Submission 3010 — Name Withheld — NDIS Future Generations Bill | External submission

Submission to the Senate Inquiry into the NDIS Amendment Bill - July 2026

Dear Senate Committee,

I make this submission as a NDIS participant, partner, and mother of two, with one child on the NDIS. We live with significant complex disabilities.

Decades ago, I wrote government commercial policy, considering big picture financial impacts, and balancing cost, risk, social, ethical, community and environmental outcomes, alongside public perception. Beyond that, I worked in large scale commercial settings, delivering multi-million-dollar cost savings, and as a consultant, building process improvement systems and leading transformations, within some of Australia’s top 20 ASX-listed companies.

My 11-year-old daughter and I are both significantly disabled and largely housebound. Many years ago, we were more able-bodied. We now live with a reality unimaginable to most - limited mobility, cognitive

impairment,  significant pain, profound  fatigue, sensory, and multi-system  difficulties.  All with

underlying, lifelong genetic drivers.

NDIS legislation

At times, we have experienced some life-changing benefits the Scheme can deliver.

However, the proposed Bill is simplistic, makes several extreme recommendations, and is solely designed to achieve a participant-focused, NDIS budget cost savings targets of $37.8B. This is superficial in a financial sense, without any regard for the big picture costs. It will fundamentally cause significant, lasting harm to disabled Australians, their families and beyond.

In our experience, many changes outlined within the Bill already seem to be in play - extending to lack of consultation, changes to functional capacity definitions, proof of disability, plan change levers and sweeping plan budget cuts. The real impact on our family has been devastating. In my recommendations, I outline actionable mechanisms which could measurably improve legislative outcomes, in terms of economic and human cost, from a holistic perspective.

My Story

Six years ago, life changed dramatically. I suffered an unexpected heart attack and cardiac arrest lasting 10 minutes. I am very fortunate to be alive. When I woke from my coma, I was no longer the same person.

Cognitively, I’ve lost memories. I can’t process information in real time. I struggle to find words, think clearly, and express myself verbally. Before my cardiac arrest, maths and English always came naturally. At one point, I could not speak, read, write, or simply add. Physically, limited mobility, profound fatigue and ongoing physical limitations are my new normal. My disabilities are largely invisible, but the gap between what people see and what I can do is a gaping chasm. I’ve become a shadow of my former self.

Before my cardiac arrest, I was a busy mum and active partner, had a successful career I loved, I’d volunteered on committees for decades, our family lived life to the fullest. Overnight, the life, the career, the community connections I’d spent decades building disappeared.

Bathing, grooming, walking, learning, working and simply participating in the world are things many people take for granted. For my daughter and I, these are luxuries.

Due to my condition, it took a year to prepare my NDIS application. I was accepted in 2023 and, after a plan review, I eventually received an effective plan. This helped me build capacity and access life changing supports, including a wheelchair and support worker.

Impact of the NDIS Changes 2025

In 2025, my plan was suddenly reduced by 40% without consultation. I lost access to most supports, was not given the opportunity to respond or provide OT evidence, my representative was removed. I heard this was happening to other participants concurrently. With two disabled family members, we could no longer manage or afford to remain in Sydney after moving specifically to access specialist medical care.

My career involved making strategic decisions by balancing efficiency, effectiveness, cost, and risk. Appealing the decision was problematic with the new NDIS approach, any application for change is always prolonged and draining (financially, physically, cognitively, emotionally). We also considered my daughter’s needs, and the continuous requirement to provide a myriad of evidence to add her listed conditions and functional decline, for a much-needed increase in her supports.

With the new NDIS changes financial implications and life impacts, we decided to direct our energy and resources moving to a more affordable, accessible state. It seemed a more practical solution than coming up against NDIS bureaucracy, for now. Within three months we left Sydney.

My Daughter’s Story

My daughter is currently on NDIS for Autism. Since her initial plan, her function has markedly declined, and she is largely housebound, often bedbound, and has been off school for over a year. She has a long list of diagnosis which overlap and interplay to contribute to her incapacitation. Our application to include Dyspraxia (which is generally accepted) and other relevant conditions has been rejected. We have been trying for 18 months to add the conditions, followed all the guidance and have concluded that currently, no amount of evidence will suffice for the NDIS.

I spend the equivalent of a part-time job navigating the NDIS. This takes away from potential niche, part time remote work I might be able to do. But my daughter’s health is my priority.

To support my daughter’s application for increase funds based on functional decline, as well as approval to add additional conditions, we submitted a 60-page FCA based on 28 specialist reports gathered in the past year or so. Her paediatrician repeatedly provided detailed diagnoses and high-quality letters. I included a 17-page document of all the Medicare appointments she had attended within the past 12 months, years of treatments she has undertaken, listed all my caregiving duties over several pages.

She is largely housebound with limited capacity. She has done as many treatments as is humanly possible. Her additional conditions were rejected, due to lack of evidence and requests for the Paediatrician to outline how she came to the diagnosis. Her Autism plan was reduced and limited to three stated supports.

