequate time to review the proposed reform materials in accessible formats, consider likely impacts, seek advice and contribute informed feedback. Any changes to such fundamental legislative disability supports should be progressed using mechanisms that are accessible, inclusive and grounded in co-design, consistent with Australia’s obligations under the UNCRPD. In our view, the limited timeframe has reduced the capacity of those most affected to participate fully in the process.

3 Parliament of Australia. (2026). National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. https://parlinfo.aph.gov.au/parlInfo/download/legislation/bills/r7487 first reps/toc pdf/26064b01.pdf;fileType=application%2Fpdf 4 United Nations. (2006). Convention on the Rights of Persons with Disabilities. https://www.ohchr.org/en/instruments-mechanisms/instruments/convention-rights-persons-disabilities

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3. Key concerns with the Bill Carers Tasmania is concerned that the Bill’s focus on financial sustainability may reduce the number of people supported by the Scheme without ensuring that suitable and accessible foundational supports are in place. When disability supports are reduced or delayed, risk does not disappear, rather it is absorbed by the person with disability, their carers and family, or it escalates into breakdown of care arrangements, crisis, hospitalisation, increased calls to Carer Gateway providers (who provide only short-term support for carers), homelessness, or contact with emergency systems.

The Bill raises serious safety and wellbeing concerns for both participants and carers. Carers are often the final safeguard when formal services aren’t able to assist. Carers regularly provide support at all hours of the day, including on weekends and holidays, monitor changes in health and behaviour, manage medications and appointments, respond to crises, and protect against neglect, exploitation and unsafe service arrangements. If plan budgets tighten due to the proposed changes, or participants lose access to the Scheme, carers will be expected to undertake an increased amount of complex and intensive work with less formal support. This compounds already high levels of stress, exhaustion, financial strain and psychological distress among carers, while also increasing the likelihood that participants will go without the assistance required to live safely and with dignity. Often, carers are not trained in disability, personal and mental health support, however, are expected to provide these supports safely and effectively.

Findings from the 2024 National Carer Survey demonstrate that carers experience persistently low and declining wellbeing, characterised by poor health, high levels of psychological distress, and substantial social isolation. More than half of carers report significant levels of psychological distress, which is nearly four times the rate in the general population, while average wellbeing scores remain well below national benchmarks. These outcomes are closely linked to the intensity and duration of caring roles, financial stress, limited access to support, and the lack of recognition of carers’ own needs within service systems.5 Therefore, any reductions in available support through the NDIS poses risk not only to people with disability, but also to their carers.

Carers Tasmania is deeply concerned about the Bill’s proposal to limit a participant’s ability to obtain an early plan review (part two – limit unscheduled plan reassessments) when their circumstances change or when a planning decision does not reflect their true level of need. Disability-related needs can change rapidly because of deterioration in health, changes in functional capacity, changes in informal care, loss of housing, family violence, hospital discharge, or provider withdrawal. Without a realistic, accessible pathway to support an early review, people can be left with inadequate supports for extended periods. Carers will often absorb shortfalls themselves so essential care needs don’t go unmet. Denying or delaying an early review therefore creates avoidable harm and is not responsive or person-centred.

The proposed amendments state that a participant will only be able to request a plan reassessment where there has been a significant, ongoing change in their disability-related support needs, driven by either a substantial change in functional capacity or major changes in living, work, or support circumstances. Over recent years, Carers Tasmania have provided numerous letters of support for carers supporting a person requiring an early review due to increased support needs, safety concerns, carer burnout and insufficient plan funding. This

5 Carers NSW. (2025). 2024 National Carer Survey: Summary report. Carers NSW. Available from www.nationalcarersurvey.com.au

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highlights that changes in disability support needs often occur. Maintaining a fair and responsive pathway for early review is essential.

These concerns must be considered through the lens of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD). Australia’s disability supports should promote autonomy, inclusion, participation in decision-making, access to supports required for independent living, and protection from exploitation, violence and abuse. Reforms that reduce access to supports, constrain review rights, or shift responsibility to carers risk undermining those obligations. A scheme designed for future generations must be grounded in human rights and co-designed with people with disability and carers, rather than creating savings by increasing unmet need, unpaid caring demands and disadvantage.

