Stop Mandatory NDIS Independent Assessments Brisbane/Gold Coast

The constant silent scream and the painful internal torture.
I need people to understand what the NDIS Bill means when it lands in a home like mine. Because for some people, this is politics. For my family, it is oxygen. It is therapy. It is safety. It is communication. It is toileting. It is feeding. It is behaviour support. It is regulation. It is transport. It is equipment. It is respite from total isolation. It is another adult walking through my door and seeing the life we actually live. It is the difference between my children being supported to live, and my children being left to merely survive. My children’s disabilities did not begin with the NDIS. They were not discovered because of the NDIS. They were not created by the NDIS. Meadow was born disabled in November 2011. She was diagnosed in 2013, when she was only 21 months old. Madden was born disabled in June 2013 and was placed on life support at birth. He was diagnosed in 2015. That is the reality my family has lived from the beginning. Not a story created later by funding. Not a story created by paperwork. Not a story created because a Scheme existed. My children are not NDIS-created cases. They are not children who suddenly appeared because the NDIS existed. They are not products of overdiagnosis. They are not the result of parents chasing labels. And I need people to understand how cruel that accusation really is. Private genetic testing is not cheap. It is not just done on a whim. It is not something parents seek because they are “chasing labels” to dress up as fashion accessories.
No parent puts themselves through private genetic testing because it is trendy.
No parent pays that kind of money, carries that kind of fear, waits for those kinds of results, and opens themselves up to that kind of heartbreak because they want a label. They do it because they are desperate. They do it because their child is incredibly rare. They do it because Phelan-McDermid syndrome is so rare that only a few thousand people in the world. They do it because Cantú syndrome is so rare that fewer than 200 cases have been recorded or reported worldwide. They do it because when your child is that rare, there is no neat road map. There is no simple pamphlet. There is no familiar pathway. There is no parent group in every suburb. There is no easy answer sitting in the public system waiting to be handed to you. There is just fear. There is just waiting. There is just watching your baby struggle while everyone around you says, “We don’t know.” Private genetic testing happens because of a worried mother. A mother who is terrified. A mother who will not take no for an answer. A mother who refuses to accept that “we don’t know” is good enough when her child’s life, future and safety are on the line. A mother who says no amount of money will stop me from trying to help my child. A mother who is not looking for a label. She is looking for answers.
She is looking for understanding. She is looking for a pathway.
She is looking for treatment.
She is looking for warning signs. She is looking for risks. She is looking for anything that might help her know how to best help her baby. Because not knowing what is happening to your child is its own kind of torture. Every unanswered question feels like another risk. Every delay feels dangerous. Every appointment where nobody knows feels like another door closing. A mother does not chase genetic answers because she wants attention. She chases them because she is terrified. She chases them because she wants to know what she is fighting. She chases them because she wants to help her child live. She chases them because she does not want to bury her child at three years old, or six years old, because the public system did not know enough, fast enough, to help. That is not label-chasing. That is love. That is survival. That is a parent doing what any parent would do when their child’s life, future and safety are on the line. My children are children with rare, severe, significant, permanent and lifelong disabilities that were identified years ago by medical and clinical professionals. The NDIS did not create their disability. The NDIS recognised a need that already existed. When my children entered the NDIS in 2018, I believed the Scheme would finally give them the opportunities, supports and protections they needed to live full lives, regardless of their disabilities. Meadow was the first participant in South-East Queensland. Madden was the fourth. As their mother, I thought that meant the years of advocacy, begging, proving, explaining and fighting were finally over. I thought I would no longer have to fight for every basic service. Every reasonable adjustment. Every safeguard. Every therapy. Every piece of equipment. Every recognition of their needs. Every human right. I thought the NDIS would mean my children would finally be seen. I thought it would mean I could finally breathe, always holding my breath waiting to exhale. The pain that fills my lungs. The anxiety runs through me like a vice grip. Instead, the fight never ended. It just changed names. Now families like mine are listening to governments talk about eligibility, reassessments, budgets, functional capacity, funded supports, sustainability and scheme integrity. But those words are not neutral in my house. In my house, those words mean fear. They mean wondering whether my children’s lifelong disabilities will be reduced to a checklist. They mean wondering whether someone who has never lived one hour in our home will decide what is “reasonable.” They mean wondering whether supports that keep my children safe, connected, regulated and alive will be treated as optional. They mean wondering whether my children will be seen as human beings, or as costs to be managed. And I need people to understand something else. Without allied health and support workers, I would never get to see another adult human being apart from my children. That is not exaggeration. That is the reality of how isolating this life can be. Support workers and allied health professionals are not luxuries to us. They are often the only adults who walk through our door. They are the people who see what this life really looks like. They are the people who help my children participate in the world. They are the people who help me keep going when the system has taken almost everything else from me. When governments cut, restrict, redesign or reassess supports on paper, they are not cutting “line items.” They are cutting human contact. They are cutting safety. They are cutting dignity. They are cutting the fragile scaffolding holding families like mine together. And I need to say something that people do not like to talk about. My children’s disabilities are not the disabilities that get put on the front of newspapers in a neat, inspirational story. They are not the disabilities that get glossy magazine covers. They are not the disabilities that get made into movies or TV shows where everything is softened, explained, made beautiful, made acceptable and wrapped up in a way that makes the public feel comfortable. My children live with the disabilities that people do not like to acknowledge. The disabilities people turn away from. The disabilities that make people uncomfortable.
The disabilities that make people triggered. The disabilities that are too complex, too confronting, too rare, too severe, too lifelong, too inconvenient and too hard to fit into a feel-good story. But what people do not understand is this:
