Submission to the Senate Inquiry

Disability Cannot Be Reduced to a Funding Formula

To Whom It May Concern,

For many disabled Australians, ordinary life is already a full-time exercise in risk assessment, survival and system navigation.

Most politicians and policymakers making these rushed NDIS decisions will never have to live the kinds of daily calculations many disabled Australians quietly perform simply to participate in ordinary life.

Most people do not have to assess whether showering is physically safe that day. They do not have to calculate whether grocery shopping could end in injury, collapse or an ambulance call. They do not have to weigh up whether attending a medical appointment will leave them bedridden for days afterwards. They do not have to coordinate support simply to access the same basic human experiences other Australians move through freely every single day.

Yet these proposed NDIS reforms increasingly reduce complex human disability into rigid categories, funding formulas and cost calculations that fail to reflect how disability is actually lived.

These proposed reductions to social and community participation supports are deeply concerning, however the broader structural shift occurring underneath these reforms is equally alarming as it moves away from individualised support and lived reality, and toward increasingly inflexible systems, blanket assumptions and narrow functional interpretations imposed upon highly complex human lives.

I say this not only as an NDIS participant, but as somebody who has also worked within the disability sector as a Support Coordinator for almost seven years.

I have firsthand experience navigating these systems professionally, personally and as a carer.

I have seen participants repeatedly forced to prove their disability through expensive reports that are often overlooked or inconsistently applied. I have seen people with complex and fluctuating conditions reduced to paperwork categories that fail to capture the reality of how they function day to day. I have seen carers burn out trying to hold impossible systems together.

And

I have seen vulnerable people deteriorate while fighting systems supposedly designed to support them.

My own permanent disability stems from metallosis. Heavy metal poisoning following hip replacement complications, which caused widespread damage throughout my body and significantly impacted my long-term functioning. I now live with chronic pain, mobility impairment, neurological symptoms, recurrent hip dislocations, PTSD, anxiety, repeated unconscious falls and the ongoing consequences of repeated head trauma from those falls.

My disability does not fit neatly into a single label, and neither do countless other Australians living with overlapping, fluctuating and invisible conditions.

That is precisely why rigid assessment models and broad policy assumptions are so dangerous.

A person may appear “functional” during a short assessment or phone call while paying enormous physical, neurological and psychological consequences afterwards that decision-makers never see. Many disabled Australians have spent a lifetime learning to mask distress, hide pain, compensate for limitations and minimise their needs in order to fit into a world not designed for them. Assessing disability based on what is visible in a brief moment risks overlooking the very struggles people have become most skilled at concealing.

Functioning is not always visible. Survival is not always visible. Exhaustion is not always visible.

At the same time, I am homeschooling and advocating for my neurodivergent daughter while continuing to navigate aged care systems following the death of my father after an extraordinarily traumatic and complex journey through hospital and aged care systems.

Like many Australians, I am part of the “Sandwich Generation” — raising children with one hand, supporting ageing parents with the other, while trying to survive ourselves somewhere in the middle.

This is what many families quietly look like behind closed doors.

Not people exploiting the system.

Exhausted human beings trying to survive increasingly difficult systems while carrying loads most people will never fully see.

And if governments are genuinely serious about addressing waste within the NDIS, the focus should not primarily be falling upon vulnerable participants already struggling to access basic functional support, community connection and dignity.

The far greater issues have long involved inflated provider costs, inconsistent oversight, duplicated administration, systemic inefficiencies and a system that too often ignores the lived reality contained within the very reports participants are repeatedly required to pay for.

Participants did not create those failures.

Yet participants and carers are increasingly being asked to absorb the consequences through reduced flexibility, reduced supports, increased scrutiny and narrower definitions of what disability-related support is considered “reasonable and necessary.”

What these reforms fundamentally fail to understand is that many supports currently being framed as “non-essential” are actually preventative supports.

They are often the thin line preventing complete deterioration — physically, psychologically, socially and financially.

Without these supports, the consequences do not disappear.

They simply become more expensive, more dangerous and more hidden.

And they simply shift elsewhere.

They shift into emergency departments after preventable falls. They shift into mental health systems after prolonged isolation. They shift into increased suicide risk among isolated disabled Australians and exhausted carers. They shift into increased family violence risk as financial pressure, isolation, dependence and carer stress continue to escalate. They shift into family breakdown. They shift into carer burnout. They shift into aged care admissions. They shift into already overwhelmed hospitals and public systems.

This is not sustainable reform.

It is cost shifting disguised as sustainability.

Page 4

The original intent of the NDIS was to move Australians with disability away from isolation, institutionalisation and survival-based existence and toward dignity, autonomy, participation and genuine inclusion within society.

These reforms risk reversing that progress, eroding not only the independence, dignity and participation of disabled Australians, but also placing greater strain on families, carers, friends and communities who are already carrying much of the invisible burden that allows these systems to function.

A society should ultimately be judged by how it treats people when they are vulnerable, disabled, ageing, exhausted or unable to advocate loudly for themselves.

I urge the Government and Senate to reconsider these proposed changes and ensure future reforms uphold the principles the NDIS was originally founded upon — individualised support, functional reality, dignity, flexibility, evidence-based assessment and genuine human participation in society.

Sincerely,

Tracey Perry Victoria, Australia NDIS Participant, Carer, Parent & Former Support Coordinator