Submission 2352

Submission to the Senate Inquiry

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

Summary of concerns

I am making this submission as the cousin of a 29-year-old NDIS participant who lives with severe non-verbal autism, intellectual disability, and complex support needs. I am also part of his broader circle of support.

My central concern is that the proposed amendments risk treating deeply individual support needs as if they can be reduced through broad, administrative formulas. For people with profound disability, a reduction in support is not simply a reduction in service. It can mean increased risk, isolation, family distress, and greater pressure on the wider community.

In particular, I am concerned that:

• Section 34A may allow flat-rate reductions to NDIS plans by ministerial instrument, without proper consideration of the individual participant’s circumstances.
• A proposed 50% reduction to Community Participation funding from 1 October 2026 could significantly reduce my cousin’s overall Core supports and leave him without support for several hours each day.
• For a person who requires 24/7 support, even a few unsupported hours can create serious risks, including distress, self-injury, injury to others, absconding, and crisis escalation.
• Families should not be expected to silently absorb the consequences of funding reductions, especially where parents are aging or have health conditions of their own.
• Community Participation should not be viewed as optional or recreational in a narrow sense. For people like my cousin, it is part of maintaining health, routine, emotional regulation, dignity and connection.
• The proposed restriction of supports to a person’s primary qualifying impairment does not reflect the way complex disability actually works. Comorbidities and fluctuating conditions must be considered where they affect a person’s functional capacity.
• Any decision that substantially affects a participant’s level of support should be reviewable within a reasonable timeframe.

Submission

I am writing as the cousin of a 29-year-old man with severe, non-verbal autism and intellectual disability. I am also part of his circle of support.

Although I am not his parent, I have seen the reality of his disability over many years. I have seen the level of care, planning, skill and vigilance required to support him safely. I have also seen the emotional and physical toll that lifelong advocacy places on families who love someone with profound disability.

Submission 2352

My cousin does not have the capacity to advocate for himself in the way many people take for granted. He cannot explain his needs, negotiate his supports, describe his distress, or make a case for why his life matters. That responsibility falls to the people around him: his parents, family members, support workers, clinicians and others who understand his needs.

For this reason, I believe any changes to the NDIS must be approached with great care. A policy change that may appear administrative at a government level can have immediate and serious consequences in the life of a person who depends on continuous support.

The NDIS has enabled my cousin to have a life that is safer, more structured, and more connected than would otherwise have been possible. It has allowed him to live in specialist disability accommodation, receive appropriate support, and participate in community life in ways that are meaningful for him.

This is not a luxury. It is the foundation of his safety and dignity.

The problem with broad funding reductions

One of my key concerns is that Section 34A appears to allow funding reductions to be applied broadly, without adequate individual review.

This is deeply concerning because disability support needs are not uniform. A flat reduction may affect different participants in vastly different ways. For some, it may reduce flexibility. For others, it may remove essential hours of support. For someone like my cousin, who requires 24/7 care, the consequences could be severe.

The proposed reduction to Community Participation funding is particularly concerning. In my cousin’s case, the scheduled 50% cut from 1 October 2026 could reduce his total Core support by approximately 13.2%. That is not a minor adjustment. It could translate to more than three hours each day without support.

For a person with profound communication, social, behavioural and daily living support needs, three unsupported hours per day is not safe.

My cousin’s support needs exist across every part of daily life. He requires assistance to remain safe, to manage routines, to participate in activities, and to reduce the risk of distress or escalation. Without appropriate support, he may be at risk of self-injury, injury to others, absconding without road safety awareness, or significant behavioural distress.

These are not speculative concerns. They are the kinds of risks that justify 24/7 support in the first place.

If a participant has already been assessed as requiring continuous support, then any reduction that interrupts that continuity should require careful individual assessment and a clear right of review.

Families cannot be treated as the backup system

A major flaw in broad funding reductions is the assumption that families will somehow fill the gap.

In many cases, they cannot.

Submission 2352

My cousin’s parents have devoted their lives to supporting and advocating for him. However, they are aging and have health concerns of their own. Like many parents of adults with profound disability, they carry the ongoing fear of what will happen when they are no longer able to provide support, oversight or advocacy.

That fear is not abstract. It is a daily reality for families.

The NDIS was supposed to provide a sustainable support system so that people with disability were not dependent entirely on the strength, health, finances or survival of their family members. If funding reductions force families back into crisis roles, then the scheme is failing one of its most important purposes.

Extended family members, including cousins, siblings, grandparents, aunties and uncles, may form part of a person’s emotional and relational circle of support. But that does not mean we can replace trained, funded, reliable disability support.

Family love is not a substitute for formal care.

When governments reduce formal supports, the cost does not disappear. It is transferred — to parents, relatives, unpaid carers, emergency services, hospitals, police, crisis accommodation and community systems that are already under pressure.

