Dear Ministers,
I am writing to you not simply as the mother of a NDIS participant, but as the mother of a little boy whose disability has shaped every aspect of our family’s life for the past decade.
Over that time, I have advocated not only for my own child, but for broader improvements to the disability sector, including contributing to the Senate Inquiry – Epilepsy in Australia. I have always believed that meaningful reform begins by sharing lived experience.
I have copied our local Federal Member, Ministers, Shadow Ministers and Members of Parliament whose portfolios intersect with disability, health, education and carers, together with the National Disability Insurance Agency, ’s NDIS Planner, our Support Coordinator and other key stakeholders involved in ’s care. The issues raised in this letter extend well beyond a single planning meeting or a single planner. They reflect systemic issues that I believe are unnecessarily harming families across Australia. My hope is that by sharing our lived experience more broadly, it will contribute to meaningful discussion and lasting reform.
is eleven years old and lives with complex disability. He has Autism Spectrum Disorder Level 3 (Pathological Demand Avoidance profile), epilepsy, ADHD, Intellectual Disability and a Language Disorder. He requires 24 hour support and is supported by a multidisciplinary team of approximately ten support workers, together with allied health professionals and medical specialists. His current level of support has only been achieved after years of advocacy, repeated reassessments and overwhelming clinical evidence demonstrating the extent of his lifelong disability.
Following our planning meeting earlier this week, I felt compelled to write because I left feeling more traumatised than supported.
It became apparent very early in the meeting that the planner had not had sufficient opportunity, or perhaps sufficient expectation, to properly familiarise herself with ’s circumstances before speaking with us. Regardless of the reason, the outcome was that we were once again required to explain years of medical history and justify permanent disabilities that have already been extensively evidenced.
As parents of children with lifelong disabilities, we are repeatedly required to relive some of the most traumatic experiences of our lives for every new planner, assessor or delegate. Each meeting requires us to justify why our child continues to need support despite diagnoses that will never improve.
This process is not simply inconvenient.
It is psychologically damaging.
I have watched my son appear lifeless in my arms while teams of doctors prepared to resuscitate him. I have spent years living with the fear that each seizure could be the one that takes his life. Those experiences do not become easier simply because time has passed. Yet every planning meeting requires parents like me to revisit those memories in order to prove that our children still deserve support.
During the meeting I was told that “the NDIS does not fund school hours” and questioned about whether ’s funding was being used for its intended purpose.
Rather than feeling listened to, I felt as though I was being treated as someone attempting to misuse public funds.
Nothing could be further from the truth.
I am not asking for luxuries.
I am asking for support so my son can safely eat, attend school where possible, receive personal care and live with dignity. I am asking for support that allows me to work, sleep and continue caring for him safely.
Another aspect that is often overlooked is the financial impact on family carers.
Although I am ’s primary carer and coordinate every aspect of his care, I am not eligible for the Carer Payment because spends five nights each fortnight with his father. Despite this shared care arrangement, I remain responsible for coordinating his medical appointments, therapies, NDIS supports, support worker team, school engagement, specialist reports, equipment, behaviour support, risk management and the ongoing advocacy required simply to maintain his essential services.
The reality is that the responsibility of caring for a child with profound disability does not reduce by thirty-six per cent simply because they spend five nights each fortnight elsewhere. The planning, administration, clinical coordination and emotional burden continue every single day. Yet families in this position are often excluded from financial assistance while simultaneously being expected to absorb an extraordinary level of unpaid work.
Although ’s current NDIS plan funds the support workers required to keep him safe, it does not fund the financial consequences of living with profound disability.
Over the years we have replaced televisions destroyed during behavioural incidents, repaired damage to our home, managed repeated insurance claims and now face insurance premiums that are becoming increasingly unsustainable. These are not extraordinary expenses – they are the hidden costs of disability that families quietly absorb because there is nowhere else to turn.
When discussions focus solely on the cost of a NDIS plan, they overlook the substantial financial contribution families continue to make every day simply to keep their loved ones safe at home.
However, the hidden costs of disability extend well beyond finances.
Another consequence that is rarely acknowledged is the impact disability has on siblings.
When was born, his sister was only three years old. Throughout her childhood she has grown up alongside ambulances, emergency hospital admissions, seizures, behavioural incidents and the constant demands of caring for a brother with profound and complex disability. During the years where we did not have adequate supports, she naturally stepped into a caring role that no child should ever be expected to carry.
Over the years, numerous professionals have reminded me that is not her responsibility – that he is mine. They are absolutely right. Yet when appropriate supports are unavailable, there is often no alternative. Families simply do what they must to survive and siblings quietly fill the gaps.
Today, at fourteen years of age, she continues to experience the consequences of disability. Like many siblings of children with complex needs, she has missed opportunities, social events and extracurricular activities because our family’s capacity has been consumed by meeting ’s essential needs. She has not been able to consistently participate in the activities she loves, including football, not because of a lack of willingness or commitment, but because disability affects every aspect of family life.
She is not alone.
Across Australia there are thousands of brothers and sisters whose childhoods are shaped by disability – not because they resent their sibling, but because disability impacts the entire family. Their sacrifices are rarely recognised, yet they quietly become some of the greatest informal supports our system relies upon.
When we talk about the cost of disability, we should not only consider the dollars spent through the NDIS. We should also recognise the opportunities, careers, financial security, mental health and childhood experiences quietly sacrificed by families every single day.
