Submission 3087 — Name Withheld — NDIS Future Generations Bill

Submission to the Senate Community Affairs Legislation Committee

Inquiry: National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Capacity: Support Coordinator, parent, carer and family member of people with disability

I write in response to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026. I understand the Bill was introduced on 14 May 2026 and seeks to amend the NDIS Act, including in relation to eligibility, funded supports, fraud

and  integrity  measures,  governance,  planning  and  administrative  arrangements. The

Department states that the Bill is intended to protect the NDIS for people with permanent and significant disability and for future generations, with changes focused on clarifying eligibility and funded supports, addressing fraud, and updating governance arrangements.

I support the sustainability of the NDIS. I do not support fraud, misuse of public funds, poor practice, or the exploitation of participants. However, I am deeply concerned that if the Scheme is made “sustainable” primarily through narrowed access, reduced budgets, reduced support categories, automated or overly standardised decision-making, or cost-shifting to mainstream systems that are not actually equipped to respond, the outcome will not be sustainability. It will be harm displaced elsewhere: to hospitals, child protection, homelessness services, mental health systems, emergency services, unpaid carers, and grieving families.

The Committee has indicated that personal experiences are welcome where they directly

address provisions of the  Bill. My submission  is based on my professional experience

supporting participants and families, as well as my own family circumstances. I have de identified participant examples where appropriate.

Summary of recommendations

I ask the Committee to recommend that the Bill not proceed in any form that reduces access or funding before replacement supports are actually available, funded, accessible and accountable.

In particular, I recommend:

1. No participant should lose access to the NDIS or experience significant funding reductions unless a real, funded, equivalent or appropriate alternative support pathway is already available.

   2. Foundational supports, Medicare, schools, hospitals, state disability services and

community supports must be properly funded before the NDIS is narrowed. A referral to a non-existent or overstretched mainstream service is not a safeguard.

3. Any functional capacity assessment process must include treating practitioner evidence, carer evidence, risk evidence, episodic and degenerative conditions, psychosocial disability, communication needs, informal support limitations and the consequences of withdrawing support.

   4. Support determinations or budget reductions for categories such as social and

community participation, capacity building daily activities, support coordination, therapy, home and living, or behaviour support must not be applied bluntly or at group level without individual risk assessment.

5. Integrity and fraud measures should target actual wrongdoing without creating an assumption that providers, participants or families are inherently dishonest.

6. Pricing and registration changes must consider the real cost of providing quality supports, including wages, superannuation, insurance, training, travel, rostering,

supervision, audit costs, administration and unpaid work that is already occurring across the sector.

7. There must be a clear health-disability interface, particularly in hospital settings, so participants with disability-related mealtime, communication, behavioural, personal

   care or supervision needs do not fall into a gap between health and NDIS

responsibilities.

8. Children and families who do not meet NDIS access should still have access to low- cost or gap-free early intervention therapies, including occupational therapy, speech pathology, physiotherapy and psychology, rather than being left with unaffordable private therapy costs.

9. The social and economic contribution of the NDIS must be recognised. The Scheme does not simply “cost” money. It prevents deaths, reduces hospital admissions, supports family carers to remain employed, allows participants to contribute, and prevents avoidable deterioration.

The NDIS is not only a cost. It is a life-preserving support system.

The Bill includes measures relating to functional capacity, unscheduled plan reassessments, stronger links between impairment and support needs, support determinations, plan renewal, reasonable and necessary supports, plan suspension and permanence. These provisions may appear administrative, but in practice they will determine whether people are fed safely, showered safely, supported to communicate, prevented from absconding, supported after hospital discharge, and kept alive.

One participant I supported had a significant degenerative neurological condition and very high support needs. She required careful mealtime management, modified food and fluids, full assistance, supervision, and disability-informed care. During a hospital admission, she did not appear to receive the level of feeding, hydration, supervision and disability-specific support required to keep her safe. Family and support providers raised concerns about food and fluids being left untouched and about the absence of the one-to-one support she required.

