Building Confidence to Strengthen Trust
A Participant and Health Practitioner’s Contribution to the Future of the
National Disability Insurance Scheme
Submitted by
Foreword
The National Disability Insurance Scheme (NDIS) is one of Australia’s most significant social reforms. It has transformed the lives of hundreds of thousands of Australians by supporting greater independence, participation and opportunity for people living with disability.
I write this contribution as both an NDIS participant and a health practitioner. These two perspectives have provided me with a unique understanding of the Scheme’s strengths, while also highlighting areas where meaningful reform can improve participant outcomes and strengthen public confidence.
I support the long-term sustainability of the NDIS. I recognise that reform is necessary to ensure the Scheme remains available for future generations. However, I believe the success of those reforms will depend not only on achieving financial sustainability, but also on preserving the confidence of the people the Scheme was established to support.
This contribution is therefore not written in opposition to reform. It is written in support of reform that strengthens transparency, accountability, participant-centred decision-making and the principles of choice and control that have guided the NDIS since its inception.
Throughout this contribution I draw upon my lived experience of navigating the NDIS while living with a chronic neurological condition, together with my professional experience working alongside the disability sector. My intention is to respectfully contribute practical observations and recommendations that may assist in strengthening the Scheme for current and future participants.
Executive Summary
This contribution is founded on one central principle:
Public confidence is the foundation upon which public trust is built.
The National Disability Insurance Scheme has fundamentally improved the lives of many Australians, including my own. It has enabled people living with disability to pursue greater independence, participate more fully in their communities and access supports that improve quality of life.
As both an NDIS participant and a health practitioner, I strongly support reforms that improve the Scheme’s long-term sustainability. However, sustainability should not be considered solely in financial terms. A sustainable Scheme must also maintain participant confidence through transparent decision-making, administrative simplicity, procedural fairness and genuine partnership with people living with disability.
My experience demonstrates that even participants with professional health knowledge can find the Scheme difficult to understand. This raises an important policy question: if someone with experience navigating complex health systems finds the NDIS challenging, how accessible is it for participants living with intellectual disability, acquired brain injury, psychosocial disability, communication difficulties or those without strong advocacy and family support?
This contribution recommends reforms that:
simplify administrative processes; improve transparency and communication; recognise the fluctuating nature of many lifelong disabilities; preserve meaningful access to independent review; reduce unnecessary administrative burden on participants and clinicians; implement lessons from the Disability Royal Commission; and strengthen public confidence in the institutions responsible for administering the NDIS. These recommendations are offered respectfully and constructively with the shared goal of ensuring that the NDIS remains sustainable, trusted and centred on the dignity of the people it exists to support.
My Perspective: An NDIS Participant and
Health Practitioner
My perspective is shaped by two complementary experiences.
The first is my lived experience as a person living with multiple sclerosis and participating in the National Disability Insurance Scheme.
The second is my professional experience as a health practitioner working alongside people living with disability and the systems designed to support them.
These experiences have given me an appreciation of both the extraordinary strengths of the NDIS and the practical challenges participants often encounter when attempting to navigate an increasingly complex system.
When I first entered the NDIS, I chose to self-manage my plan because I believed I had the skills and capacity to do so. I also believed that avoiding unnecessary administrative costs would allow more funding to be directed towards the supports intended to improve my independence and wellbeing.
Submitting claims and paying providers through the participant portal has generally been straightforward. However, understanding how funding decisions were made, interpreting plan budgets and navigating the broader administrative framework proved far more complex than I had anticipated.
Despite my professional background as a health practitioner, I eventually engaged a Support Coordinator simply to assist me in understanding and navigating my approved plan. This experience caused me to reflect on a broader question. If someone with professional knowledge of the health system finds the NDIS difficult to navigate, what does this mean for participants who face additional cognitive, communication or psychosocial barriers?
Living with multiple sclerosis has also taught me that disability is rarely static. Functional capacity can fluctuate significantly over time. Effective support therefore requires systems that are sufficiently flexible to respond to changing needs rather than relying solely on assessments completed months or years earlier.
These experiences have reinforced my belief that the greatest opportunities for reform lie not in reducing participant protections but in improving transparency, simplifying administration and strengthening participant understanding of the Scheme.
Why Navigating the NDIS Has Become
Increasingly Complex
The NDIS was designed to provide people living with disability greater choice and control over the supports they receive. Choice and control remain among the Scheme’s greatest strengths. However, these principles can only be realised when participants understand the systems through which those choices are exercised.
Throughout my experience I have encountered several areas where administrative complexity has created unnecessary barriers.
These include understanding funding allocations, interpreting planning decisions, accessing clear financial information, responding to changing plan arrangements and reconciling information contained within planning documentation and the participant portal.
As my disability has progressed, my support needs have also changed. Like many participants living with chronic and progressive conditions, maintaining functional capacity requires timely access to allied health, psychology and other evidence-based supports. When plans continue for extended periods without comprehensive review, they may no longer reflect a participant’s current circumstances or therapeutic needs.
These experiences are not simply administrative inconveniences. They have practical consequences for participant wellbeing, clinical decision making and the efficient use of public resources.
Reducing unnecessary complexity would improve participant confidence while allowing more Scheme resources to be directed towards direct supports rather than administrative processes.
Protecting Choice, Control and Independent
Review
Choice and control remain the defining principles of the National Disability Insurance Scheme. These principles should continue to guide future legislative reform.
Choice, however, depends upon understanding.
Control depends upon confidence.
Participants cannot exercise genuine choice if they do not understand how decisions have been reached or how their plans operate.
Similarly, confidence is strengthened when participants know that independent review mechanisms exist to ensure decisions can be reconsidered where appropriate.
Maintaining accessible independent merits review is therefore not simply a legal safeguard. It is an important mechanism for maintaining public confidence in the fairness, transparency and accountability of government decision-making.
The recommendations of the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability reinforce these principles by emphasising human rights, participant-centred decision making, transparency, accountability and meaningful participation by people living with disability in the design of systems that affect their lives.
Future reforms provide an opportunity to strengthen—not weaken—these foundations.
Building Confidence to Strengthen Trust
Throughout this contribution one theme has consistently emerged.
The long-term success of the National Disability Insurance Scheme depends not only on financial sustainability but also on maintaining public confidence in the institutions responsible for its governance.
Confidence is built when decisions are transparent.
Confidence is built when participants understand their plans.
Confidence is built when evidence is respected.
Confidence is built when independent review remains available.
Confidence is built when governments listen to the lived experience of the people they serve.
Over time, confidence becomes trust.
Strong public institutions do not ask for trust; they earn it through fairness, accountability and openness.
The National Disability Insurance Scheme is one of Australia’s most significant public institutions. Its future success will therefore be measured not only by responsible stewardship of public resources, but by whether
Australians living with disability continue to have confidence that the Scheme reflects the values upon which it was founded.
I remain optimistic about the future of the NDIS.
I believe Australia has the opportunity to build a Scheme that is financially sustainable, administratively efficient and firmly grounded in dignity, transparency, evidence and genuine partnership with people living with disability.
By strengthening confidence, we strengthen trust.
By strengthening trust, we strengthen the institutions that support Australians at some of the most important moments of their lives.
That, in my respectful view, is the enduring responsibility of all of us who contribute to the future of the National Disability Insurance Scheme.