There was also discussion during the meeting about ensuring the Scheme remains sustainable for future generations.
I absolutely agree that sustainability matters.
However, I respectfully suggest that families living with profound disability are not the reason the Scheme is under pressure.
Families like mine spend years fighting not to gain an advantage, but simply to secure the supports that independent clinical evidence has repeatedly confirmed are reasonable and necessary. We are not asking for more than we need – we are asking for enough to survive.
One of the greatest challenges I have experienced throughout this journey is that the systems responsible for supporting children like are often designed to fit people into categories rather than understand them as whole human beings.
Health focuses on epilepsy.
Education focuses on learning.
The NDIS focuses on disability.
Mental health services focus on behaviour.
Each system works within its own legislative framework, yet does not experience his life in separate pieces. He experiences all of his disabilities, every minute of every day. His autism influences how he experiences epilepsy. His language disorder affects how he communicates pain and distress. His intellectual disability shapes how he learns. His ADHD affects his regulation. None of these conditions exists in isolation and it is impossible to say that one disability impacts him more than another because together they define the complexity of his daily life.
Too often, families are left trying to stitch together fragmented systems that each see only one part of the child, while parents are expected to advocate for the whole person.
If the Government wishes to improve the sustainability of the Scheme, greater scrutiny should be directed toward providers who exploit participants through excessive charging, poor-quality services and profit-driven business models. Families should not bear the burden of proving, year after year, that their child still cannot perform basic activities of daily living.
The emotional toll on carers is immense.
For eight years I effectively provided the equivalent of around-the-clock care before adequate funding was finally approved. I did this while escaping family violence, managing my own trauma, raising another child with additional needs and trying to remain employed.
Today there are approximately ten support workers sharing that workload.
Imagine being told that seven of those ten employees could no longer come to work tomorrow.
One person would suddenly be expected to absorb that workload without additional time, pay or support.
That is exactly what happens to parents every time funding is reduced or questioned.
Society would never expect an employee to work 20 hour shifts indefinitely.
Yet that expectation is routinely placed upon parents – particularly mothers caring for children with complex disabilities.
The current planning process compounds this burden by requiring parents to continually defend themselves rather than recognising the expertise they have developed after years of providing care.
I believe there are several reforms that could significantly improve both participant experience and planner decision-making:
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Require planners to thoroughly review participant information before planning meetings.
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Introduce mandatory trauma-informed training for planners and delegates.
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Reduce repeated reassessments for participants with permanent, lifelong disabilities.
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Improve disability-specific training, particularly regarding complex epilepsy, neurological conditions and autism.
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Recognise the cumulative psychological impact experienced by parents and carers who repeatedly relive traumatic events throughout planning and review processes.
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Better recognise the hidden impacts of disability on carers, siblings and the broader family unit when developing policy and planning processes.
Most importantly, I ask that the planning process returns its focus to the participant.
is not a collection of diagnoses, reports or funding categories. He is a little boy. He is a whole person and no single disability impacts his life more than another because every one of his disabilities interacts with the others to shape the life he lives every single day.
Children with disability are not responsible for the financial pressures facing the NDIS.
They did not choose to be born with complex needs.
The success of the NDIS should not be measured solely by the number of plans it funds or the dollars it spends. It should also be measured by whether participants and their families leave interactions with the Agency feeling respected, heard and supported – not feeling as though years of lived experience, specialist advice and daily reality have been questioned or disregarded.
On this occasion, we left feeling distrusted instead.
I also believe we should continue to ask who is involved in designing the systems that make life changing decisions for people with disability. Legislative knowledge and policy expertise are essential, but so too is genuine understanding of disability and the realities of living it every day. Lived experience should not be seen as secondary to professional expertise – it is expertise. Families who have spent years coordinating medical care, implementing therapy recommendations, managing risk, navigating education and health systems and supporting every aspect of their child’s life possess knowledge that cannot be fully captured in reports, assessments or funding categories.
That knowledge should be recognised as an asset to the planning process, not something that must be repeatedly defended.
Families are not asking for special treatment – we are asking for the opportunity to keep our children safe, healthy and included in their communities.
Australia should be judged by how it treats those who are least able to advocate for themselves.
Attached is a chronology of ’s medical history, disability progression and NDIS journey. I hope it demonstrates that his current supports are not the result of seeking more from the Scheme, but of years of advocacy to ensure that his permanent and lifelong needs are accurately recognised.
I also hope this letter encourages a broader conversation about the true cost of disability. While the NDIS funds supports for participants, families continue to carry significant emotional, financial and practical responsibilities that are largely invisible. Disability does not affect one individual alone – it affects entire families and those impacts deserve to be recognised in the way we design and deliver support systems.
This letter is not a request for additional funding. ’s current plan already recognises his needs. It is a request for a planning system that treats families with dignity, recognises the expertise gained through lived experience and acknowledges the true cost of disability beyond what is reflected in an NDIS budget.
I would welcome the opportunity for this matter to be reviewed and for my family’s experience to inform future improvements to the planning process.
I sincerely hope that by sharing our story, no other family will have to repeatedly relive the worst moments of their lives simply to prove that their child’s permanent disabilities still exist.
Thank you for your time and consideration.
Warm Regards,
Attachments
1. Chronology of 's Medical History, Disability Needs and NDIS Journey
2. Senate Inquiry Submission – Epilepsy in Australia