I cannot say that one decision or one system failure caused her death. However, I am deeply concerned that the absence of adequate disability-related support in hospital, combined with delays and inadequate initial funding for someone with very significant needs, contributed to a foreseeable and potentially preventable deterioration. This is the kind of risk that does not show up when the NDIS is discussed only as a budget line. When funding is delayed, reduced, or pushed back to “health”, the person does not become less disabled. Their needs simply become unmanaged.

In this case, the NDIS was not a luxury. Dedicated disability supports were the difference between safe support and unsafe care. Hospital systems are not designed or staffed to provide sustained disability support at the level required by many people with complex disability. If

reforms  reduce NDIS  responsibility  without  creating  an  enforceable  health-system

responsibility, participants will continue to fall into a dangerous gap.

Delays and administrative barriers create real-world harm.

Another participant, following multiple strokes and significant functional decline, required urgent home modifications and safe bathroom access. Delays and barriers, including issues with recognition of guardianship/nominee arrangements, meant that essential matters stalled. The person was left with unsafe access, a shower-over-bath environment, fear of falling, reduced hygiene, distress and loss of dignity.

This  is not an  isolated  issue. Delays  in recognising decision-makers, delays  in plan

reassessment, delays in home modification processes, and inadequate support coordination hours all create harm. The Bill proposes tighter criteria for unscheduled plan reassessments. I understand the need to prevent unnecessary churn, but urgent reassessment pathways must remain available where there are genuine changes in function, informal support collapse, housing breakdown, hospital discharge risk, behaviour escalation, safeguarding risk or carer burnout.

For many participants, the issue is not that they are receiving too much. The issue is that they cannot access the right support quickly enough to prevent harm.

Carers are not an unlimited workforce.

A repeated theme across my work is that families are expected to absorb risk indefinitely. Parents of children with disability often cannot imagine an ordinary life for themselves or for their child. They worry not only about the next week or next plan review, but about what happens when they die. For many, the fear is not abstract. They are not confident their child will be safe, housed, fed, supported, protected from exploitation, or alive when they are no longer able to provide care.

I have worked with families where parents are ageing, unwell, traumatised, financially stretched or physically unable to continue providing the level of care required. I have seen mothers managing behaviours of concern, epilepsy, school exclusion, police involvement, hospital systems and NDIS evidence gathering while also dealing with their own serious health needs. I have seen families trying to keep a young person safe while being told by health services that behaviours are “NDIS-related”, by NDIS that needs are “health-related”, and by police or emergency systems that the matter is not theirs to manage.

The Bill proposes that reasonable and necessary considerations include Scheme sustainability and equity across participants. Equity is important, but equity cannot mean pretending informal supports are endlessly available. A parent who is burnt out, medically unwell, ageing or unsafe cannot be treated as a free replacement for funded disability support.

The NDIS mitigates risks that other systems cannot manage.

I have supported participants where NDIS-funded supports have reduced or mitigated:

 unsafe hospital discharge;  falls risk and pressure injury risk;  absconding risk;  carer burnout;  child protection escalation;  police involvement;  homelessness risk;

 unsafe manual handling;  poor nutrition and mealtime risk;  social isolation;  school disengagement;  family breakdown;  unnecessary hospital presentation;  loss of dignity and independence  serious harm or death.

For one young adult participant, short-term respite and carefully matched support staff were not simply “social support”. They were risk mitigation. They provided a structured opportunity to test support arrangements, collect behavioural data, reduce family strain, support transition planning, and prevent escalation. For another young person, therapy, behaviour support and support coordination were necessary to manage significant behaviours of concern, family stress, police involvement and school-related risk.

For children, supports such as occupational therapy, speech pathology, psychology, behaviour support and support coordination often prevent escalation. They help children communicate, regulate, attend school, develop daily living skills, participate socially and reduce reliance on family over time. Removing or delaying these supports does not make the need disappear. It often makes the later support need more complex and more expensive.

Mainstream systems are not ready to replace the NDIS.

The Department has stated that consultation will occur in the second half of 2026 on new framework planning, functional capacity eligibility, home and living commissioning, support coordination and connection functions, pricing reforms and market reforms. The same material states that access changes are expected from 1 January 2028, with reassessment of existing participants progressively over three years.

This staged timing is important, but it does not answer the core question: what will actually be available to people who are found ineligible or whose funding is significantly reduced?

