Submission 3068 — Name Withheld — NDIS Future Generations Bill | External submission

Submission to the Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment

(Securing the NDIS for Future Generations) Bill 2026

9th July 2026

To the Committee Secretary,

We write in relation to the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.

We are the parents of an adult daughter in her 30s who has significant intellectual disability, Level 3 autism, and serious behaviours of concern. She is largely non-speaking and requires substantial support with activities of daily living, communication, regulation, community participation and personal safety.

We are now in our late 60s.

We are making this submission because any reform to the NDIS must protect the people the Scheme was created for: people with permanent and significant disability who cannot safely or meaningfully participate in ordinary life without substantial support.

We support protecting the NDIS from fraud, waste and poor-quality practice. However, we are deeply concerned that “sustainability” is too often framed as budget containment, rather than as the long-term sustainability of disabled people, families, informal carers and the direct support workforce.

A sustainable NDIS is not one where the spreadsheet looks better because exhausted families are forced to absorb the unpaid labour. A sustainable NDIS is one where people with profound and lifelong disability receive the level of support required to live safely, with dignity, and with a realistic pathway to life beyond ageing parents.

Our daughter’s situation.

Our daughter has never had a plan that would properly support her for more than approximately four 24-hour periods per week. This has left us in an impossible position.

We are expected to provide unpaid care across the remaining days and nights, while also coordinating workers, managing risk, dealing with service failures, and trying to keep our daughter’s life from shrinking further.

This is not an ordinary parental role. This is not a normal family contribution. This is a full time, high-risk support arrangement being propped up by ageing parents because the NDIS has not funded the level of support actually required.

The hidden consequence of underfunding: families has required those families to become labour negotiators.

Because our daughter’s plan has not funded the level of support needed, we have been forced into wage negotiation with employees and support workers. This is an unacceptable and unsafe position for families to be placed in, because it creates pressure to underpay or engage less experienced workers for highly complex roles, increases the risk of inadequate training and supervision, and exposes both our daughter and the workers themselves to harm when behaviours of concern are not managed by appropriately skilled and supported staff. In reality, many of the workers required for this level of support are highly skilled, experienced and capable of managing complex behaviours, communication needs and safety risks, yet the funding constraints mean they are often paid at rates that do not reflect the difficulty, responsibility or expertise required. This leads to burnout, high turnover and a shrinking pool of capable workers, further destabilising already fragile support arrangements.

When a person requires high-level support, including the management of behaviours of concern, the workforce must be skilled, consistent and adequately paid. Underfunding does not make the support cheaper in any real sense. It simply pushes the shortfall onto families, who are then forced to either attempt to pay skilled workers less than the work is worth, hire less experienced or less qualified workers, reduce support hours, provide unpaid care themselves, or accept unsafe arrangements.

In our daughter’s case, attempts have been made to employ less qualified or less experienced people. Those arrangements have failed. Workers without the necessary skill have been unable to manage behaviours of concern, unable to support day-to-day activities of daily living safely, and unable to provide the consistency required for our daughter to have a decent life.

This is not because our daughter is “too hard”. It is because the support model is not adequately funded for the reality of her disability.

The Bill must not entrench a model where family labour hides the true cost of support. If sustainability measures result in participants being underfunded and families being forced to negotiate down wages or accept unsafe staffing, the Scheme will not be sustainable. It will simply be outsourcing the cost to ageing parents.

Ageing parents cannot be treated as the default service system.

We are in our late 60s. At this stage of life, most people are moving toward retirement, rest, financial stability and some enjoyment after decades of work and family responsibility.

Instead, we remain responsible for the day-to-day survival and support coordination of our adult daughter.

We are not simply “helping out”. We are carrying the weight of a failed support system.

This has placed enormous strain on us and on our relationship. Through all of this, we have managed to stay together by the skin of our teeth, but that should not be the benchmark. The NDIS should not rely on marriages, bodies and mental health being stretched until breaking point before sufficient support is provided.

