NDIA Accountability Project

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Impact of NDIS reforms on a woman with multiple complex physical disabilities (Participant experience)

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Submission 29

Tanya Dupagne OAM

16/05/2026

Committee Secretary

Senate Standing Committees on Community Affairs

PO Box 6100

Parliament House

Canberra ACT 2600

Dear Committee Members,

Re: National Disability Insurance Scheme Amendment (Securing the NDIS for Future

Generations) Bill 2026

Thank you for the opportunity to provide feedback on the proposed legislation above. In this submission, I will:

  • provide background on my experience as both an NDIS participant and long-term community sector professional;

  • outline my concerns regarding the proposed reforms;

  • and offer alternative, practical solutions to improve the sustainability of the NDIS without placing vulnerable Australians at risk.

Background

I am a 44-year-old woman living in Perth, Western Australia. Prior to becoming disabled, I was internationally recognised for developing and leading programs supporting vulnerable children and communities, including those affected by trauma and torture.

I have spent more than 20 years working in the charity and not-for-profit sector, much of it in developing countries, where I learned how to deliver strong outcomes with limited resources while maintaining dignity, compassion and human connection.

My work has been recognised through a number of honours and awards, including:

  • Medal of the Order of Australia (OAM);
  • AgriFutures Australian Rural Woman of the Year;
  • Churchill Fellowship;
  • Westpac Scholars Fellowship;
  • Honorary Doctorate from Edith Cowan University for contribution to community development.

I worked and paid taxes continuously from the age of 13 until my disability forced me to stop working. I have been permanently disabled since 2019 and live with multiple complex physical disabilities affecting nearly every aspect of my daily functioning.

Submission 29

My permanent disability status and reduced functional capacity have been independently assessed and confirmed by:

  • Centrelink;

  • Total and Permanent Disability insurance providers;

  • my GP;

  • multiple medical specialists, including a Urological Surgeon, Neurologist, Cardiologist, Interventional Cardiologist and Sleep Specialist;

  • and allied health professionals including my Occupational Therapist, Physiotherapist and Podiatrist.

My Experience with the NDIS I have been an NDIS participant since 2020. In that entire time:

  • I have never met an NDIS staff member in person;
  • I have never had a video appointment with the NDIA;
  • I have never spoken to the same staff member twice;
  • Only once in all the times I have been reassessed had the assessor actually read the reports I had submitted.

Despite living with multiple serious and permanent disabilities, I was informed during my access process that I could only nominate one disability because “the computer says you’re only allowed to have one disability.”

I remain deeply grateful for the support I currently receive through the NDIS. Those supports allow me to maintain independence, remain connected to the community and continue contributing meaningfully to society despite significant disability.

Since becoming disabled myself, I have also been appointed to advisory and governance groups - including a major Western Australian hospital advisory council - to provide lived experience insight into how systems can operate more effectively and humanely.

It is from both professional and personal experience that I provide the following comments on the proposed reforms.

Specifically, I wish to address:

  • proposed cuts to community access and in-home support;
  • assessment protocols and automated functional scoring tools;
  • expanded ministerial powers;
  • fraud prevention measures;
  • alternative options for reducing NDIS expenditure.

CUTS TO COMMUNITY ACCESS AND IN-HOME SUPPORT

I currently receive approximately 25 hours of support worker assistance per week. These hours are carefully allocated to essential daily tasks that allow me to function safely and independently. There is no excess funding within my plan.

The proposed reforms include:

  • a 50% reduction to community access supports; and
  • a 10% reduction to in-home supports. These cuts would have severe consequences not only for participants, but also for the broader Australian healthcare system.

Submission 29

Community Access Supports

My support workers currently assist me with:

  • attending GP and specialist appointments;

  • attending medical testing including MRIs, ultrasounds and x-rays;

  • transport and safe vehicle transfers;

  • safely navigating public environments, including road crossings;

  • accessing public bathrooms;

  • responding to medical emergencies should I suddenly lose consciousness;

  • shopping for essential items;

  • attending hydrotherapy necessary to maintain mobility;

  • and participating in community advisory positions representing people with disability. If these cuts proceed:

  • I would only be able to leave my home half as often as I currently do;

  • I would be forced to choose between essential specialist appointments;

  • my health would deteriorate more rapidly;

  • costs would ultimately shift to hospitals, Medicare, pharmaceuticals and crisis care. These proposed changes risk confining many disabled Australians to their homes. In my case, a 50% reduction in community supports would likely reduce my ability to leave home to approximately half a day per week.

During COVID-19, governments rightly recognised the mental health impacts of prolonged isolation. Yet this proposal risks creating permanent isolation for many Australians with disability.

In-Home Supports

My in-home supports assist with:

  • showering;
  • cleaning;
  • laundry;
  • gardening;
  • changing bed linen;
  • meal preparation;
  • and medication management. Without these supports, I would be forced to make impossible decisions between basic hygiene, assistance with self care, nutrition, infection prevention and pressure sore management.

The likely outcomes include:

  • increased infections;
  • increased hospital admissions;
  • medication errors;
  • poorer nutrition;
  • and eventual loss of independent living. At 44 years old, I am currently able to remain safely in my own home with modest support.

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If those supports are significantly reduced, the long-term cost of supported accommodation or residential care would far exceed the cost of maintaining my independence now.

ASSESSMENT PROTOCOLS AND AUTOMATED FUNCTIONAL SCORING

Last year my Occupational Therapist attempted to complete the ICAN assessment tool with me. We stopped approximately 30 minutes into the process because the assessment questions did not accurately reflect my disabilities or functional limitations. Instead, my therapist relied on a range of recognised clinical assessment tools more suited to my condition.