The Bill introduces new sections (Schedule 1 – Part 6, IG, IH, IJ) that may create a legal presumption that parent carers must provide ‘substantial care and support’ to their children and young people with disability. The Bill states that ‘substantial care and support’ includes:

“(a) supervision, personal care, transport, emotional support and behavioural support;

(b) and other assistance with the activities of daily living that regardless of the child’s disability, would reasonably be expected of a parent of a child of a similar age.” 6

This means even when a child needs intensive, highly-specialised, or around the clock support, assistance from a support worker for capacity building, or emotional and behavioural therapeutic support, those needs may be classed as ‘parental responsibility’ as opposed to disability related support needs. It is essential that disability specific support needs are not conflated with ‘parental responsibility’.

Subsection (1J) states that the CEO must not approve the support under that test if the main purpose of the support is to:

“(a) reduce burdens on parental time below what is reasonably expected of a parent.”

This means:

• the NDIS should not fund support just because parenting is time-consuming or exhausting

• if the support is mainly there to reduce the amount of care a parent has to provide, it may be refused.

“(b) improve household efficiency.”

This means:

• support cannot be funded simply because it would make the household run more smoothly or reduce pressure at home.

6 Parliament of Australia. (2026). National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. https://parlinfo.aph.gov.au/parlInfo/download/legislation/bills/r7487_first reps/toc pdf/26064b01.pdf;fileType=application%2Fpdf

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“(c) give effect to a parent’s preference for supports to be provided otherwise than by parental care.”

This means:

• a parent cannot simply say “I would prefer a worker to do this rather than me”
• if the task is considered something a parent is expected to do, that preference alone is not enough for NDIS funding.

Alongside the broader restrictions proposed in the Bill, these provisions risk formalising an increased reliance on parent carers to undertake unmet disability support needs. The earlier concerns identified in this submission, that carers already fill service gaps, respond to crises and sustain unsafe or inadequate arrangements, are reinforced by clauses in the Bill that presume parents are responsible for providing ‘substantial care and support’ and that prohibit funding where the primary purpose is to reduce parental time burden, improve household functioning, or reflect a preference for non-parental care. This may deem parental exhaustion, burnout, impacts on siblings as young carers, and the need for rest and recovery irrelevant, even where the caring role is intensive, needs are specialised, or the current situation is unsustainable. This fails to recognise that parent carers are not an inexhaustible resource, and that protecting the wellbeing, health and sustainability of carers is essential to the safety and rights of both carers and children with disability. Research also shows that the birth or diagnosis of a child with disability can be a contributing factor toward family poverty,7 and increasing demands on parents to provide substantial support impacts their capacity to maintain employment.

Tasmanian carer comments:

“I love my son unconditionally even with all his little quirks, I worry every day of what will happen to him when I fall off the perch, who will care for him as I have done over the years without selfishness.” 8

“I wanted to reach out because I’m really concerned about the recent NDIS changes and how they’re impacting autistic children and their families. As you know, I have 3 children 2 of whom are Autistic, and from my lived experience across three different schools, it’s already clear that schools do not have the resources or capacity to adequately support neurodivergent children.

Adding cuts or restrictions to NDIS supports only increases this gap. I understand that budget savings need to be made somewhere, but the way these changes are being implemented feels like they treat being Autistic as something a child can “grow out of.” That idea is not only inaccurate but harmful, and it risks leaving children and families without the critical early supports they need.” 9

7 Australian Institute of Health and Welfare. (2020). Children with disability in Australia. Canberra: AIHW. https://www.aihw.gov.au/getmedia/a792fd34-61db-4f62-91f8-9aa8e41f8207/cda.pdf.aspx

