Submission 2082

Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Individual submission — mother and carer of an NDIS participant 28 May 2026

Submission opposing the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

About me and my son

My name is . I am the mother and primary carer of my son, a 32-year- old man who has been an NDIS participant since the Scheme’s inception. He has an unbalanced chromosomal translocation (chromosomes 9 and 11), which has resulted in global developmental delay, Cerebral Palsy, Autism Spectrum Disorder, and complex physical and medical needs. He is non-verbal, doubly incontinent, and requires a wheelchair for mobility and 24-hour care for every aspect of his daily life.

I write as his mother, advocate, and carer. I strongly oppose this Bill and urge the Committee to recommend it not proceed without fundamental revision and genuine, extended consultation. The NDIS is not a policy concept for our family — it is something very real and practical in our daily lives. Without it, my son would be stuck at home with no support, his most basic personal needs unmet. With it, he has trained support workers to assist with every aspect of his personal care, he can swim, attend Sailability, access exercise physiology, and get out into the community. Most significantly, my son now lives in his own space on our property with supports—something we never thought possible. He has gained a level of independence in his life that we once could only dream of. That is what good NDIS funding achieves. That is what this Bill puts at risk.

My son’s goals

These are his own goals, as documented in his current NDIS plan and participant statement. They are what this Bill puts at risk:

• To maintain and improve my quality of life in all areas of daily living whilst remaining in my own home.
• To really explore my ability to communicate so I can have maximum choice and control over my life and day to day affairs.
• To maintain and improve my physical health and well-being so I can participate to the best of my ability in all areas of my life.
• To maintain family relationships and connections, including travel to and accommodation in South Australia to visit extended family.
• To improve and maintain my emotional regulation and coping skills.
• To increase and develop my social skills, build friendships outside of family, and be an active member of my community.
• I need my mum to be my mum.

Submission 2082

Every one of these goals is directly threatened by this Bill. I address each relevant part below.

The consultation process is wholly inadequate

This 109-page Bill was introduced to Parliament on 14 May 2026 with a submission deadline of 29 May — approximately two weeks. I am a carer with limited time and resources. This is not genuine consultation; it is a formality. The disability community deserves a real opportunity to engage, and I urge the Committee to recommend the Bill not proceed until a thorough, properly resourced consultation process has been completed with people with disability, their families, and the sector.

The new ‘functional capacity’ access test would place my son at serious risk (Part 1)

Part 1 introduces a new access framework based on ‘substantially reduced functional capacity’, assessed through standardised tools. My son has been assessed by multiple qualified clinicians: his Barthel Index is 20/100 (total dependency), his Care and Needs Scale indicate 20–23 hours of support per day, and his Lawton IADL score is 0/8 (complete dependence). His clinical team has documented in formal reports that his conditions are permanent and lifelong. Yet I have seen how assessment tools can be applied inconsistently and how people with complex, multi-factorial diagnoses — like my son, who is non-verbal, doubly incontinent, and whose presentation fluctuates significantly depending on health, fatigue, and anxiety — can be failed by instruments not designed for them. A standardised assessment on a single day could miss the reality of his 24-hour dependence entirely.

I urge the Committee to recommend the framework be co-designed with the disability community before being legislated, that existing participants not face mandatory re-assessment without safeguards and independent review rights, and that specific protections be included for people with non-verbal communication, complex behaviours, and fluctuating presentations.

Cutting my son’s community participation and capacity building funding would be devastating (Part 4)

Part 4 gives the Minister power to cut funding for social, civic and community participation and capacity building supports from 1 October 2026. My son’s plan is supposed to fund weekly exercise physiology, hydrotherapy five times a week (the only setting where he can actually walk), Sailability, community access, occupational therapy, speech pathology, and behaviour support. I say “supposed to” deliberately — My son’s most recent plan saw his funding cut, meaning he is already receiving less than his clinical team assessed he needs. His speech pathologist has documented that without an AAC system he will remain unable to communicate his basic needs to anyone outside his immediate support network. His occupational

Submission 2082

therapist has documented that without capacity building funding, My son cannot access the allied health supports required for any independence at all. He also lost his long-term support worker in October last year — a man who had supported him for 14 years and was like family to him. The worker’s sudden death left my son unable to regulate his grief because he cannot communicate it. The community participation supports that provide my son with structure, joy, and emotional regulation are more critical than ever. The prospect of these being cut by a Ministerial determination, without individual review or appeal, is genuinely alarming.