In my own family, my son has a diagnosis of ADHD. He requires occupational therapy and has also been recommended physiotherapy for tense calves and podiatry for toe walking. He is unlikely to meet NDIS access requirements on the basis of ADHD alone. Under a chronic disease management plan, Medicare subsidises only a very small number of allied health sessions per calendar year. MBS material refers to up to five individual allied health services per calendar year under chronic disease management items.

Fortnightly occupational therapy at $200 out of pocket is 26 sessions per year. If five subsidised

sessions  are  available and  the remaining 21  sessions  are paid  privately,  that  is  still

approximately $4,833 per year out of pocket for occupational therapy alone. That does not include physiotherapy, podiatry, assessments, reports, travel, missed work, school meetings or other supports. Private health insurance covers only a small portion and is not a realistic solution for many families.

This is exactly why reforms cannot simply say that children with lower or moderate needs will be supported elsewhere unless “elsewhere” actually exists. If the replacement is five subsidised sessions a year and then thousands of dollars in private costs, families will go without. Children

will miss early intervention windows. Schools will carry more pressure. Parents will burn out. Later systems will pay more.

My own family could not function without the Scheme.

My partner has a significant degenerative condition. Without the NDIS, I would not be able to work. Even with the small amount of support he receives each week, I am largely running on zero battery trying to survive work, caregiving, parenting and household responsibilities.

Before access to support, there were times where I had to worry that if I left the home, my partner could collapse or stop breathing. This is not a theoretical policy discussion for families like mine. It is the difference between being able to work and not being able to work. It is the difference between children having a parent who can function and a parent who is constantly depleted. It is the difference between a family remaining stable and falling into crisis.

My mother has also had significant physical disabilities from birth. My father is ageing and is no longer able to provide the level of physical care and support she requires. Without the NDIS, there is a real risk that her care needs would fall to me. I love my mother deeply, but I am not able to provide care to my mother, my partner and my children, while also continuing to work and maintain my own health.

This is the reality for many families. When funded disability supports are removed or reduced, the care does not disappear. It is shifted onto daughters, sons, partners, parents and siblings, many of whom are already at or beyond capacity. For families like mine, the NDIS is not replacing ordinary family responsibility. It is preventing complete family collapse.

Many families are already close to burnout all the time. The public health system is already inadequate and would not cope with the strain created by sweeping NDIS changes without careful consultation, transitional protections and fully funded alternatives.

Fraud must be addressed, but providers should not be treated as the enemy.

I acknowledge there is fraud, poor practice and exploitation in parts of the Scheme. Participants must be protected from providers who overcharge, provide poor quality support, engage in coercive practices, manipulate families, or treat people as funding packages rather than human beings.

However, the public discussion often frames providers as the primary source of the problem. That is not my experience of the majority of providers. The vast majority of providers I work with are trying to keep participants safe, increase quality of life, prevent deterioration, reduce family burnout, and prevent avoidable deaths or crises. Many go well beyond what they are funded to do.

The Bill includes expanded registration capacity, civil penalties, monitoring and investigation powers, record-keeping requirements, reduced claim timeframes, plan management changes, pricing governance and automation of some administrative actions. Some of these measures may be reasonable if implemented carefully. However, they must be proportionate and must not create administrative burdens that small, ethical providers cannot survive.

NDIS pricing is often described as inflated without proper consideration of what providers must pay for: wages, superannuation, workers compensation, insurance, training, supervision,

rostering,  travel,  cancellations,  incident  management,  compliance,  registration  audits,

bookkeeping,  software,  phones,  vehicles,  unpaid  coordination,  report  writing  and

administration that is not claimable. Many workers in the sector are poorly paid relative to the emotional load, risk and responsibility of the work. Many providers and sole traders complete unpaid work because participants are left in difficult situations and there is no practical alternative.

If pricing is reduced without understanding these costs, quality providers will leave. The providers most willing to stay may not be the safest or most ethical. Sustainability cannot be achieved by making good providers financially unviable.

Fairness requires nuance, not blunt reduction.

I agree that there is unfairness within the NDIS. Some participants appear to receive far more than they reasonably require, while others with very high needs receive far less than is necessary to keep them safe. Some families can advocate strongly, obtain reports and navigate reviews. Others cannot. Some have support coordinators; others are left alone with complex systems. Some participants have articulate carers; others have no one.

