Submission to the Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDS for Future Generations) Bill 2026

A note before you read: every word of this submission is true and based on my own lived experience supporting my son, . I have read it in full, and I confirm its accuracy. I used an AI tool only to help me articulate and present my own words clearly. The facts, the substance, and the views are entirely my own.

Submitted by , mother, nominee, and informal advocate for my son ( )

       , an adult with profound disability and complex communication needs. I self-manage 's NDIS funding, and I am also a working mother, working almost full time outside of and on top of my carer role.

I welcome the opportunity to contribute to this inquiry, and I would be willing to provide further evidence or to speak directly with the Committee.

1. Who I am and why I am writing

I am the mother, nominee, and informal advocate for my adult son, , who has profound disability, complex communication needs, and very high support needs. cannot independently navigate community life, mainstream services, communication, or decision-making without skilled, consistent support physically present with him. I am also a working mother. I work almost full time, outside of and on top of my carer role.

I self-manage ’s NDIS plan and I do not have a support coordinator. I manage all of the administration, workforce coordination, budgeting, rostering, recruitment, training, compliance, safeguarding, invoicing, and crisis response myself. Part of that load is constantly attending self-manager networks, hubs, workshops, and information sessions to make sure I stay compliant with the NDIS and keep up with every change to the rules.

Keeping compliant is itself ongoing, unpaid work.

employs his own support workers directly using his Withholding Payer Number (WPN), which is exactly the model the NDS directs self-managers towards. This is how we stretch his budget and make every dollar work harder. I have engaged a bookkeeper to handle the payroll that sits behind the WPN, which is a normal and reasonable part of running a compliant direct-employment arrangement.

I am writing because this Bill, as drafted, risks causing real harm to the very people the NDIS

was created to protect: participants with permanent, profound, lifelong disability who cannot

safely or meaningfully take part in community life without support.

2. The cohort the NDIS was built for must not become collateral damage

The Government has stated clearly that the NDIS must return to its original purpose, supporting people with permanent and significant disability and high support needs. is exactly that cohort. I agree with what the Government is doing in securing the NDIS for future generations like my son, .

Yet from 1 October 2026 the Government will cut budget allocations for social, civic, and community participation supports by 50 per cent, and capacity building daily activity allocations by 10 per cent, resetting average spend to 2023 levels. This is a blanket reduction. It does not distinguish between a participant who may gradually build independent capacity over time and a participant whose disability permanently prevents them from safely taking part in community life without support physically present.

For , community participation support is not discretionary and it is not a recreational extra. Community participation is also how he accesses the community itself, including getting to and taking part in his paid work, his volunteer work, and his further education. He can only do any of these things with support. It is the mechanism through which he has safety, inclusion, visibility, contribution, social connection, and protection from isolation. Every part of his community life requires a familiar, trained support worker present throughout, to assist with his communication, his connection with others, his decision-making, his safety, and his participation. Without that support, his community participation does not reduce. It stops entirely, and so does his access to work, volunteering, and education.

When support is cut for a person with profound disability, the result is not inconvenience. It is exclusion. A blanket reduction applied to profoundly disabled participants ignores functional reality.

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What has achieved, and what makes it possible

is a valued and contributing member of his community. He is assisted to take part in

current volunteer work, assisted in paid work, and assisted to facilitate his own free weekly

community event, which he developed and has run since 2021, and which has grown a

community of people around it.

’s presence and participation have changed how people in his community see what a

person can do with good support. This is the real, grassroots work that shifts perspectives, and it is having more impact than the large, expensive programs the scheme funds to do the same thing. The proof is that and I are repeatedly invited to present and to give keynote addresses, at human rights conferences, at supported decision-making forums, and at other national forums, to showcase our lived experience, what we have achieved together, and how genuine inclusion is actually built.

has also entered mainstream further education settings previously considered inaccessible for a person with his disability profile.

None of this is community access in the simplistic sense often portrayed in public debate. This is meaningful participation, contribution, leadership, and social change. It happened because of the extraordinary and sustained work behind every single thing does. Each activity in his life is built on careful preparation, skilled support, and years of dedicated effort. The amount of work involved in making his participation real is immense, and almost all of it is invisible to anyone watching from the outside.

Every one of these outcomes depends entirely on skilled core support. Without that support, his community participation, his work, his further education, and his community inclusion stop, and the safeguarding that comes from being connected and visible stops with it.