I urge the Committee to recommend the Ministerial determination power in Part 4 be removed, or at minimum be subject to parliamentary disallowance, independent review, and individual impact assessment before taking effect.

4. Removing unspent fund carry-over punishes participants for a broken system (Part 5)

Part 5 introduces legislated plan end dates with unspent funds forfeited at each anniversary. In the past year my son’s plan was affected by: three support workers leaving (one resigned, one went on maternity leave, and one passed away) with no easy replacements in a regional area; speech pathology requiring a practitioner to travel 81 kilometres each way; delays in AT recommendations moving through OT assessment, application, and sourcing; and the profound disruption of Fred’s death. None of this reflects a choice not to use supports — it is the direct result of rural workforce shortages, provider availability, and bureaucratic process. Under Part 5, funds unspent for these reasons would simply be lost. This penalises the most vulnerable participants for system failures entirely beyond their control.

I urge the Committee to reject Part 5 or require individual assessment of underspending reasons before any funds are forfeited, with clear carry-over pathways where barriers were beyond the participant’s control.

5. The impact on families and informal carers must be recognised

One of my sonl’s NDIS goals is simply this: “I need my mum to be my mum.” That goal is already failing to be met. Our family has paid an enormous price for our son’s care. My husband had to leave paid employment for a period; I have reduced my own working hours; Steve has been diagnosed with depression and anxiety; we have become socially isolated; our marriage is crumbling from the demands of having to provide hands on support. For years we lived in a caravan on our family property so my son could live independently with support in our family home — we have only recently moved back in. When the NDIS has worked as it should, the results have been extraordinary — my son now lives in his own space on our property with supports, something we genuinely never thought possible. He has gained independence we once only dreamed of, and we have begun to reclaim something of our own lives. That is exactly what the NDIS was designed to do. Steve and I are approaching retirement age. Like every other Australian couple our age,

Submission 2082

want to be able to have our own lives — to rest, to travel, to spend time with our other children and grandchildren. We should not still be providing hands on personal care for my son into our retirement years. The whole purpose of the NDIS was to ensure that people like my son have the formal supports they need so that their ageing parents are not their default carers for life. The support we provide to our son is unsustainable. This Bill, if passed as introduced, would cut the supports that give my son a life beyond his four walls through a Ministerial pen stroke, without review or notice. That is not what the NDIS was built for.

Real risks to my son — and real costs to government — if this Bill passes

The Government has framed this Bill as a sustainability measure. I want the Committee to understand what “sustainability” looks like in practice for someone like my son — and why cutting his NDIS supports is not a saving. It is a cost shift to other, far more expensive, parts of the government system.

If hydrotherapy and exercise physiology funding is cut:

Hydrotherapy is the only environment in which my son can weightbear and walk. Without it, his already limited lower limb function will deteriorate. His Cerebral Palsy does progressive muscle contracture — without regular exercise, this accelerates. The likely outcome is increased falls, reduced mobility, pressure injuries from prolonged wheelchair use, and a higher risk of respiratory complications from immobility. My son is also doubly incontinent. Managing his incontinence already requires multiple full personal care routines every day and night — clothing changes, showering, bed linen changes, and continence aid replacements. Without hydrotherapy and regular exercise maintaining what little physical capacity he has, his mobility and transfers will become more difficult, requiring more intensive manual handling from support workers and increasing the risk of injury to both my son and his carers. Reduced physical capacity also directly increases the volume and complexity of personal care required around his incontinence. Each of these consequences would result in hospital admissions, specialist medical care, and significantly increased personal care hours — all at public expense. A single unplanned hospitalisation for a person with my son’s complexity can cost tens of thousands of dollars. Preventing that through a funded hydrotherapy and exercise physiology program is not a luxury; it is preventive medicine.

