Submission 1522
Letter to Parliament Regarding NDIS Supports
To the Members of Parliament,
My name is and I am a single mother raising two boys on my own. My oldest son, , lives with Autism Spectrum Disorder (ASD), ADHD, Oppositional Defiant Disorder (ODD), Mild Intellectual Disability, Dyspraxia, anxiety, childhood trauma and PDA traits.
I am writing this because I honestly do not think the people making decisions about the NDIS truly understand what life looks like for families like mine behind closed doors.
When politicians talk about “cuts”, “reasonable supports”, “parental responsibility” and new legislation, those words might sound simple on paper, but for families like ours those decisions affect every single part of our lives.
My son does not just have autism.
And this is one of the biggest problems with the system.
The NDIS only really recognises and funds support around his Autism and Intellectual DisABILITY, while the rest of his diagnoses are treated like they somehow don’t count or don’t impact his daily functioning. But that is not reality.
His ADHD affects his impulse control and safety awareness. His ODD affects his behaviour and emotional regulation. His anxiety affects his ability to cope with everyday life. His dyspraxia affects his independence and daily tasks. His trauma affects how safe he feels in the world and how he reacts to stress. His PDA traits make even basic requests feel overwhelming and threatening to him.
All of these diagnoses overlap and feed into each other every single day.
My child is not a list of separate conditions sitting neatly on paper. He is one little boy struggling through life with a brain and nervous system that are constantly overwhelmed.
Yet families are expected to somehow separate all of these things and prove over and over which part of our child deserves help.
It is exhausting.
Submission 1522
has violent outbursts, runs away in public, lashes out physically, struggles to communicate properly, cannot regulate his emotions and requires constant supervision around his younger brother because he can become unpredictable very quickly.
There are days where he goes from happy to completely explosive within seconds. There are days where he screams that he wants to die, hits himself in the head, throws things, runs from the house or road without understanding danger, or physically lashes out at me while I am trying to protect both him and his little brother.
And then after these moments, I still have to somehow continue being mum. I still have to cook dinner, clean the house, organise therapies, get kids to school, attend appointments, work when I can, manage finances and survive mentally myself.
People say “all parents are tired”.
But this is not normal parenting exhaustion.
This is living in constant fight or flight mode. This is never being able to relax because your nervous system is always waiting for the next incident, the next phone call from school, the next meltdown, the next unsafe situation.
I have not had the luxury of sharing this load with another parent.
I am one person raising and financially supporting two children with little to no support from either biological father. There is no second parent helping with appointments, therapies, school calls, finances, behaviours, routines or giving me a break when I physically and mentally cannot keep going anymore.
Yet somehow the response families like mine constantly hear is “parental responsibility”.
I find that incredibly frustrating and honestly insulting sometimes.
Parents of children with profound disabilities and complex behavioural needs are not parenting under the same circumstances as everyone else.
Our children require supervision, intervention, emotional regulation support and care far beyond what would normally be expected of a parent.
And no two families are the same.
Submission 1522
A single mother raising children alone with no financial support, no consistent informal supports and her own mental health struggles should not be assessed the same as a household with two healthy parents, financial stability and extended support systems.
Real life matters. Individual circumstances matter.
One of the most heartbreaking moments for me was realising that I had to openly admit I was close to giving up care of my son before I was finally listened to.
I reached a point where I was so burnt out, mentally exhausted and overwhelmed that I told professionals I did not know how much longer I could safely keep doing this without more support.
And after reaching that point, after breaking down enough to finally be taken seriously, I received one week of funded respite for an entire year.
One week.
That is what absolute burnout, psychiatric admission, emotional collapse and years of carrying this alone was worth in the eyes of the system.
I do not think people understand how degrading that feels as a parent.
Respite is constantly treated like it is some kind of luxury or “time off”. It is not.
Respite is what prevents carers from completely collapsing. It is what prevents mental health admissions, family breakdowns and children ending up in crisis systems because their parents simply cannot survive anymore.
Families should not have to completely break before they are offered the bare minimum support.
And children with disabilities should not have to deteriorate further before they are considered “disabled enough” to deserve help.
I love my son more than anything in this world. He is funny, smart, caring and capable of so much with the right support around him. I fight for him every single day even when I feel like I have absolutely nothing left in me.
Submission 1522
But I am tired.
Not just “mum tired”.
Completely exhausted in a way I do not think people understand unless they live this life themselves.
And what scares me most is that families like mine are being made to feel like burdens instead of people who are desperately trying to keep their children safe, supported and alive.
The NDIS was meant to support people with disabilities and help families continue caring safely at home.
Instead, many of us are spending our lives fighting systems, begging to be believed and trying to prove over and over again just how hard things really are.
I am asking you to please remember that behind every funding cut, every rejected support and every policy change is a real child and a real family living with the consequences of those decisions long after the paperwork is closed.