National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 1702
Date: 29/05/2026
Recipient: Committee Secretary Senate Standing Committees on Community Affairs PO Box 6100 Parliament House Canberra ACT 2600
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations)
Bill 2026
Dear Committee Secretary,
I write as an individual, and I DO NOT support the current changes as set out in the National Disability Insurance Scheme (Securing the NDIS for Future Generations) Bill 2026.
I live in Adelaide and am the mother of a nearly 7 year old boy with Down syndrome. We suspect he
has Autism as well. He is the light of our lives, but his condition means that he will likely need
significant care for the rest of his life. He is non-verbal, not continent and has no concept of danger,
meaning we need to lock doors, secure sharp objects and ensure he can’t reach things like kettles or
toasters.
I’m sure members of the committee will hear many stories like this, but I want to underscore that the level of ‘parental responsibility’ with a child with a disability is relentless and unending. It means securing your child’s health and safety every minute they are awake, in a way that never eases off, unlike for typical children. It is also the pervasive and nagging fear of what will happen to them when you’re gone.
Parents like me don’t use the NDIS for nefarious purposes. It enables me to continue to work and participate in the economy, which helps me provide for our family and gives me an outlet for myself. Our participation in the scheme helps our son learn and develop with the aim of living a good life.
Please keep families like mine in mind when you consider this Bill. My most pressing concern with the Bill is the presumption of parental responsibility (s34):
Section 34(1J) prohibits funding whose primary purpose is to “reduce burdens on parental time below what is reasonably expected of a parent” - with no objective benchmark for what’s “reasonable.” This needs to ensure that parents are not left covering those items that extend well beyond what caring for typical children would entail.
Overly punitive rules around parental responsibility will have a perverse economic outcome, removing parents from the workplace if they do not receive adequate support to care for children with a disability.
The Bill has many deficiencies, but the above will hurt families. Please recommend changes to this section in particular.
Yours sincerely,
(Please don’t publish my name on the website – publication of this submission is ok.)