Submission 1463

To Whom It May Concern,

Re: Submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

I am writing to you as the primary carer of a thirteen year old boy who cannot speak for himself. My husband is a FIFO worker — away half of the year, carrying the financial weight of our family on his shoulders because I cannot work. Not because I chose not to. Because I burned out. Completely, and without warning, after years of fighting for my son alone while the system that was supposed to help us failed us again and again.

There is no village. There is no family network. There is my husband, exhausted and battling his own mental health demons in a demountable room hundreds of kilometres away, sending money home and carrying guilt he cannot put down. There is me, running on empty, managing everything — the appointments, the therapists, the meltdowns, the paperwork, the advocacy, the endless advocacy — with nothing left in reserve. And there is our son, who cannot speak for himself, who needs both of us to be okay in order to be okay himself.

The NDIS is not a luxury for our family. It is the difference between coping and collapse.

My son is thirteen. He communicates through an AAC device — slowly, deliberately, one word at a time, each phrase the result of weeks of therapy and practice and trust built with people who have learned to understand him. He is finding his voice, word by word, symbol by symbol — and that voice costs money. The device costs money. The therapists who program it cost money. The support workers trained to understand his cues, his silences, his body language — they cost money.

That is not waste. That is my son becoming himself.

When my husband is away — which is half of the year— I am alone with the full weight of our son’s care. I have no capacity to absorb more. I am already beyond what one person should be asked to carry. When my husband comes home, he is not always well and is mentally and physically exhausted from a physical job. He tries. He loves our son fiercely. But he is fighting a battle inside his own mind that FIFO life has made harder, and there are days when he comes through our door needing care himself. We are two people who are both, in different ways, running out.

The NDIS supports are not supplementing our parenting. They are holding our family together.

Submission 1463

Without them, I do not know what breaks first. Whether it is me — already burned out, already on the edge — or my husband, already fragile, already stretched across the impossible distance between his work and his family. Whether it is our son, regressing without the consistency of his supports, losing the words he has fought so hard to find, surrounded suddenly by strangers who do not know him and cannot read him. Whether it is all of us, quietly and simultaneously, in ways that will not show up in any budget line but will absolutely show up somewhere — in a hospital, in a mental health crisis service, in a system even less equipped to help us than the one being dismantled.

One of the cruelest losses this bill threatens is my son’s community access funding. Right now, with the right support worker beside him, my son gets to leave the house. He goes to the park. He visits the library. He watches the world and slowly, tentatively, begins to find his place in it. These outings are not optional extras — they are medically and emotionally essential. Without community access, my son is confined to our home, cut off from the sensory experiences and social connections that his therapists have told us repeatedly are critical to his development and his mental health. He becomes withdrawn. He becomes dysregulated. The regression is visible within days, and the recovery takes weeks. But community access funding does something else too — something this bill’s architects may not have considered. When my son is out with his support worker, I am briefly, partially free. Free to sit with his siblings. Free to attend a school event, help with homework, have a conversation that isn’t about crisis management. My other children are growing up in the shadow of needs that are enormous and relentless, and they deserve a parent who can sometimes, just sometimes, be fully present for them. When community access disappears, I disappear from their lives too — pulled back entirely into the vortex of full-time unsupported care. They lose their brother’s stability and they lose their mother in the same stroke. The harm does not stop at my son’s door. It moves through our entire family.

Without community access, I am alone with the full weight of our son’s care around the clock. Without respite, without relief, without the brief windows that allow me to be a mother to all of my children rather than a full-time crisis manager for one. My other children are already growing up faster than they should. They already understand things about disability, exhaustion, and sacrifice that no child should have to understand. They deserve better. They deserve a mother who can show up for them — for the school plays, The hard conversations, the ordinary moments that add up to a childhood. This bill takes that from them too.

My son cannot communicate distress to a stranger. He cannot tell an emergency nurse he is in pain. He cannot explain himself in a moment of crisis to someone who has not taken the time to know him. When his supports are stripped — when the workers who understand him are gone, when the funding for his device and his therapy disappears — he does not

Submission 1463

become easier to care for. He becomes invisible in the moments that matter most.

And I will be there, alone again, trying to translate him to a world that was not built to listen.

We need this government to understand what it is actually proposing. It is not proposing to tighten a budget. It is proposing to remove the last stable structure from a family already living on the edge — a burned out mother, a FIFO father fighting his mental health from afar, and a thirteen year old boy who communicates one hard-won word at a time.

If reform is genuinely the goal — and I want to believe it is — then pursue it properly. Fund AAC devices and the therapy that brings them to life. Slash the artificial price guide. Pursue provider fraud with real teeth. Bring the NDIS back into public hands. Create a system where families like ours are supported to stay intact — not pushed, one cut at a time, toward the breaking point.

My husband should not have to choose between working away to keep us financially afloat and being here to help carry the weight of our son’s care. I should not have had to burn out completely before anyone noticed we were drowning. Our son should not have to lose his voice because someone decided the funding that gives it to him is a line worth cutting.

We are not asking for the world. We are asking for enough. Enough to keep going. Enough to keep our family together. Enough for a thirteen year old boy to keep finding his words.

He cannot write this letter. So I am writing it for both of us — and for my husband, who is sitting in a room far away from home tonight, reading a draft of this over the phone, crying quietly because he doesn’t know what else to do.

Please listen to us.

With everything we have left —

(Mother, primary carer, and the voice our son deserves)