Submission 1869

Submission to the Senate Inquiry into the National Disability Insurance Scheme Amendment Bill 2026

My name is .

I am the parent of an adult daughter with a permanent disability who relies upon NDIS- funded supports to live safely, participate in the community, maintain employment, and exercise the most basic elements of independence.

I write to express my profound concern regarding the National Disability Insurance Scheme Amendment Bill 2026 and the serious consequences these proposed legislative changes may have for people with permanent disabilities and for the ageing families who support them.

At its core, the NDIS was established as a rights-based scheme. It recognised that disability support is not charity, nor a discretionary welfare measure, but an essential mechanism through which Australians with disability can participate equally in society.

I am concerned that the proposed amendments represent a significant departure from those founding principles.

In particular, the reforms appear to:

• narrow the interpretation of “reasonable and necessary” supports;
• expand powers to reassess, reduce or withdraw supports despite permanent and lifelong impairment;
• prioritise fiscal restraint over demonstrated functional need;
• increase reliance on informal supports and overstretched mainstream services;
• undermine recognition of maintenance supports as legitimate disability supports; and
• shift the NDIS further away from its original human rights framework.

My daughter’s disability is permanent. Her impairments affect executive functioning, emotional regulation, communication, organisation, daily living skills, decision-making, stress tolerance, and her capacity to manage the ordinary responsibilities of daily life.

These impairments are lifelong. They will not resolve through determination, maturity, terapy, or reduced funding.

The stability she currently experiences is not evidence that she requires less support.

It is evidence that the supports are working.

This distinction is critical.

Submission 1869

A deeply troubling feature of recent NDIS reforms has been the apparent assumption that where participants achieve stability, support requirements can be reduced. Such reasoning fundamentally misunderstands the purpose of disability support.

The role of disability support is not to eliminate disability.

The role of disability support is to compensate for permanent impairment, maximise participation, and prevent foreseeable deterioration.

My daughter’s support workers assist with maintaining daily routines, attending appointments, managing domestic responsibilities, navigating complex systems, sustaining employment, maintaining safe housing, and regulating stress and overwhelm that would otherwise compromise her ability to function safely and effectively.

These supports are not luxuries.

They are the practical infrastructure that makes independence possible.

Without them, deterioration occurs rapidly.

Past periods of reduced support and increased stress have resulted in significant declines in daily functioning, missed appointments, administrative breakdown, escalating distress, compromised safety, and reduced capacity to manage essential responsibilities.

The risks associated with reducing supports are not speculative.

They are foreseeable, evidence-based, and well understood.

Clinical evidence already identifies risks including functional regression, medication non-compliance, deterioration in mental health, loss of housing stability, loss of employment, increased social isolation, domestic safety concerns, and escalation to higher-cost crisis interventions.

The Bill appears to place increasing emphasis on the concept of “sustainability.” However, sustainability cannot be measured solely through reductions in expenditure. A system is not sustainable if its apparent savings are achieved by transferring costs onto families, hospitals, housing services, emergency departments, mental health systems, and unpaid carers. That is not sustainability. It is cost shifting. Removing effective supports does not remove disability-related need.

Submission 1869

It merely relocates that need to other systems that are often more expensive, less effective, and already operating under significant strain.

My husband and I continue to provide substantial unpaid support despite the NDIS funding currently in place.

We assist with advocacy, crisis prevention, emotional support, appointments, paperwork, communication across multiple systems, and ongoing monitoring of wellbeing and safety.

The funded supports do not replace family care.

They make family care sustainable.

Without those supports, the burden placed upon us would become overwhelming.

As ageing parents managing our own health conditions, chronic pain, fatigue, and declining physical capacity, we cannot become a substitute disability workforce.

Yet this appears to be the inevitable consequence of reforms that increasingly assume families will absorb the impact of reduced supports.

Responsibility does not disappear when funding is withdrawn.

It is simply transferred.

In practice, that transfer falls disproportionately upon ageing parents, unpaid carers, and women.

The NDIS was established specifically to move Australia away from this model.

These reforms risk taking us backwards.

I am equally concerned by the growing expectation that mainstream services can substitute for disability-specific supports.

They cannot.

Hospitals cannot provide ongoing executive functioning support.

General practitioners cannot provide daily living assistance.

Public mental health services cannot replace practical support, co-regulation, or disability- elated assistance with daily functioning.

Emergency services cannot provide long-term stability.

Ageing parents cannot provide lifelong replacement support for permanent disability.

Submission 1869

The assumption that other systems will absorb unmet need ignores the reality that those systems are already under immense pressure and often lack the expertise, capacity, or mandate to provide the support being withdrawn.

I am particularly concerned about the increased risk of involuntary dependence, segregation, and institutionalisation if participants lose the supports that currently enable them to remain living in the community.

Independence is not achieved by withdrawing support.

For many people with significant disability, independence is achieved through support.

Without appropriate support, people become more dependent, not less.

A person who is forced to rely entirely upon exhausted elderly parents, or who loses housing and enters crisis accommodation because supports have been withdrawn, cannot reasonably be described as living independently.

I believe these reforms risk undermining Australia’s obligations under Article 19 of the UN Convention on the Rights of Persons with Disabilities, which recognises the right of people with disability to live independently and be included in the community.

Independent living is not the absence of support.

Independent living requires support.

The supports currently provided to my daughter are reasonable, necessary, preventative, evidence-based, and cost-effective.

They enable her to remain housed, employed, connected to her community, emotionally stable, and as independent as her disability allows.

Reducing those supports would not increase independence.

It would diminish it.

I therefore urge the Senate to carefully scrutinise these proposed legislative changes and to consider their real-world consequences for people with permanent disabilities and for the ageing families who continue to provide substantial unpaid care.

The question before this Inquiry is not merely how to reduce expenditure.

It is whether Australia remains committed to the principles upon which the NDIS was founded.

A scheme that withdraws support from people with permanent disability because those supports have successfully prevented crisis is not promoting sustainability.

Submission 1869

It is manufacturing future crisis.

The Senate should reject any legislative changes that weaken the rights, independence, safety, and community participation of Australians with disability under the guise of sustainability.

Preventing crisis is not wasteful expenditure.

It is responsible public policy.

This version is more parliamentary in tone, uses stronger policy language (“manufacturing future crisis,” “cost shifting,” “departure from founding principles”), and ends with a clearer call to action directed at the Senate. It reads less as a personal letter and more as evidence submitted to an inquiry while still retaining the power of your family’s experience.