Difficulty demonstrating disability impacts daily functioning (Participant experience)

Submission to the Senate Community Affairs Legislation Committee

Inquiry into the National Disability Insurance Scheme Amendment (Securing the

NDIS for Future Generations) Bill 2026

Submitted in a personal capacity by a former disability sector practitioner

Introduction

Thank you for the opportunity to provide this submission.

Over approximately seven and a half years, I worked across multiple roles within the disability sector during the implementation and ongoing development of the NDIS. My experience included supporting people to transition from state-funded disability services into the NDIS as a Disability Case Manager, undertaking NDIS planner training, working within the Local Area Coordination environment, providing Support Coordination services and later working as a Disability Consultant within the child protection sector.

These roles gave me a unique perspective across access, planning, implementation, coordination and the interaction between disability, health and other service systems.

I continue to believe the NDIS is one of Australia’s most important social reforms. I have seen firsthand how it can transform lives.

However, I have also seen people struggle to access it, understand it and navigate it.

My submission supports the objective of securing the NDIS for future generations. In my view, sustainability and accessibility must go hand in hand.

The Greatest Challenge is Navigating the System

The greatest barrier I observed was not usually the legislation itself.

The challenge was understanding how to demonstrate disability in a way that aligned with the legislation.

Throughout my career I regularly saw detailed medical reports describing diagnoses, treatment and prognosis but failing to explain how a person’s disability affected their daily functioning.

Many clinicians genuinely wanted to help their patients but had little understanding of how NDIS access criteria differed from traditional medical reporting.

As a result, participants often experienced repeated requests for evidence, delays, additional costs and significant frustration.

Access to the NDIS should not depend on whether someone happens to find a clinician, advocate or former NDIS worker who understands the system.

Learning While Implementing a Major Reform

Early in my career, a senior leader described the NDIS as:

“A plane being built while it was already in the air.”

That description has remained with me and, years later, I still think about it.

It became a bit of a brain stain.

At the time, it helped make sense of what many of us were experiencing. The workforce was passionate and committed, but we were simultaneously learning new legislation, new operational processes, new funding models and new ways of working while supporting people through one of the largest social reforms in Australia’s history.

There was considerable uncertainty. Policies evolved, guidance changed and different parts of the system were often learning as they went.

Many of these challenges were understandable during implementation.

My concern is that some of the issues that were once accepted as part of establishing a new Scheme continue to affect participants today.

A Case That Reinforced My Concerns

A recent experience ultimately cemented my decision never to return to frontline work within the NDIS sector.

I became involved in assisting a woman who has lived with significant disability for approximately thirteen years.

She experiences severe mobility limitations, chronic pain, social isolation, depression and substantial difficulty undertaking everyday activities. She has chairs positioned throughout her home because she cannot move from room to room without stopping to rest.

She struggles to cook, clean, participate in the community and manage many daily tasks independently.

Over a period of approximately three years she made five unsuccessful attempts to access the NDIS.

During that time she engaged with general practitioners, specialists and allied health professionals.

Not one provider, clinician or free advocacy service was able to help her successfully demonstrate her eligibility.

Having worked across disability case management, planner functions, Local Area Coordination and Support Coordination, I could immediately see why previous applications had failed.

The issue was not the absence of disability.

The issue was that nobody had explained her disability in terms of functional capacity and legislative requirements.

In my own time and without payment, I worked alongside her treating professionals to help prepare evidence that accurately described how her disability affected her daily life.

I genuinely believe that without specialist NDIS knowledge she would have had little chance of successfully navigating the process.

At the time of writing, her matter remains unresolved.

What concerns me most is not her individual case.

It is the question it raises.

If a person with significant disability requires assistance from a former NDIS professional volunteering their personal time simply to navigate access, how many other Australians are missing out because they do not have someone with that knowledge available to them?

People Falling Through the Gaps

One of the most confronting aspects of my work was seeing people become lost between service systems.

I observed people moving between disability, health, mental health, housing and justice systems without any clear coordination or accountability.

Some experienced repeated hospital admissions.

Some experienced homelessness.

Some became socially isolated and disconnected from services.

I also met NDIS participants who had little understanding of what the Scheme was, what funding they had received or how to use it effectively.

Funding alone does not create outcomes.

Many people need support to understand and implement their plans.

I also observed people remaining in residential aged care settings where they did not belong, and ageing parents continuing to care for adult children with disability long after those arrangements were sustainable.

The Burden on Participants and Families

Increasingly, I saw participants and families carrying responsibility for gathering evidence, coordinating assessments, understanding legislation and navigating complex processes.

Ironically, the people with the greatest disability are often the least able to undertake these tasks.

Many participants simply do not have the cognitive, psychosocial or functional capacity to manage lengthy application and review processes without support.

Carers are often already overwhelmed.

In some families, disability exists across generations and the expectation that family members can navigate increasingly complex systems is unrealistic.

Delays Have Consequences

The consequences of delays are often discussed as administrative issues.

In reality, they are human issues.

I observed people becoming increasingly anxious, isolated and distressed while waiting for decisions.

I saw people deteriorate physically and emotionally while trying to navigate processes that often felt overwhelming.

For many people, uncertainty becomes part of the disability they are already trying to manage.

Scheme Integrity and Sustainability

My concerns were not limited to access.

I also observed misunderstandings about what NDIS funding could be used for, participants receiving incorrect information and providers exercising significant influence over participants who did not understand their plans.

Most participants and providers acted appropriately.

However, I also became aware of poor practices, misuse of funding and situations where participants appeared to have been misled regarding what could legitimately be claimed.

I also observed increasing complexity around the intersection of disability, trauma, mental health and social disadvantage, particularly in children and young people.

These experiences reinforced the importance of clear eligibility criteria, strong assessment processes, participant education, provider accountability and effective fraud prevention.

Sustainability requires both fair access and strong safeguards.

Why I Left the Sector

Leaving frontline disability work was one of the most difficult professional decisions I have made.

I remained passionate about disability rights and inclusion.

However, I increasingly found myself watching vulnerable people spend extraordinary amounts of time and energy trying to navigate systems that were meant to support them.

I saw participants exhausted by repeated applications.

I saw clinicians wanting to help but not understanding what evidence was required.

I saw families carrying responsibilities far beyond what should reasonably be expected.

Most recently, I saw a woman with significant disability spend years attempting to access support despite engaging multiple professionals.

That experience crystallised something I had been feeling for a long time.

Too many outcomes depend on a person’s ability to navigate complexity rather than their actual level of disability or need.

That is what ultimately led me to leave the sector.

Recommendations

I respectfully recommend:

National education for medical and allied health professionals regarding NDIS evidence requirements.
Standardised functional evidence templates aligned with the legislation.
Greater investment in independent advocacy and navigation support.
Improved consistency in decision-making and communications.
Clearer responsibilities between disability, health, mental health, housing, aged care and other systems.
Better support for participants to understand and implement approved plans.
Defined pathways for people with significant disability who do not meet NDIS access criteria.
Continued investment in provider quality, participant education, fraud prevention and market oversight.

Closing

The NDIS has changed many lives for the better.

This submission is not intended as criticism of the Scheme itself. It reflects the perspective of someone who believed deeply in its purpose, spent years working within it and wants to see it succeed.

My greatest concern is that access to life-changing support should never depend on chance encounters with someone who understands the system well enough to explain it.

A scheme designed for people with significant disability must be accessible to those people.

My hope is that future reforms strengthen both the sustainability of the NDIS and the ability of eligible Australians to access and use it without requiring specialist knowledge, extraordinary persistence or good fortune.

Thank you for the opportunity to contribute to this inquiry.