The Bill must include safeguards to ensure that informal supports are not overestimated, especially where parents are ageing, physically exhausted, financially strained, or have been providing intense care for decades.

Any legislative framework that gives greater weight to “available family supports” must also require a proper assessment of whether those supports are reasonable, safe, sustainable and ethical. Parents in their late 60s should not be treated as a permanent substitute for funded disability support.

Day services and Supported Independent Living (SIL) are not magic answers

There is a continuing push to return our daughter to day services or Supported Independent Living environments.

On paper, those options may look neat. In reality, they have already failed her.

Over a period of approximately 10 years, services have attempted to support our daughter and have ultimately been unable to do so because her needs and behaviours of concern were deemed too difficult to manage. The same systems that could not support her safely are now being treated as if they are obvious solutions.

This is one of the most dangerous failures in NDIS planning and reform: the assumption that a service type exists, therefore it is suitable.

A day service is not a support if the participant cannot safely attend it.

SIL is not a solution if the provider cannot manage the participant’s behaviours of concern, communication needs, distress, personal care, routines and safety.

Mainstream or congregate options are not “reasonable alternatives” simply because they exist somewhere on paper.

For participants with Level 3 autism, intellectual disability and significant behaviours of concern, unsuitable services can increase distress, increase restrictive practices, worsen behaviours, traumatise staff, traumatise the participant, and lead to repeated placement breakdown.

The Bill must not allow participants to be pushed into settings that are assumed to be cheaper or easier, but in reality cost the same and have already failed them. Any reform that gives decision-makers greater ability to narrow funded supports must require evidence that the proposed alternative is actually available, safe, appropriate and capable of meeting the participant’s needs.

Allied health: high cost, low accountability

A further concern is the role of allied health in the current NDIS system.

For participants with behaviours of concern, allied health is often treated as the key to unlocking better outcomes. In theory, that makes sense. In practice, families are often left paying extremely high hourly rates to professionals who have enormous influence over plans,

behaviour support, recommendations and outcomes, but very little practical accountability when nothing changes.

Our daughter has had no fewer than five behaviour support practitioners. Despite the cost, those practitioners have achieved less in practical terms than skilled support workers who know our daughter, understand her communication, and can actually support her through daily life.

We have been left with continuing behaviours of concern, insufficient core supports, repeated service failure and a daughter whose life remains restricted and dependent.

This is not an argument against allied health. Good allied health can be life-changing. Good behaviour support can reduce restrictive practices, improve quality of life, and support families and workers to understand the person better.

The concern is that the current system often treats allied health professionals as the rulers of outcomes, while giving families very little recourse when their work is expensive, generic, impractical, delayed, or ineffective.

If the Bill is genuinely about securing the NDIS, then it must address not only participant spending and fraud, but also poor value, poor outcomes and lack of accountability from high cost professional services.

There must be stronger oversight of allied health and behaviour support practitioners who charge significant rates but do not deliver measurable improvements in the participant’s life. Oversight should include whether recommendations are practical, whether they improve the participant’s freedom and safety, whether they reduce behaviours of concern, whether they reduce reliance on restrictive practices, and whether they support the workforce and family to implement strategies.

The NDIS should not continue to fund endless assessment, reporting and behaviour support cycles that do not translate into more freedom, more safety, more communication, more participation or a better life for the participant.

Core supports cannot be kept artificially low by over-relying on allied health

There is a particular problem where participants receive inadequate core support, and then allied health is used to try to make that inadequate level of core support appear workable.

For a participant with significant intellectual disability, Level 3 autism and behaviours of concern, therapy and behaviour support cannot replace hands-on support. A report cannot shower a person. A behaviour support plan cannot safely support someone through distress in the community. An assessment cannot provide overnight supervision. A recommendation cannot prevent ageing parents from burning out.