This is why the proposed changes should not be considered only through the lens of budget control. They must also be considered through the lens of risk, cost-shifting, human dignity and community responsibility.

Community Participation is essential, not optional

The term “Community Participation” can make these supports sound discretionary, as though they are merely social outings or lifestyle extras. For my cousin, that is not the case.

Community Participation supports help him access the world beyond his home. They support his physical health, emotional wellbeing, routine, social familiarity and quality of life. Activities such as attending the gym, bushwalking, being involved in recycling donations for the RSPCA, and attending family gatherings are meaningful parts of his life.

These activities also serve important practical purposes. They help maintain physical movement. They provide structure. They reduce isolation. They support regulation. They allow him to remain connected to people and places that are familiar to him.

For a person with severe autism and intellectual disability, participation in the community does not do independently. It requires skilled support, preparation, supervision and an understanding of his communication, behaviours and triggers.

Removing or reducing that support does not make him more independent. It makes him more isolated.

A society committed to disability inclusion should not define a good life for people with profound disability as simply being housed, fed and kept alive. A good life must also include connection, belonging, activity, relationships, and the opportunity to be part of the community.

Community Participation is one of the mechanisms that makes this possible.

Submission 2352

Complex disability cannot be reduced to one diagnosis

I am also concerned about the proposal to limit funded supports to those arising directly from a participant’s primary qualifying impairment.

This approach does not reflect the lived reality of complex disability.

My cousin’s primary disabilities are severe non-verbal autism and intellectual disability. However, he also has a diagnosis of Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus, known as PANDAS.

When he experiences PANDAS flares, his functioning can deteriorate significantly. These flares may involve extreme obsessive-compulsive behaviours, movement difficulties, vocal tics, heightened distress, and reduced tolerance for change. In practice, this means his support needs can increase beyond his already significant baseline needs.

It would be artificial and unsafe to try to separate these conditions from one another when assessing his support requirements. His autism, intellectual disability and PANDAs do not operate in isolation. They interact. They compound. They affect the whole person.

A funding framework that considers only the “primary” impairment risks misunderstanding the actual support needs of people with complex conditions.

This is especially concerning for participants who cannot verbally explain changes in their condition. If a person cannot describe pain, fear, confusion or distress, then the system must be especially careful not to narrow the evidence it is prepared to consider.

Functional capacity should be assessed in the real world, not through a rigid hierarchy of diagnoses.

The need for review rights and safeguards

Any decision that significantly reduces a participant’s support should be subject to review.

This is particularly important where the participant has high and complex needs, requires 24/7 support, or faces documented safety risks if support is withdrawn.

A no-review process would leave families and support networks powerless to challenge decisions that may be based on incomplete information, misunderstanding, or administrative error. That is not a fair or safe approach.

The NDIS deals with people’s lives, not just budget categories. Participants and families must have access to timely, meaningful review processes when decisions affect safety, dignity and daily functioning.

Where Community Participation funding is reduced, there should also be safeguards to ensure that a participant’s essential Core support is not unintentionally compromised. If a person requires continuous support, the funding structure must preserve that continuity.

A reduction that creates unsupported hours for someone assessed as needing 24/7 support is not merely a financial decision. It is a safety decision.

Submission 2352

What I ask the Committee to consider

I ask the Committee to consider the following:

• Flat-rate funding reductions should not be applied to participants with complex or 24/7 support needs without individual assessment.
• Any reduction that affects a participant’s daily support hours should be reviewable within a reasonable timeframe.
• Community Participation funding should be recognised as essential to wellbeing, safety, inclusion and prevention of crisis, particularly for people with profound disability.
• Families should not be treated as the default replacement for formal funded supports.
• Comorbid conditions must be considered where they affect a participant’s functional capacity, even if they are not the primary qualifying impairment.
• The NDIS should remain focused on the real-life needs of participants, not only on simplified categories of impairment or broad budget mechanisms.

Conclusion

My cousin is a person of immense value. He is loved by his family. He belongs in his community. He deserves a life that is safe, stable, meaningful and dignified.

Because he cannot speak for himself, the people around him must speak with care and honesty about what these proposed changes may mean.

For families like ours, the concern is not theoretical. We know what happens when support is not adequate. We know how quickly distress can escalate. We know that aging parents cannot carry the full weight of care forever. We know that community inclusion requires more than good intentions — it requires properly funded support.

The NDIS should not move toward a model where people with the most complex needs are made more vulnerable by broad reductions, limited review rights, or narrow definitions of disability.

The purpose of the scheme should be to protect the dignity, safety and inclusion of people with disability now and into the future. In its current form, I am concerned that this Bill risks doing the opposite.

I urge the Committee to ensure that any reforms preserve individual assessment, review rights, recognition of comorbidities, and the essential supports that allow people like my cousin to live safely and meaningfully in the community.