National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1025
I am writing to you as an autistic mother of an autistic child (and another adult autistic child).
My youngest child is ten years old and severely autistic (high level 2). She was premature and has always required extra attention to keep her regulated, and to keep her and our family safe. I am sleep deprived and burnt out from the constant advocacy, co regulation and supervision that she requires.
I am greatly concerned by the new method of assessment for supports. I struggle to express myself clearly orally. Adding to my autism difficulties, I also have moderate hearing loss. I do not communicate well over the phone. I have previously had a support person or OT assist me with phone meetings. I cannot always hear clearly and I am unable to process all the information, especially when there are multiple questions. It also becomes overwhelming and I can experience selective mutism.
I am also concerned by language in the bill that deems tasks parental responsibilities. My youngest child is exponentially harder to parent than all my other children combined. The amount of time and effort I already put into her life just so she can attend school and not have violent meltdowns is exhausting. I have to manage my day to do everything I can during school hours. I have to manage her regulation so that she doesn’t abscond, punch or kick holes in walls, or injure herself or other family members. I had to give up work and I rarely socialise. On our rare family holidays I don’t relax as I am needed more than ever as her support person. Somehow I have to find moments to regulate myself in all of this.
Therapy has been invaluable to both of us. It helps keep me sane. Since my diagnosis and therapy to understand myself as an autistic person, I have stopped having suicidal thoughts. My daughter has had a professional to help me advocate at school (because mothers are still dismissed by people who consider themselves professionals), someone in addition to myself to talk to and learn skills from, and someone to provide valuable resources we can use at home and school. Working proactively with therapists and my daughter has decreased the severity and incidence of meltdowns. But it takes time to find a therapist who myself and my child can trust and form a relationship with. I fear that taking away this choice and reducing sessions will lead to less successful therapy.
My daughter’s current group social support has helped her regulate after struggling at school all week, while giving her a sense of achievement as she develops skills both socially and physically. She would not be able to participate in this if it wasn’t directed towards disability, due to group sizes and other requirements. My daughter is entering puberty, and neuroaffirming groups like this will be even more important in the next few years as relationships become increasingly harder to navigate for her.
While I understand the need for ndis to spend money wisely, I ask that processes are not made more difficult for disabled people.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1025