’s outcomes have been publicly celebrated by the NDIS, by Local Area Coordinators, and in the media as examples of what meaningful inclusion can look like for a person with profound disability. The Committee should weigh that carefully. A scheme cannot publicly hold a participant up as proof that it works while moving to remove the supports that made that success possible.

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At its heart, all of this comes down to one simple thing.

is leading an ordinary life, the

same as his same-age peers and his non-disabled siblings. He is accessing the same things they access, doing the things they do, and experiencing life the way they do. This is not gold-star treatment and it is not special. Everything he does has a purpose, and he gives back to his community every single day. He simply needs support to live the ordinary life that everyone else takes for granted. That is what good support makes possible, and that is what is at stake.

4. I have done everything the system asked of me

To secure the return of self-management for , I had to go through a 21-month Administrative Appeals Tribunal process. The delay arose in large part because the Local Area Coordinator did not understand that I could engage a bookkeeper to handle the payroll behind ’s WPN-based direct employment. That single misunderstanding cost nearly two years. The Tribunal ultimately found in our favour.

Throughout all of it, I have kept up with every rule change. I have attended every relevant conference, workshop, and information session the NDIS has run. I have kept pace with the legislation. I have made sure, at every step, that I was doing the right thing, so that ’s supports were compliant, his budget was stretched responsibly, and his outcomes were real.

This Bill applies a blanket reduction to everyone. It does not distinguish between the participants and families who have done exactly what the scheme asked, and those it is genuinely concerned about. A blanket cut punishes the people who have worked most diligently to do everything right, alongside everyone else. That is neither fair nor good policy.

5. The hidden cost carried by families

What is often missing from policy discussions is the enormous unpaid labour performed by family carers supporting participants with high and complex needs. People often imagine self-management as simple administration. In reality, self-managing a participant with profound disability involves workforce management, safeguarding oversight, complex rostering, financial administration, legal and compliance responsibilities, behaviour support coordination, training and supervision, crisis response, medical coordination, advocacy across multiple systems, and constant contingency planning.

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These responsibilities do not disappear when funding is reduced. They transfer onto

families. And the people absorbing that burden are overwhelmingly aging mothers who have

already been carrying it for decades. This Bill increases compliance and evidence obligations while retaining only the scheme’s most complex cohort, which means the administrative burden falls hardest on the people least able to absorb it. There has been no visible carer impact assessment accompanying these reforms. There must be.

This labour is not only the hands-on care. On top of the hands-on support sits a second, invisible layer: being the trained communication partner who makes sure can express himself and be understood by the world around him, the safeguarding oversight, the supported decision-making, and the deep knowledge of how he communicates that no one else holds. I have documented this in detail in a document I prepared called “Knowing ,” which sets out, activity by activity, the level of skilled support behind every part of his life.

That knowledge is itself unpaid, ongoing work. It has taken years to build and it cannot simply be handed to a stranger.

6. Community participation is also a safeguarding issue

Reducing community participation supports for people with profound disability is not simply a budgeting decision. It is a safeguarding decision.

The Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability identified social isolation and segregated environments as major risk factors for abuse, neglect, exploitation, and violence, and found that around 17,000 people with disability living in group homes are at significant risk. People with cognitive and intellectual impairments report the highest rates of all types of violence of any disability group. The NDIS Quality and Safeguards Commission’s own evidence review has similarly identified congregated and isolated settings as especially high-risk environments.

For participants who cannot independently self-advocate, report harm, or remove themselves from an unsafe situation, community connection and visibility are protective factors. When supports are cut, people do not simply stay home safely. They become isolated, and isolation increases vulnerability. For participants with profound disability, community participation support is not a lifestyle bonus. It is part of the safeguards framework that keeps people safe, visible, connected, and included.

7. Integrity measures must be proportionate

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I support genuine integrity measures within the NDIS. Fraud must be addressed. However,

the evidence publicly available suggests that large-scale fraud is overwhelmingly associated with provider misconduct and organised exploitation, not aging parents self-managing plans for profoundly disabled family members. The NDIA has acknowledged it cannot currently break down its non-compliant claims by type. Yet the practical burden of new evidence requirements falls heavily on self-managers.