Allied health should support the core support model. It should not be used as a substitute for it.

The Bill must ensure that decision-makers cannot reduce or refuse core supports on the basis that allied health can “build capacity” where the participant’s disability means ongoing support will still be required. Capacity building is important, but it must be realistic. For some participants, the goal is not independence in the ordinary sense. The goal is safer support, reduced distress, better communication, fewer restrictive practices, more meaningful participation and protection of the family system from collapse.

Behaviours of concern require skilled, funded support — not wishful thinking.

Behaviours of concern are often spoken about as though they are simply a matter of better plans, better language or more positive attitudes. In reality, they require skilled, consistent, experienced support.

When behaviours of concern are serious, support workers need to understand communication, escalation patterns, sensory needs, trauma, environmental triggers, dignity of risk, de escalation, personal care, community safety and worker safety. They need time to build trust and they need to be paid properly for complex work.

Underfunding high-intensity support does not reduce risk. It increases it.

It leads to inexperienced staff, high turnover, family burnout, police involvement, service breakdown, injury, restrictive practice, and eventually emergency accommodation or crisis responses that cost far more than properly funding the person in the first place.

The Bill should not allow sustainability to be achieved by reducing support to people with the highest needs. These participants are exactly who the NDIS was designed for.

Recommendations

We ask the Committee to recommend amendments or safeguards to ensure the Bill does not further disadvantage participants with significant intellectual disability, Level 3 autism and behaviours of concern.

In particular, we recommend that:

Any consideration of informal supports must include a mandatory assessment of carer age, health, sustainability, financial impact, relationship strain and the length of time the family has already provided unpaid care.
Ageing parents must not be treated as an ongoing substitute for funded supports, particularly where the participant requires 24-hour or high-intensity support.
Decision-makers must not rely on day services, SIL or other service models unless those services are actually available, appropriate, safe and capable of supporting the participant’s disability-related needs.
Where services have previously failed or exited a participant because of behaviours of concern, that history must be treated as evidence of the need for more specialised support, not as evidence that the participant should simply try again.

The Bill must protect access to sufficient core supports for participants with lifelong support needs and must not allow allied health or capacity building to be used as a substitute for hands-on support.
Behaviour support and allied health providers should be subject to stronger outcome- based accountability, particularly where they charge high rates and hold significant influence over participant plans.
Behaviour support should be measured by practical improvements in the participant’s life, including reduced distress, improved communication, reduced restrictive practices, safer support, increased participation, and improved family and workforce sustainability.
Participants with significant intellectual disability, Level 3 autism and behaviours of concern should have access to properly funded, skilled support workers, rather than families being forced to underpay workers or rely on unsuitable staff.
The concept of Scheme sustainability must include the sustainability of families, workers and participants, not only the financial sustainability of the Commonwealth budget.
Any reform aimed at fraud, misuse or poor value must also address poor-quality professional practice and repeated high-cost intervention that does not improve participant outcomes.

Conclusion

The NDIS was created for people like our daughter.

She is an adult woman in her 30s with significant intellectual disability, Level 3 autism and behaviours of concern. She is still living a life more like a teenager than an adult because the support system around her has never been funded or structured properly enough to allow anything else.

We are in our late 60s. We should not still be fighting every day to hold together a support arrangement that the Scheme itself should have made safe, stable and sustainable years ago.

If the Bill is truly about securing the NDIS for future generations, then it must secure it for the participants with the most profound and lifelong support needs. It must not make their families carry more. It must not push people back into services that have already failed them. It must not confuse cheap with sustainable. It must not treat allied health reports as a replacement for real support. And it must not call a system successful while a disabled adult’s life remains small, restricted and dependent on ageing parents who have already given everything.

The NDIS must be protected. But it must be protected as a disability rights scheme, not reduced into a budget control mechanism that survives by exhausting the very families it was meant to support.

Thank you for considering our submission.

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