8 Carers Tasmania. (2023). National Carer Survey Tasmanian Report. 2022-National-Carer-Survey-Tasmanian-

Report.pdf

9 Carers Tasmania. (2025). Carers Tasmania’s submission to the inquiry into the Thriving Kids initiative. https://carerstas.org/wp-content/uploads/2025/10/Carers-Tasmanias-Submission-to-the-Inquiry-into-the-Thriving

Kids-Initiative-2025.pdf

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Item 89, which includes subsection 24(5), is focused on a person needing to undertake available treatments before their disability may be considered as permanent. Although this section does not expressly compel a person to take medication or undergo any particular treatment, by providing that an impairment is not permanent, or likely to be permanent, unless the person has undertaken all appropriate treatment (if any), unless any other treatment is unlikely to materially improve, reverse or alleviate the impact of the impairment, and unless the impairment is likely to persist for the person’s lifetime, it creates a significant risk that decision-makers will expect available treatments to be attempted and shown to be ineffective before permanence of the disability is recognised. This is particularly concerning for people with disability, for whom treatment pathways may be contested, burdensome, inaccessible, unaffordable, or inconsistent with the person’s rights, preferences, and lived experience. This may place pressure on individuals and families to pursue medication, therapy, assessments or other invasive interventions not because they are clinically appropriate or freely chosen, but to prove eligibility for disability support. It also risks shifting substantial financial costs onto carers, who may be required to fund appointments, reports, therapies or trials of treatment to demonstrate that those interventions do not work, even where families do not have the means to meet those costs. Eligibility for essential disability support should not depend on treatment compliance, nor on a family’s capacity to pay to prove the permanence of a person’s disability.

The Bill also includes proposed section 25A, which defines “appropriate treatment” for the purposes of paragraphs 24(5)(a) and 25(1B)(a). Under proposed subsection 25A(1),

“Appropriate treatment means treatment that is evidence-based, can reliably be expected to materially improve, reverse or alleviate the impact of the impairment, and is regularly undertaken or performed in Australia.”

Proposed subsection 25A(2) further provides that a treatment may still be considered “appropriate” even where a person’s individual circumstances limit their access to it, including where barriers arise from financial circumstances or geographical location. People with disability tend to be worse off financially than those without disability,10 and financial challenges are also significant for many carers.11 This change has potential to exacerbate this financial disadvantage.

Section 34A raises significant concerns regarding the erosion of the Scheme’s foundational principle of individualised, needs-based support. The proposed provision legislates that the Minister may reduce funding for specified groups of supports across a class of participants by applying a percentage cut, with this reduction taking effect automatically within affected plans. Whilst this is framed as a mechanism to promote financial sustainability, this approach risks introducing broad, cohort-based reductions that are not informed by individual participant circumstances, functional capacity, or assessed need.

10 Australian Institute of Health and Welfare. (2024). People with disability in Australia: Finances. Retrieved from https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/income-and finance/finances

11 Carers NSW (2025). 2024 National Carer Survey: Summary Report. Carers NSW, North Sydney. Online

available from www.nationalcarersurvey.com.au

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This determination would operate independently of the plan reassessment process, meaning funding levels can be reduced without transparent, case-by-case review or adequate procedural safeguards. This may result in participants receiving funding that is insufficient to meet the cost of supports deemed reasonable and necessary, undermining both participant and carer outcomes and safety.

These reductions are likely to increase reliance on informal supports provided by carers, compounding existing pressures and risks of carer burnout. Carers Tasmania recommends that any mechanism enabling funding adjustments at scale be accompanied by clear safeguards, including requirements for impact assessment, transparency in decision-making, and opportunities for participant review, to ensure that financial sustainability measures do not come at the expense of equitable, person-centred support.

Social and community supports are among the support types proposed to be reduced first. These cuts could have serious consequences for participants, carers and the broader service system. Social supports are not optional extras. Rather, they often play a critical role in reducing isolation, maintaining routine, building confidence and capacity, supporting community participation, and helping to protect mental health and wellbeing. For some participants, these supports also contribute to safety by providing regular oversight, reducing vulnerability, and helping to identify emerging concerns before they escalate.