I have consistently stretched ’s funding responsibly: employing workers directly through his WPN, negotiating directly, paying below price-guide maximums, avoiding inflated provider costs, undertaking all administration myself, and building long-term informal safeguarding networks, including a developing Microboard, to reduce future dependence on funded systems. Families doing this work are not the source of the scheme’s financial instability. The system should not create administrative barriers that unintentionally punish the very people delivering some of the strongest outcomes. Integrity measures should be proportionate to risk and scaled appropriately.

8. What I am asking the Committee to recommend

I respectfully ask the Committee to recommend the following before the proposed provisions commence:

 1. For now, while the rest of the reform is being sorted out, pause the blanket
    reductions to social, civic, and community participation supports for participants with
   profound and high support needs. These participants cannot build independent
    capacity over time, so a reduction that may suit others does not suit them. This
    cohort needs the certainty of knowing they will be okay. Protect this cohort while the
   broader changes are worked through.

 2. Require a published safeguarding impact assessment examining the risks of
    reducing community participation supports for participants with high and complex
   needs, including the risk of pushing people toward isolation and segregated settings.

 3. Require a published carer impact assessment addressing the unpaid administrative
   and compliance burden carried by aging family carers.

 4. Recognise self-managers as their own distinct group within the integrity framework,
    rather than applying provider-focused fraud and evidence measures to them as
   though they carry the same risk. The fraud the Bill targets is overwhelmingly

• Provider-side, and self-managers should not be treated as though they are the

• Establish a specialist self-management team within the NDIS that genuinely understands self-management and the flexibility around it, and that self-managers can connect with easily. At present there is no one to connect with. There is only a main phone line, and the staff there do not understand what self-management means, do not understand the flexibility involved, and do not even know what a WPN is. They assume everyone is attached to a provider, which is not the case. Self- managers need a knowledgeable point of contact so we can be confident we are always doing the right thing and staying compliant.

• Require transparency and due process in any automated compliance checking, rather than knee-jerk reactions. If the NDIS uses automated systems to review invoices, it must publish clearly what is required on those invoices so self-managers know in advance that they are compliant. Where something is queried, the participant or their nominee must be asked to explain before any action is taken, not punished automatically. Self-management should not be suddenly suspended over a query by someone who does not understand the person’s disability or how their supports work. Where a self-manager has a clear track record of stretching the budget, no blowouts, and never asking for anything extra, that record must be taken into account before any drastic step is taken. Genuine red flags can still be acted on immediately. Everything else deserves a question first.

• Apply proportionality principles to evidence requirements, so that low-risk self- managed claims are not treated identically to high-risk provider arrangements.

• Establish nationally consistent evidence standards before implementation, so families understand compliance expectations in advance rather than discovering them at the point of rejection.

• Protect payment continuity for directly employed support workers where claims are delayed for review.

• Recognise and learn from self-managers who are achieving outstanding outcomes with their funding. The NDIS says it wants outcomes. has outcomes, built through an immense amount of work, yet that work and those results go unrecognised. There should be formal recognition of strong outcomes, and people with lived experience like me should be brought in to speak directly with people within the NDIA, so the agency can understand and learn from what is genuinely working.

Closing

’s outcomes exist because support has been provided consistently, creatively, and responsibly over many years. His community contribution, his leadership, his visibility, his work, his education, and his social inclusion did not happen by accident. They were built carefully, through immense and sustained effort, with skilled support at every level of his life.

The Committee should consider what is lost, both humanly and economically, when supports become too thin to sustain lives like his. And it should consider who absorbs the cost when systems withdraw support, because the answer, overwhelmingly, is aging family carers who are already functioning beyond capacity.

The NDIS was created for people with profound and lifelong disability and high support needs. is exactly who it was built for. I am asking this Committee to make sure the scheme still protects people like him.

And one last thing I want the Committee to know about my son. Although ’s disability affects him profoundly, he has perfect pitch. He can play music in key, by ear. It is his gift, and it is real. With his trained support, we use that gift every day to help him connect with his community and to give something back to it. That is what is possible when a person with profound disability is given the right support: not a burden, but a musician, a leader, and a contributor. That is what this scheme can protect, and that is what I am asking you to protect.

                 , for

29 May 2026

A note on accuracy: Every statement in this submission is true and based on my lived experience supporting my son. I have read this submission in full and I confirm its accuracy.

I used an AI tool only to help me articulate and present my own words clearly. The substance, the facts, and the views are entirely my own.

                       Submission by           29 May 2026 | Page 8