National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 3192
Good afternoon I would like to add a submission for consideration of the NDIS overhaul.
I would like to provide our lived experience, my daughter is autistic level 2/3 - there is no such thing as mild to moderate, her symptoms fluctuate on a daily basis and improve when her environment is nurturing and worsen when she is exposed to stressors specific to her.
The phrase when you have met one autistic person you have met one autistic person they all have different needs, triggers, likes, dislikes. In this vein they all need different therapy models - for example we CANNOT do therapy in an office setting this leads to extreme meltdown leading to violence, another family may find they can only do office therapy. We have gone through many therapists to find the ones who work well for our needs, MANY have not been able to meet our needs and the overhaul suggesting that choice and control is stripped away and the agency chooses the therapist will result in serious psychosocial harm, regression and distrust if our support people whom we have spent years working with and establishing relationships are stripped away.
We have been through many difficult times, visits to hospitals in crisis state and numerous suspensions which risk job loss resulting in an inability to support the family (carers payments don’t even come close to paying rent, bills, specialist fees and medications) Carer burnout is a serious issue, without support work I am unable to seek medical attention for my numerous medical issues that have arisen since becoming a carer. My daughter is unable to be taken with me as I am not allowed to talk to others for more than 2 minutes and she becomes violent if she has to wait. Her ability to participate in community and build skills and capacity will diminish if the funds are slashed like the government has promised. In turn my health will suffer further and my capacity to care will disappear leaving her in the care of the government which will cost astronomical amounts compared to the huge hours of care I currently provide (that go way above standard parenting responsibilities)
We are terrified of what will happen if we lose access to or lose particular funding for goals and access. The rorting issues are concerning but they are nothing to do with our family and we should not be facing having our only support services stripped away. Parent support groups, school programs etc are not the answer, choice and control and tailored support is the only way we have seen any success in our journey.
Thank you for your time today