Reducing social support may increase isolation and community disengagement. This may also limit access to basic and essential supports, such as medical appointments, grocery shopping, or haircuts. In many cases, the impact is absorbed by their carers, who may be required to provide more supervision, emotional support, transport, and practical assistance, often at significant cost to their own wellbeing. These pressures can also lead to poorer health and mental health outcomes, and increased use of emergency and crisis services, thereby shifting costs rather than reducing them.

Tasmanian carers are concerned about these proposed funding and eligibility cuts, adding additional layers of stress to their lives.

Tasmanian carer comment:

“I’m so concerned about the changes.

We have very minimal support as it is, and we have no family we can rely on for any help and we never get any reprieve, I know he is our child but when we had our other two children who do not have a disability, our families would always want to take them out, but when you have a child with a disability, it feels like nobody wants to spend time with you or your child, it’s extremely isolating.

Sorry for the rant, it’s just so sad that we all fight to survive as it is. I hold down a full time job plus make time for all of his therapies with no extra support, I do this because he needs them and if the support is taken away I don’t know what his future will look like. The therapy is needed and he is starting to learn so many new skills that I just don’t know how to teach in a way that he learns, although I’m learning it’s a lot to understand.”

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4. Recommendations Carers Tasmania recommends that the Bill be amended to ensure that efforts to improve the sustainability and integrity of the NDIS do not reduce access to essential disability supports, increase avoidable risk, or shift greater responsibility onto carers. In particular, we recommend the following:

5. Amend the Bill so that NDIS sustainability measures do not reduce access to essential disability-specific supports or shift unmet need onto carers and families.

6. Retain a fair and realistic pathway for participants to seek an early plan reassessment when circumstances change, including where there is deterioration in health, changes in functional capacity, loss of housing, family violence, provider withdrawal, hospital discharge, or changes in informal care arrangements.

7. Remove or substantially amend the proposed parental responsibility provisions in Schedule 1, Part 6, subsections (1G), (1H) and (1J) to ensure children with disability are not denied supports because disability-related needs are inappropriately characterised as ordinary parenting responsibilities.

8. Ensure that parent carer wellbeing, sustainability, rest and recovery are recognised as legitimate considerations to sustain their caring safely and basic human rights, in determining whether supports are reasonable and necessary for children and young people with disability.

9. Amend item 89 and proposed subsection 24(5) to ensure that permanence is not reliant on a person, or their family, undertaking all available treatments, medications or interventions, and that eligibility is not denied because a treatment is inappropriate, refused on valid grounds, inaccessible, unaffordable, or inconsistent with the person’s rights, preferences and lived experience.

10. Do not narrow eligibility, reduce participant supports, or constrain review rights unless accessible, appropriate and adequately funded foundational supports are demonstrably in place and able to meet need.

11. Uphold Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities in the implementation of any NDIS reforms, including protections for autonomy, participation, safety, independent living and freedom from exploitation, violence and abuse.

12. Amend proposed section 34A so that any power to reduce funding for classes of supports or participants is subject to clear safeguards, including transparency, published impact assessment, and access to review, and does not permit broad reductions that override individualised assessment of reasonable and necessary supports.

13. Provide sufficient consultation time and accessible materials for people with disability, carers and representative organisations to participate meaningfully in the design and implementation of major NDIS legislative reforms.

14. Commit to ongoing co-design with people with disability, carers, families and representative bodies to monitor the impacts of reform and prevent increased reliance on unpaid care.

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5. Conclusion Carers Tasmania supports an NDIS that is sustainable, transparent and effective. However, reforms must not achieve savings by transferring risk, cost and care burden to people with disability and their carers. A sustainable NDIS must remain rights-based, responsive to changing needs, and be designed in a way that protects both participants and their carers. Carers Tasmania is committed to working constructively with government to ensure reform approaches protect the integrity and longevity of the Scheme without compromising the rights, safety or wellbeing of participants or the people who care for them. We trust that our feedback and recommendations will be thoughtfully considered.

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