If behaviour support and capacity building funding is cut:

My son’s behaviour support plan documents that his behaviours of concern — screaming, physical aggression, property damage — occur when he is overstimulated, fatigued, or unable to communicate his needs. These behaviours are currently managed through proactive strategies, structured routines, and skilled support. Without funded behaviour support, these behaviours will escalate. The consequences are concrete: injury to my son or his support workers leading to WorkCover claims and loss of staff; police call-outs; and potential crisis admissions to acute mental health or disability crisis services. My son has already lost two key support workers. Without the behaviour support framework that helps workers understand and manage his needs, retaining future workers becomes even harder

Submission 2082

— creating a cycle of workforce instability that increases costs and risk simultaneously.

If communication (AAC) funding is cut: My son is non-verbal and cannot communicate pain, distress, or medical symptoms. His speech pathologist has formally documented that without an AAC system, he will remain unable to communicate basic needs to anyone outside his immediate support circle. This is not just a quality of life issue — it is a patient safety issue. He cannot tell a nurse, a doctor, or an emergency responder that he is in pain, where it hurts, or what has happened. He cannot consent to or refuse treatment. In a medical emergency, this significantly increases the risk of misdiagnosis, delayed treatment, and poor outcomes. Emergency and hospital staff dealing with a non-verbal, highly distressed adult with complex behaviours and no communication system face an extremely difficult situation — one that is preventable with funded speech pathology and AAC support.

If community participation and social support funding is cut: My son’s behaviour support plan documents that his behaviours of concern are significantly reduced when he has access to structured, enjoyable community activities. When these are removed — as happened after Fred’s death — his emotional dysregulation increases, his behaviours escalate, and the burden on his family and support workers intensifies. Social isolation for people with complex disability is a well-documented driver of mental health deterioration, physical health decline, and ultimately higher dependency on acute services. Sailability, swimming, music, and community outings are not luxuries — they are the scaffolding that keeps him stable and out of crisis.

If carer support becomes unsustainable: The hands on care Steve and myself are providing is unsustainable already. Steve has a diagnosed mental health condition. If carer breakdown occurs, my son’s entire support system collapses. Beyond the risk of carer breakdown, there is an equally serious risk when he does not have trained, familiar supports around him. He is non- verbal, doubly incontinent, and unable to communicate pain, distress, or changes in his health. He relies entirely on people who know him well to detect early signs of illness or deterioration. Unfamiliar or untrained support workers — the inevitable result of workforce instability caused by inadequate funding — are far less able to recognise these signs. This directly increases his risk of hospitalisation from preventable deterioration. The alternative to family-based care supported by trained workers is residential or crisis accommodation — which costs government significantly more than the community-based, family-supported model that currently exists. Cutting NDIS supports does not save money. It accelerates the path to far more expensive crisis and residential care.

I urge the Committee to consider that the framing of this Bill as a “sustainability” measure is misleading. For participants with my son’s level of complexity, cutting preventive and capacity building supports does not reduce costs to government. It defers and amplifies them — in hospitals, emergency services, mental health systems, and residential care.

Submission 2082

7. Australia’s CRPD obligations

Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities — including the right to live independently in the community (Article 19) and to an adequate standard of living (Article 28) — are put at risk by the cumulative effect of Parts 1, 4 and 5 of this Bill. I urge the Committee to seek a CRPD human rights impact assessment before recommending its passage.

8. Summary of recommendations

I ask the Committee to recommend:

• That the Bill does not proceed until a genuine, extended community consultation process has been completed.
• That Part 1 (functional capacity access test) be subject to co-design with the disability community and include strong protections for people with complex, non-verbal, and fluctuating presentations.
• That the Ministerial determination power in Part 4 be removed or made subject to parliamentary disallowance, independent review, and individual impact assessment.
• That Part 5 (unspent fund forfeiture) be rejected or amended to require case-by-case review of reasons for underspending before any funds are forfeited.
• That a CRPD human rights impact assessment be conducted before the Bill is voted on.

My son is a 32-year-old man who loves music, swimming, and sailing. He wants to communicate, be part of his community, to visit his family in South Australia, and to have his mum be his mum — not his carer. These are not extraordinary ambitions. They are the basic promises the NDIS was built on. This Bill, in its current form, risks breaking those promises. I ask the Committee to stand with my son, and with the thousands of Australians like him, and demand better.

Submitted by: Relationship to participant: Mother and primary carer Date: 28 May 2026