National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1818
To whomever is reading this,
My name is and I am the mother, carer and advocate of a child on the NDIS.
In 2023 my son was born with a rare genetic condition called Angelman Syndrome. To say this has been challenging would be an understatement. In a backhanded way we were lucky to get him a diagnosis so young, before he was a year old.
To help you understand the extent of ’s disability I will include an explanation of the disorder.
Angelman Syndrome, or AS, is caused by changes to the UBE3A gene on the 15th maternal chromosome. The disorder is most commonly caused by a deletion of some, or all, of the gene or a mutation of it. When I tell people how a child presents with AS, as it is a rare condition, I explain that it presents a lot like cerebral palsy, or severe autism, but in a very sociable and happy child.
There is, of course, more to it than that. AS causes functionally severe global developmental delays, speech impairment causing little to no speech, movement and balance disorders such as ataxia, and seizures. AS can also cause GORD, gastro-intestinal disorders, frequent drooling, a protruding tongue, chewing/mouthing behaviours, suck/swallow disorders, fascination with water, and sleep disturbance.
The behavioural characteristics of AS result in a person with frequent smiling and laughter, a happy demeanour, an easily excitable personality and a short attention span.
has the additional challenges of talipes (or clubfoot) and central hypothyroid. He is currently
on three medications. These control his seizures, reflux and thyroid condition. He also has to frequently take vitamin supplements despite our best efforts to feed a good diet.
’s diagnosis came after months of struggling to get him to gain weight as an infant, with him
nearly in the zero percentile, and a nasty case of RSV (Respiratory syncytial virus) at four months of age.
has presented challenges that we never expected, and never experienced from our daughter.
And while my partner and I are very lucky in some respects, as he is a disability support worker and I have worked in medical fields, we still find it very difficult with the knowledge and experience we have. I can only imagine how much harder this road is for parents and carers who are unfamiliar with this often-overlooked part of society.
The hardest part of ’s diagnosis has been finding my way through a grieving process. I have had to let go of the hopes and wishes I had for him and his future, and for mine. At the same time that I grieve the little boy, and the man that he will never get to be I am conflicted with guilt. How dare I feel grief and loss when my child is alive, loved, happy and, relative considering his disability, healthy. There is also the guilt in knowing that if my son were to outlive me and my partner, caring for him will become his sister’s responsibility. Something she never signed up for.
It has often been remarked to me how wonderful my children are, how happy is and what a sweet girl my daughter is. How good a mum I am to them both. How lucky is to be a part of our family. When these comments are made, they are genuinely made out of kindness. What people don’t see is the substantial effort that goes into this behind the scenes. Despite the difficulties I face, I have no real option but to find a way to continually step up, show up and to do it with a smile on my face.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1818
The NDIS for our family, has been life changing. We could never have afforded the early interventions and supportive equipment that has been able to access. Interventions that are working towards him being able to do things that many take for granted, like walking and communicating. Participation in the NDIS for is not, and never will be, a luxury; it is his lifeline.
I believe that people like my son represent the original intent behind the NDIS. A program designed to provide lifelong support to people with permanent, profound and complex disabilities. A program that aims to not just keep them safe and healthy, but to include them in our society in a meaningful way. While the NDIS must be sustainable, it cannot come at the cost of these vulnerable members of our society’s safety, their dignity or their basic human rights.
We need to have better protections for people living with profound disabilities written into this bill. People like must be part of a protected cohort of participants. People that need full time, high intensity support. If we include options to implement blanket funding cuts and ratio changes then we open the door to these vulnerable people being abused, neglected, isolated and confined to institutions. There will be higher demands on our already overwhelmed hospital system. And we also risk higher levels of injuries to not just participants, but their carers and families as well. Changes to reduce the levels of support cannot be safely applied to intellectual, cognitive and communication disabilities.
There also needs to be safeguarding around the therapies and services that disabled people need to access. Blanket caps and cuts to allied health services like speech therapy, physiotherapy, occupational therapy and behavioural support can significantly impact on the long-term goals of children like and can also negatively impact on maintaining their ability to function, undermine their communication, increase risks and reduce their independence. Even now, as young as is, we could absolutely use more funding for therapies, not less.
The changes around parental responsibility concerns me. Being a parent of a typical child is already challenging; I would never disagree with that. But raising a child with a profound disability vastly exceeds what most would consider typical parenting. requires constant supervision. He rarely sleeps through the night. He also requires significant medical and physical management and support. Much of this comes at the expense of my partners and I’s sleep, self-care, education and employment opportunities and social lives. This has led to our own high stress levels, relationship struggles, health issues, mental health concerns, loss of income, isolation and loss of community.
I have spoken in my submission at length about my son my family, and the challenges we have had, and will always be facing. I have included so much of myself in this submission because I believe if you know who this bill will affect, the paths we are on, and how much the support of the NDIS means to us; it will help you to see how important protection for our vulnerable, profoundly disabled people are.
A robust NDIS that supports and protects our community should not be seen as a burden to our government and taxpayers, but as the amazing achievement it can be. It’s a well known saying that a true measure of any society can be found in how it treats its most vulnerable.
If the proposed changes to the NDIS do what I fear they are capable of doing I am truly scared for the future of my family. Our life is already so hard and I honestly dread any change that will make that more difficult. I really do hope that you not only listen, but genuinely understand how much the NDIS is valued. Not just to me, but to others with disabilities, their families, carers and advocacy groups who are submitting statements.