Their discomfort is temporary. This is our everyday life. People can scroll past. People can change the channel. People can say it is too much. People can say it is too hard to hear. People say I don’t know how you do it. People say I could never do what you do. People can look away.We cannot.
We live this every day.
We live the appointments.
We live the medical trauma.
We live the therapy.
We live the behaviours.
We live the sensory overload.
We live the exhaustion.
We live the isolation.
We live the grief.
We live the love.
We live the fear. We live the reality that most people only want to acknowledge when it is made soft enough for them to tolerate. And I am done making my children’s disabilities palatable so other people can stay comfortable. Families like mine have spent years being quiet, polite, grateful, careful and controlled. We have softened our words. We have swallowed our silent intolerable pain. We have hidden the worst days. We have protected other people from the truth of our lives. We have made our reality smaller so others did not have to feel awkward. We have carried impossible things quietly so the world could carry on without knowing the real truth of the less than 1%. But we have had enough. We are tired of being quiet so other people’s feelings and comfort can be placed above our children’s reality.
Families living with the rarest and most confronting disabilities are tired of being told to keep quiet so others do not have to feel uncomfortable. We are tired of our lives being too confronting for the public, but never too confronting for us to be forced to live. We are tired of being expected to make severe disability look neat, manageable, inspirational or acceptable. There is nothing neat about this. There is nothing easy about watching your children struggle every single day and then having to prove to a government system that the struggle is real. There is nothing acceptable about families being forced to beg for supports that should already be understood as essential. Our children are not less worthy because their disabilities are confronting. They are not less deserving because their needs are complex. They are not less human because their lives do not fit into the public’s preferred version of disability. They are not here to inspire people. They are not here to make people feel grateful for what they have. They are not here to be used in a soft-focus story about resilience.
They are children.
They are disabled.
They are rare.
They are significant.
They are permanent.
They are lifelong.
They are mine.
And they deserve to be seen in the fullness of their reality, not only in the parts society finds comfortable enough to witness. I also need to say something even harder. The only time the media, public commentators or certain activists seem to want to see families like mine is when they can put a spin on us. When they can make us fit their headline. When they can use our pain to prove their point. When they can turn our children into a symbol, a statistic, a case study, a tragedy, a political weapon or a prop for a message they already decided before they ever listened to us. We are not invited into these conversations as whole human beings. We are not asked what life is actually like. We are not asked what our children actually need.
We are not asked what it costs a mother to keep going when the system keeps demanding more proof, more reports, more trauma, more paperwork, more patience and more silence. We are only useful to some people when our story can be shaped into something that benefits them.nAnd we have had enough. I am sick and tired of people calling themselves advocates while speaking over the very families they claim to represent. I am sick and tired of performative activism dressed up as advocacy. I am sick and tired of activists using disabled children and exhausted parents to prop up their own message, their own politics, their own platform and their own public image. Real advocacy does not use us.
Real advocacy does not silence us. Real advocacy does not make our lives smaller so someone else’s message can look cleaner.
Real advocacy sits with the hard truth. Real advocacy listens when the truth is uncomfortable. Real advocacy does not cherry-pick the disabilities that are easier to sell to the public.
Because my children are not slogans.
They are not props.
They are not content.
They are not a campaign strategy.
They are Meadow and Madden.
They are children with rare, severe, significant, permanent and lifelong disabilities.
They were born disabled.
They were diagnosed long before the NDIS entered our lives. They deserve to be protected, not used.
And I am their mother. I am not here to make other people’s politics look compassionate. I am not here to make systems look fair when they are breaking families. I am not here to be quiet so others can stay comfortable. I am not afraid of accountability. I am not afraid of evidence. I am not afraid of fairness. I am afraid of a system that demands evidence but refuses to believe lived reality. I am afraid of reforms that speak about protecting the NDIS while making the people it was built for feel like the problem. I am afraid that children like Meadow and Madden children who were born disabled, diagnosed early, and have lived with permanent disability every day of their lives will be forced to prove, again and again and again, that their needs are real. Because they are real.
They were real before the NDIS. They were real when Meadow was a baby. They were real when Madden was on life support. They were real before any politician used the words “scheme sustainability.”
They were real before any bureaucrat questioned a line item. They were real before any activist tried to use our story. They were real before any media decided whether our lives were comfortable enough to publish. And they will still be real no matter what legislation is passed.
Families like mine are tired of being silenced and spoken about but not listened to. Tired of being displayed but not supported. Tired of being pitied but not protected.
Tired of being used when convenient and ignored when the cameras leave.
The truth is, people do not like looking directly at lives like ours because it forces them to confront what disability really means when it is not softened, sanitised, inspirational or politically convenient.
But this is our everyday life.
And we are done shrinking it for anyone. So when I speak about Meadow and Madden, I am not going to keep editing our lives to protect other people’s feelings. Because nobody protects us from the reality of living it. Nobody protects my children from their disabilities. Nobody protects me from watching them struggle. Nobody protects families like mine from systems that demand reports, reviews, reassessments and endless emotional labour.
So no, I will not make this softer.
I will not make it easier to digest.
I will not pretend this is less serious than it is.
This is our life.
This is what the NDIS was supposed to understand.
And this is exactly why families like mine are terrified when governments start rewriting the rules.
The question is not whether my children are disabled enough. The question is whether Australia is humane enough to keep its promise to them a “fair-go”Because the NDIS was not meant to punish families for needing it. It was meant to make sure disabled people could live. Not merely survive. Live.