A standardised “tick-box” assessment cannot accurately capture the complexity of many disabilities, particularly fluctuating, neurological or multi-system illnesses. Assessing a young child with autism and an adult with complex physical disabilities using largely identical assessment frameworks is unlikely to produce fair or clinically accurate outcomes.

The assessment process is also lengthy and cognitively demanding. Many participants living with fatigue, pain, neurological impairment or brain fog would struggle to complete it effectively.

I question how a largely automated assessment process can reasonably override the opinions of treating specialists and allied health professionals who work with participants continuously and understand their conditions in depth. I also question how our functional capacity can be assessed without someone coming to see our functional capacity in person (or even via video).

A more accurate and efficient approach would be to:

  • place greater weight on treating practitioner recommendations;
  • allow multidisciplinary evidence;
  • and streamline reporting requirements rather than replacing clinical judgement with scoring systems.

Importantly, the Bill currently lacks transparency regarding how ICAN scores will translate into funding outcomes.

MINISTERIAL POWERS

The Bill grants significant powers to the Minister, including the ability to:

  • alter funded supports;
  • reduce pricing caps;
  • redefine funding categories;
  • tighten eligibility;
  • modify assessment processes;
  • and implement operational changes through ministerial rules rather than parliamentary legislation.

This is deeply concerning.

Neither the current Minister for Health nor the current NDIS Minister holds formal clinical, medical or allied health qualifications.

Allowing substantial changes to disability supports without full parliamentary scrutiny:

  • reduces accountability;
  • limits public consultation;
  • and creates instability for participants whose lives depend on these systems.

Submission 29

Participants already live with enormous uncertainty due to disability itself. The rules governing our essential supports should not become equally unstable.

I ask Committee Members to consider this from the participant perspective: How would you feel if a single individual could alter your salary, entitlements and workplace conditions at any time without parliamentary debate or oversight?

FRAUD PREVENTION

I strongly support genuine efforts to reduce fraud and provider exploitation within the NDIS. As a participant, I have personally witnessed providers taking advantage of vulnerable people.

However, registration requirements must remain proportionate. Independent support workers should not face the same administrative and financial burden as large corporate providers. Excessive compliance costs may drive good workers out of the sector and worsen workforce shortages.

ALTERNATIVE SOLUTIONS TO REDUCE NDIS COSTS

I acknowledge the importance of ensuring the long-term sustainability of the NDIS. However, there are more balanced and practical alternatives available that would reduce costs without placing participants at risk.

These include:

  • Markup limits on disability equipment – instead of the huge markups on equipment currently, cap it to a specific number (say 40%) of cost price. This would limit “NDIS inflation” that patients see in disability shops;

  • Don’t require extensive and costly reports for common sense equipment purchases. NDIS are already paying service providers large amounts of money per hour to see us. Trust their judgement – they see us all the time and know what we need. Instead of expensive reports, for amounts under $1500 require one simple signature of a qualified professional (OT, physio, GP, specialist, podiatrist etc), and between $1500 - $5000 require two, as long as it fits within the participant budget. It would take two seconds of provider time, ensures some accountability and much needed equipment is approved by those who know us rather than strangers. There aren’t a lot of people out there abusing the system to get a shower chair, walker or toilet commode. They aren’t highly sought after items in the general public and nobody wants them unless they need them;

  • You need to prove you have a permanent disability to get onto NDIS. Stop making us reprove it every year. It’s still permanent, and collecting thousands of dollars in reports isn’t going to change that. If someone has a leg amputated, it will remain amputated. I know someone who does have to prove each year their amputated leg hasn’t grown back;

  • Give participants an option – reviews annually or reviews every five years. This allows for those who aren’t stable to have annual assessments. For a lot of us though, we are stable and our situation isn’t changing. Give us the choice for a five year assessment, with an option to reassess earlier if there is significant changes in circumstance. This would take away uncertainty and dramatically cut costs;

  • Don’t require expensive reports if you aren’t going to read them;

Submission 29

  • Allow the extensively qualified providers you are funding large amounts of money to the opportunity to make decisions on our plan reviews instead of someone we’ve never met. An algorithm entered into a computer by someone who has never met us is not an accurate way to assess us. Trust the opinions and recommendation of our qualified doctors and allied health professionals. That’s what you are paying them for;

  • Target fraud and providers first, rather than some of the most vulnerable people in Australia, who have disabilities through no fault of their own;

  • Involve people with lived experience in decision making – and actually listen to them. We are the ones navigating this system every day. We see where it breaks and we feel the consequences when it does.

CONCLUSION

People living with serious disability already live with enormous uncertainty. We do not know when symptoms may worsen, when emergency hospitalisation may occur or when additional support may suddenly become necessary.

What should not be uncertain is whether essential supports will continue to exist. I respectfully invite the Minister for the NDIS, the Minister for Health, Members of Parliament and NDIA executives to spend a day with me to better understand the realities of living with complex disability and the potential consequences these reforms may have for participants across Australia.

For many people, these changes are not abstract policy decisions. They are decisions that may determine whether people remain safe, healthy, independent - or whether they experience preventable harm, institutionalisation or medical crisis.

People with disabilities shouldn’t have to fight a system just to access basic care. We are already fighting enough.

The NDIS doesn’t need more opinions from the outside. It needs to start listening to the people inside it.

Thank you for taking the time to consider my submission.

Yours sincerely

Tanya Dupagne OAM

HonDUniv (ECowan), CF, B Comm.