My daughter is left functionally incapacitated, dealing with constant, ongoing, multisystem symptoms, requiring a significant level of home-based care and capacity building supports. She is now left with almost no support despite her significant level of disability. The cost of support she needs is beyond our means. After the decision was made, I lost the ability to speak. I am heartbroken and devastated for my daughter, and I feel helpless about how we can help her to thrive as best she can. She deserves better.

NDIS has a history of operating through delay tactics, changing rules, forcing families towards burnout, and putting pressure on the medical system to repeatedly justify itself, blowing out Medicare costs, and

taking highly skilled niche practitioners away from the work they are supposed to be doing – treating patients.

The Financial Burden

Over the last decade, many circumstances beyond my control have led to financial hardship.

After rent, healthcare is our largest household expense. Conservatively calculated, we have spent over 200k in out-of-pocket medical expenses since 2020, and costs increase every year. We currently spend 50k a year, of which 16k is reimbursed (Medicare, NDIS reimbursements, private health insurance), leaving $34,000 out of pocket, an average of $654 a week.

My partner of 8 years works hard to cover all our family’s medical costs and living expenses. I have no income, other than a small amount of family tax benefit.

Over a decade, the children’s biological father, who is self-employed, has paid 6k in total child support, and owes $50k based on his ‘average income projected salary’. Financial abuse at the time of separation led to us losing our family home, and shared assets became debt.

We have not been able to re-enter the housing market since and have frequently moved rental homes. During Covid, we lost our newly established small business that didn’t qualify for government support.

We have come to realise that small legislative decisions have huge life impacts.

I spend most of my time managing our complex health needs. I have not returned to work since 2020. I can’t accurately predict my cumulative income lost due to disability, or where my career progression may have taken me. But I know the loss has been enormous. Roles I’m often approached for now pay $200–300/hr. If I had capacity, I might be able to work a few hours a week remotely with international companies. Any overseas income could contribute to the Australian economy. But so much of my time is taken up managing disability and navigating broken systems.

A Medical System Unable to Cope with Complexity

Our disability is both complex and profound. We have found the medical system and most health practitioners are not equipped for the level of complexity and often struggle to understand how our conditions interact.

Frameworks rarely exist for overlapping conditions. We often pay expensive costs for private scripts and compounded medicine that doesn’t fit into the system but helps. Medical professionals that can work with complexity, and work collaboratively with us are rare and have long waiting lists. Clinics don’t share records. There is no central medical record system, so we repeat our history at every appointment. We have seen hundreds of medical professionals over the years. Only a few have helped. As I am the only person who has attended all those appointments, the amount of knowledge is too extensive to communicate or have someone brought in to help share care. The medical burden on our family is extreme.

In the past year, my daughter saw 25 doctors and allied health professionals. Medicare funds five allied health visits a year. Often, we have 5-10 medical and allied health appointments every week. No system is in place to support patients with our level of complexity.

We reach our Medicare Safety Net every January or February. We have done so every year since 2020. I know this is not normal, as from then on all reception staff quote the standard refund and apologise when I point out we get more back through our cap, they look embarrassed for what we must be going through.

The Medicare Safety Net helps, but we still need money upfront for appointments. Often my daughter cannot physically get to appointments in person for Medicare rebate requirements and many practitioners do not offer telehealth.

No solutions have been put in place to support people in my daughter’s situation. Many of the initiatives are being rolled out via schools. She has not been well enough to attend school for a year. With adequate support we hope one day she may be well enough to undertake some remote education. Currently, I see no avenues as to where this support will come from.

Issues with the NDIS in Its Current and Proposed Form

This Bill, devised by Treasury as part of the 2026-27 budget, was designed to deliver $37.8B in savings targets over 4 years and initially capping scheme growth.

No work has been done to understand the real impact and cost of this decision. It is essentially a budget target with zero trade off analysis. This is not a strategic or considered approach.

It does not consider balancing cost, risk, social, ethical, community or environmental outcomes. It does not consider broader economic impacts. It does not consider practical whole of system solutions. And most importantly, it does not consider human suffering and loss.

I built a career around measuring value, considering inputs, and delivering sound commercial analysis and fit-for-purpose solutions, reporting only actual captured bottom line savings. The Budget Savings Target approach the government has taken doesn’t consider the wider implications of the Bill.

Most significantly, through the lens of human rights, how does the Bill comply with Australia’s obligations under the UN Convention on the Rights of Persons with Disabilities?

Article 19 - living independently and being included in the community, rather than being isolated or segregated
Article 24 - the right to education, including support to access it, not exclusion when a system can’t accommodate complexity
Article 26 - habilitation and rehabilitation, i.e. the right to services that build capacity
Article 28 - the right to an adequate standard of living and social protection, including access to disability-related services and assistance

When I consider my daughter’s current situation, I cannot see how it meets any of the obligations in the above listed United Nations agreed articles.