Go Mumma!

Ethan Gower-Wiggins lost his NDIS-supported job after his first seizure – so his mother spent $30,000 building him a new one, with plans to employ others with disabilities. 👉 https://bit.ly/4vfBHQB

📍📍📍A reality check on the NDIS numbers.

In 2018, Australia had around 4.4 million people with disability. About 1.4 million of them had severe or profound disability meaning they sometimes or always needed help with core daily activities like self-care, mobility or communication.

The latest NDIA figures show 774,456 active NDIS participants as at 31 March 2026.

That means the current NDIS participant count is only about 55% of the number of Australians who were already counted in 2018 as having severe or profound disability.

Put another way: the 2018 severe/profound disability population was about 625,000 people larger than the entire current NDIS participant count.

So when people talk as if “everyone with disability is on the NDIS”, that is simply false.

The NDIS is vital but it is not the whole disability support system. Cutting people off, pushing people out, or narrowing access without proper alternative supports does not make support needs disappear. It just shifts the burden back onto disabled people, families, carers, hospitals, homelessness systems, and the community.

The real question should not only be:
“How much does the NDIS cost?”

The real question must also be:
“How many disabled Australians with serious support needs are being left without the support they need?”

A reality check on the NDIS numbers.

In 2018, Australia had around 4.4 million people with disability. About 1.4 million of them had severe or profound disability meaning they sometimes or always needed help with core daily activities like self-care, mobility or communication.

The latest NDIA figures show 774,456 active NDIS participants as at 31 March 2026.

That means the current NDIS participant count is only about 55% of the number of Australians who were already counted in 2018 as having severe or profound disability.

Put another way: the 2018 severe/profound disability population was about 625,000 people larger than the entire current NDIS participant count.

So when people talk as if “everyone with disability is on the NDIS”, that is simply false.

The NDIS is vital but it is not the whole disability support system. Cutting people off, pushing people out, or narrowing access without proper alternative supports does not make support needs disappear. It just shifts the burden back onto disabled people, families, carers, hospitals, homelessness systems, and the community.

The real question should not only be:
“How much does the NDIS cost?”

The real question must also be:
“How many disabled Australians with serious support needs are being left without the support they need?”

It has been deeply sad to witness an entire family lost. What has been most confronting, though, is not only the tragedy itself but the speed and certainty with which so many have rushed to judgment.

Many of those judging do not understand what it is like to live “on” at all times—to have no space for your own feelings, no room for rest, and to exist under relentless systemic pressure and bureaucracy. They do not know what it is like to be silenced, managed, reviewed, and scrutinised while carrying responsibilities that never switch off.

I keep hearing people say they need to “take care of their mental health.” That statement alone reflects a level of privilege. For many families, carers, and disabled people, there is no option to step back, no pause button, no protected space to prioritise themselves. Survival takes precedence over self-care.

It feels as though many speaking the loudest are doing so from positions of relative safety, passing judgment on a profoundly complex situation they do not truly understand. In doing so, they seem to have forgotten the realities laid bare during the Disability Royal Commission—systemic failure, neglect, isolation, and the devastating consequences of being unheard for too long.

I have never felt more isolated from my own community than I do right now. I am told not to empathise. Not to feel. Not to hold space for complexity. But empathy is not endorsement, and compassion is not excuse—it is humanity.

I will continue to unfollow and disengage from those who respond to tragedy with segregation and moral superiority rather than care. Community should mean coming together in moments of grief, not using loss as a battleground for personal narratives or ideological wins.

For the record: when other families fought for supports under the NDIS, it never took anything away from my own children—yet I still stood beside them. Because solidarity matters. Because none of us thrive by tearing each other down.

And to be clear: I don’t walk away to teach people a lesson. I walk away because I’ve learned mine.

What I am seeing now is not accountability or advocacy. It is judgment, division, and profoundly poor behaviour at a time when support, restraint, and humanity are what is most needed.