Submission 3343 — Name Withheld — NDIS Future Generations Bill

Submission to the Senate Community Affairs Committee

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

Submitted by:

Date: July 2026

Consent to publish: We consent to this submission being published on the Committee’s website. Availability to appear: We are willing to appear before the Committee if invited to do so.

About us

Our names are        and                     , and we are writing jointly as the parents

of our daughter , who is almost 25 years old.

lives with profound and permanent disabilities and complex medical needs. She is non-verbal and requires support with every aspect of her daily life. We have cared for beyond normal parental care since she was diagnosed at 16 months of age with Agenesis Corpus Callosum (a large part of her brain missing), Inverted Duplication Deletion 8p (a very rare genetic disorder) and Cerebral Palsy. Since then, we have received many more diagnoses including Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), Dysphagia, Crohn’s disease and more. For almost 25 years, our lives have revolved around ensuring she is safe, healthy, loved, and given every opportunity to experience life as a young adult.

We are deeply concerned about the proposed changes in this Bill and what they would mean for and for families like ours.

The NDIS has never replaced us as ’s parents One of the greatest misconceptions about the NDIS is that it replaces family care. It does not.

We remain ’s parents and primary carers. We support her for approximately 15 hours every day, including overnight, where we take it in turns sleeping in ’s room with her every night so that we can attend to the care she needs. We assist with her personal care, health needs, mobility, emotional wellbeing, and every aspect of daily living – changing her continence pad, brushing her teeth, brushing her hair, dressing her etc. The support workers funded through the NDIS provide approximately nine hours of support each day, allowing to participate in her community with her day program while enabling us to continue working and to recover physically and mentally before taking over her care again.

The NDIS as it stands today, has not reduced our responsibilities as parents. It has made them sustainable.

Without these supports, the disability does not become less significant. The responsibility simply shifts back onto ageing parents whose capacity is not unlimited.

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Community participation is not a luxury Community participation is sometimes viewed as an optional support. For , it is essential.

currently receives six hours of community participation support per day, Monday to Friday, through her day program plus four hours on alternate Saturdays. Including travel support, this represents approximately seven hours of funded community participation on each weekday.

Because of her support workers, has developed genuine friendships with other young adults. She is recognised by people in local shops, enjoys going out into her community, and experiences the same everyday moments that many Australians take for granted.

With support, can shop for her own clothes, choose personal care items such as shampoo and deodorant, purchase food using her bank card with assistance, and make choices about her own life. These may appear to be small activities, but they represent dignity, independence, and inclusion.

Her support workers also help keep her physically healthy. They encourage her to walk short distances with support several times each day, support her at the gym to exercise with support using different types of equipment. Although she requires full support to engage, it is also another aspect of being a part of her community, and participating in a socially acceptable, meaningful and purposeful activity appropriate for her age. Her support workers help her exercise, which includes implementing a physiotherapy program, which keeps her active rather than remaining seated in her wheelchair all day. They motivate her, laugh with her, and help her experience sunshine, fresh air, and community life.

These supports are not recreational. They are preventative healthcare, social inclusion, and quality of life.

Our specific concerns about the 2026 Bill

The proposed reduction in community participation funding The Bill proposes to reduce individual NDIS plan budgets for social, civic, and community participation supports from 1 October 2026. ’s community participation budget would be directly at risk under these provisions. The exact impact will depend on how cuts are applied at individual plan review — but for a young woman who is non-verbal, relies entirely on her support workers to facilitate participation, and whose physical health depends on remaining active in the community, any reduction in that budget has direct and measurable consequences. The difference between a full day of community connection and even a single hour less of support is not abstract. It is the difference between activity and sitting in a wheelchair. It is the difference between social inclusion and isolation.

The proposed replacement — the Inclusive Communities Fund — is not equivalent The government has proposed a $200 million Inclusive Communities Fund as a partial replacement for the funding removed from individual plans. We want to be direct with the Committee: this fund is not an equivalent replacement for .

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The Inclusive Communities Fund grants money to mainstream organisations — sports clubs, arts groups, and community bodies — to build their capacity to offer activities for people with disability. It does not place funding into individual NDIS plans. It does not provide with a support worker who knows her, understands her communication needs, can respond to her medical requirements, and can safely accompany her.

For a person like — who is non-verbal, has complex medical needs, uses a wheelchair, and cannot communicate distress in ways that strangers would understand — accessing a mainstream group activity without a dedicated, trained support worker is not a realistic option. It is not a safe option. A community organisation receiving a capacity-building grant is not equipped to support her.

The Fund shifts power away from the individual and towards organisations that will decide which services are offered. ’s choice and control over her own supports — one of the founding principles of the NDIS — would be significantly diminished. cannot participate in a group setting without individual carer support. Under this proposal, she would be at significant risk of spending more time in her wheelchair because of competing care requirements in a group setting.