When NDIS Works

When I became disabled, at times I struggled to continue. Every morning when I woke up, a wave of grief overcame me, I remembered my situation, and everything I’d lost that I used to take for granted. When my effective NDIS supports were in place it was life changing. I worked closely with my specialised, carefully selected team, and over time I was able to rebuild some capacity and begin contributing again in small ways. These supports have helped me to achieve things I didn’t think where possible. I’m still significantly disabled, and we live in fear that if we ask NDIS to review or change anything, more cuts will be made.

Access and Isolation

Next year my daughter will miss Year 7.

She can barely walk, lives with constant pain and fluctuating symptoms, is isolated and lonely. Without appropriate supports, her world continues to shrink.

A few years ago, she proudly led school tours, won a dance award, and had a small group of close friends she cherished. She is bright, driven, artistic, caring, kind, strong and full of potential.

I have watched her grow so much through this experience, she is brave and handles her pain and symptoms heroically. Everyone she meets notices her sparkle and she leaves a mark. Her health team always describe her as ‘lovely’ and ‘delightful’ and look forward to work with her. She is always engaged and keen to build her capacity and improve her function.

Government policy matters because, for many families like ours, the NDIS is often the difference between hope and complete isolation.

Since we became disabled, most of our friends and some of our family disappeared. I’ve learned disability is confronting and uncomfortable in ways I never understood before. It’s not just physical – it’s loss of identity, opportunity, independence, and community.

Many times, we have reached breaking point, and I’ve genuinely questioned how I could continue. The thing that kept me going was my family. My partner refused to give up on us, his unwavering dedication, love, and support has kept us all going. I don’t know where we would be without him.

The Human and Mortal Cost

When  I first became disabled,  I learned all about my conditions.  I joined a medical and scientific

committee and became a Board member for an organisation advocating for severely disabled people. I was awarded a Disability Leadership scholarship with the Australian Institute of Company Directors. I spoke to politicians. I connected with people all over the world living in situations just like me.

I developed a passion for advocating for severely disabled people and people living with invisible illness, who live with some of the lowest quality of life conditions and are often dismissed and misunderstood. I learned that the most significantly impacted people are the ones who have the most difficult time accessing supports because they often lack resources, access, and the abilities required to obtain supports like NDIS.

In my years in the disabled space, I have known many in the community who have passed away. Some have taken their lives, some have developed conditions like late-stage cancer and not known because they dismissed symptoms, lacked access or were simply dismissed. Many are alone and isolated. Few have supportive partners or access to resources needed to thrive.

Last year I lost a good friend and disability advocate Kathy. She spent all her energy raising awareness

about  significant  disability  and  invisible  illnesses,  writing  letters  to  health  ministers  and

parliamentarians which often went ignored and unanswered. She died advocating and was later found to have had late-stage cancer.

Summary

In summary, I have experienced the discomfort our society can have towards disability. I have also experienced the extraordinary difference that the right support can make.

The NDIS directly impacts the wellbeing and livelihood of around 750,000 Australians and their families. When it works effectively, it does so much more than fund supports.

It restores independence, builds capacity, creates opportunities, opens doors, and expands worlds. It increases productivity within the disabled community and creates jobs, in turn improving the health of the Australian economy. It provides hope for a better life.

People with disability have so much to contribute. We have skills, experience, resilience, and perspectives that enrich our communities. Like others, we want the opportunity to live meaningful lives, participate, contribute, and reach our full potential.

I ask that this Bill is revised considering participants first, as well as the broader functional, social, and economic ecosystem this legislation so clearly impacts.

Government decisions have profound impact. If carefully considered, they can allow people to shine, and make Australia a better place to live for everyone.

Recommendations

I ask the Committee to consider the following:

Establish an independent committee, with disability community representation and independent economic and policy expertise, to properly assess this Bill’s true costs and impacts, including whole-of-economy and human costs beyond reported savings.
Involve people with disability and their families meaningfully in designing these reforms, not only in responding to their outcomes.
Assess functional capacity realistically, accounting for complex, fluctuating and overlapping conditions rather than a single diagnosis or point-in-time assessment. Apply reasonable evidentiary standards, and do not require specialists to justify their own clinical rationale.
Support participants who cannot access school-based or distance education, and those who need help to reduce isolation and connect with community.
Consult participants before plans are written, not after. Provide draft plans and information in writing, in advance, and guarantee the right to an advocate.
Make funding more flexible and responsive to how people actually live with disability, for example, pooled funding across allied health supports rather than rigid line items, and ensure staff have genuine knowledge of participants’ conditions, not just process.
Build better communication support into the Scheme, including a way for participants to record their communication needs and preferences, and clearer pathways for those who cannot easily navigate the Scheme or advocate for themselves.

Final note – this submission took substantial time, energy, and effort to write with many breaks and revisions over several days. All thoughts, opinions, experiences, and conclusions are my own. I used AI

to help me organise ideas within drafts, which I then extensively reviewed and modified in my own voice. AI is itself an example of a life changing accessibility tool for people with cognitive disability.