The answer is not blunt cuts. The answer is better evidence-based planning, better risk assessment, better review rights, better health-disability interface, better fraud detection, and better non-NDIS supports for people who do not meet access.

The NDIS should be reserved for people with permanent and significant disability, but Australia must still support people outside the Scheme. There must be affordable, accessible pathways for children needing early intervention, adults with disability who fall below NDIS access, carers at risk of burnout, and people whose needs sit between health, disability, education and community services.

The NDIS must be understood within the broader disability support system.

It is important that the Committee considers the NDIS in the context of the broader disability population, rather than treating the Scheme as though it supports all Australians with disability. In 2022, the Australian Bureau of Statistics reported that 5.5 million Australians, or 21.4% of the population, had disability. Of all Australians, 7.9% had a profound or severe disability, which equates to approximately 2 million people. This is important context when considering NDIS reform. The NDIS supports a significant number of people, but it does not support all Australians with disability or even all Australians with profound or severe disability. The ABS also reported 3.0 million carers, including 1.2 million primary carers, with 43.8% of primary carers having disability themselves.

By comparison, the NDIA reported that as at 31 March 2026, 774,456 participants had approved NDIS plans. This means the NDIS supports only a portion of Australians with disability. It is not, and was never intended to be, the entire disability support system.

This distinction matters. If eligibility is narrowed or funding is reduced, people do not stop needing support. They instead fall back onto systems that are already under pressure: families, schools, hospitals, Medicare, state disability services, mental health services, housing, police,

child protection and unpaid carers. Reform cannot responsibly proceed on the assumption that those systems can absorb additional demand unless they are funded and ready before changes occur.

The broader statistics also challenge the idea that the NDIS can be made sustainable simply by moving people out of the Scheme. If people with disability are found ineligible for the NDIS, or if participants experience substantial reductions in funding, there must be a clear answer to where their support will come from. Without properly funded foundational supports, low-cost allied health pathways, responsive health and education systems, and practical carer supports, the cost will not disappear. It will be shifted to families, crisis systems and other parts of government.

The economic contribution of the NDIS must be counted.

I dispute the idea that money invested in the NDIS is simply a drain on taxpayer funding. The NDIA’s own quarterly reporting shows that the Scheme is associated with improved social and

economic  participation.  In March 2026  reporting,  families and  carers  reporting  paid

employment increased from 47% at baseline to 53% at latest reassessment, while participants aged 15 and over reported increased participation in community and social activities from 34% to 41%.

Further the Scheme supports participants to live with dignity, prevents avoidable deterioration, prevents deaths, allows carers to participate in employment, enables participants to work or volunteer where possible, and reduces pressure on hospitals and crisis systems.

The Parliamentary Library’s Bills Digest notes the Bill responds to an imperative to reduce expenditure growth, with projected reductions in NDIS expenditure growth of $37.8 billion over four years. It also notes that costs are still expected to rise each year, but at a lower rate. Cost control is legitimate. But savings must be measured against downstream costs: hospital admissions, ambulance callouts, carer unemployment, family breakdown, child protection involvement, homelessness, mental health crises, injury, neglect and premature death.

A dollar not spent by the NDIS does not always become a dollar saved. Sometimes it becomes ten dollars spent later by another system. Sometimes it becomes an unpaid cost carried by a mother, partner, sibling, child or ageing parent. Sometimes it becomes irreversible harm.

Conclusion

I ask the Committee to ensure that reform protects the Scheme without abandoning the people the Scheme exists to support.

The NDIS needs sustainability, but sustainability must not be achieved by narrowing access

before alternatives  exist, reducing supports without individual  risk assessment, treating

providers as presumptively fraudulent, or shifting responsibility to mainstream systems that are already unable to meet demand.

The NDIS is not perfect. There are rorts. There is inequity. There are participants who receive too much and participants who receive far too little. But at its core, the Scheme saves lives, protects families, supports employment, preserves dignity, and prevents people with disability

from being hidden, institutionalised, hospitalised, neglected or left entirely to exhausted unpaid carers.

Reform should strengthen those outcomes, not place them at risk.