We also note with concern that the Bill introduces a new qualifier: that supports must be “reasonable and necessary, so far as is consistent with the financial sustainability of the scheme.” We are deeply troubled by this. Financial sustainability, while important, should not be a primary reason to withhold supports from a person with lifelong, profound, and permanent disability. ’s needs do not vary according to the scheme’s budget position.

The administrative burden already placed on families We wish to draw the Committee’s attention to a separate but related concern: the administrative burden already placed on families navigating the NDIS.

Ten years ago, we applied for home modifications to support ’s care and safety. The application was denied. We applied again this year. Our file had been lost — simply forgotten within the system — and it took months of persistent advocacy before the modifications were finally approved. We were fortunate enough to have the knowledge, time, and capacity to keep fighting. Many families do not.

This experience is not unusual. It reflects a system that, even before these reforms, places significant demands on families already carrying extraordinary caring responsibilities. Any reforms that increase complexity, reduce transparency, or require families to fight harder for what their loved ones are entitled to will fall heaviest on those least able to bear it.

Our greatest fear Our greatest fear is not caring for .

We have done that willingly and lovingly for almost 25 years.

Our fear is reaching a point where the supports that allow our family to function are reduced or withdrawn.

If that happened, would spend far more time at home. She would become socially isolated and lose the friendships and community connections she has built

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over many years. Her physical health would likely decline because she would have fewer opportunities to remain active. The risk of pressure injuries and other complications associated with prolonged sitting and reduced activity would increase. This would increase her risk of more frequent hospitalisations due to ill health.

For us, the impact would also be profound. Reduced supports would mean reducing our ability to work. That would place significant financial pressure on our family at a stage of life when most people are preparing for retirement. Instead, we would be required to provide even more physical care than we already do.

The consequences would not only be financial. They would be emotional, psychological, and physical.

Like many parents of adults with profound disability, we live with a constant underlying fear: if something happens to one of us, how will the other continue caring for ? The possibility of losing supports only magnifies that fear.

What we want the Committee to understand We do not believe many people truly understand what lifelong caring involves.

Disability does not end at five o’clock. It does not stop on weekends or public holidays. It does not pause because parents are tired, ageing, or unwell.

For families like ours, caring is every hour of every day.

People often ask about “good days” and “bad days.” For our family, a good day is simply one where stays well enough to remain at home. A bad day is one spent in hospital.

We have spent years in and out of hospitals, attending specialist appointments, treatments, therapies and medical reviews. The supports receives through the NDIS help keep her healthier because she remains physically active, mentally engaged, and connected with her community.

These supports do not remove her disability. Her capacity may not be able to be improved, but with her current supports it is maintained, and they help prevent avoidable decline.

As we get older, we know we cannot continue increasing our caring responsibilities indefinitely. Rather than decreasing, ’s needs remain profound every single day. That reality does not change because legislation changes.

Recommendations

We respectfully ask the Committee to:

1. Protect access to appropriate, individually funded supports for people with lifelong, profound, and permanent disabilities, and reject proposals that shift funding away from individual plans to organisations.

2. Withdraw or substantially revise the proposed reduction to community participation budgets for people with lifelong, profound and permanent disabilities, which will cause measurable harm to participants before any replacement infrastructure is in place.

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3. Ensure that any replacement for community participation funding — including the proposed Inclusive Communities Fund — provides equivalent individual, one-to-one support for participants who cannot safely access group activities without it, rather than capacity-building grants to mainstream organisations.

4. Remove or limit the “financial sustainability” qualifier on the reasonable and necessary test, which creates an open-ended power to reduce supports on budgetary grounds.

5. Ensure reforms do not increase reliance on ageing parents and unpaid family carers to replace funded supports.

6. Address the administrative burden already placed on families, including delays, lost files, and the expectation that families will repeatedly appeal decisions to receive what they are entitled to.

7. Ensure that people with lived experience of profound and permanent disability remain central to all future policy development.

Conclusion

We have never expected someone else to raise our daughter. We never thought ever that this is what our parental journey would be.

We have always accepted our responsibility as parents, and we always will. We adore our daughter, we love her deeply and she is our world.

What the NDIS has given our family is not an easier life. It has given us the ability to continue caring for while also remaining healthy enough, financially secure enough, and emotionally resilient enough to keep doing so. Reducing burdens and costs to the system of having her placed in a SIL/SDA setting.

Please remember that when supports are reduced on paper, disability itself is not reduced. The responsibility simply shifts onto families who are already giving everything they have.

We ask you to protect the people the NDIS was created for, and to ensure families like ours can continue providing the love, care, and stability our children and young adults deserve.

If it would assist the Committee, we are both willing to appear in person to give evidence, to collaborate or discuss further.

Thank you for considering our submission.

July 2026

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