Submission 2415
SubmissionontheNDISAmendment(SecuringtheNDISforFuture
Generations)Bill2026
I am the grandmother of two autistic grandsons and the mother of a daughter raising autistic children.
I understand the need for the NDIS to be financially sustainable. However, I am concerned about proposed changes that may reduce access to individualised supports for autistic children before alternative systems have been fully established and shown to work.
What I have learned from watching my grandsons One thing I have learned from watching my grandsons grow up is that autism is not always easy to understand from the outside. My older grandson is verbal and can appear quite capable to people who do not know him well. However, I have watched his parents spend years trying to help others understand his needs. Because he can sometimes appear to be coping, people do not always see the anxiety, support needs and effort involved in everyday life. In contrast, my younger grandson’s autistic traits are generally more obvious, which often leads to quicker recognition of his support needs. This has made me concerned about greater reliance on functional assessments and standardised decision-making. Children whose challenges are less visible may appear more independent than they really are, particularly when families are already providing extensive support behind the scenes. One of the things I worry about most is that the support my daughter and son-in-law provide is often invisible. When their children are able to participate, it can look as though they are coping independently. What people do not see is the enormous amount of preparation, supervision, flexibility and emotional support that made that participation possible. One thing I have noticed as a grandmother is that many people struggle to understand disability-related support needs when they are not immediately visible. When people hear that my older grandson is currently unable to attend school consistently, or that my younger grandson may remain awake until very late despite his parents’ best efforts, they sometimes
Submission 2415
assume these situations could be resolved by firmer boundaries, different routines or simply saying no. What I have witnessed is very different. I have watched two loving and committed parents spend years learning strategies from therapists, adapting routines, preparing for transitions and constantly adjusting their approach to support their children. These challenges are not the result of a lack of parenting. They arise from genuine disability-related support needs that affect everyday life. As a grandmother, I have seen that even activities children genuinely want to do can be incredibly difficult to access. My older grandson has not been able to consistently attend swimming lessons despite wanting to participate. More recently, he has been unable to attend school consistently because of the level of anxiety and support required. These experiences have shown me that participation is about much more than simply making activities available. Children often need flexibility, understanding and individualised support in order to participate successfully.
Why I worry about children being moved out of the NDIS I am also concerned about proposals that may move children away from individualised NDIS supports and into broader support systems before those systems have been proven to work. From what I have seen, support is not simply about making a service available. It is about whether a child can successfully engage with it. Many autistic children need time, trust and flexibility before support becomes effective. I struggle with the idea that children could lose supports that are helping them participate in everyday life before replacement systems are fully available, accessible and demonstrated to work. That does not feel like a fair or safe approach for families already carrying significant caring responsibilities.
Families are already doing a great deal As both a parent and grandparent, I understand that all children require care and support as they grow. However, the level of planning, supervision, emotional support and flexibility required for my grandsons goes well beyond what I experienced raising my own children or supporting other grandchildren in our extended family.
Submission 2415
My daughter has already stepped away from her career to care for the children, and her husband’s work is regularly affected by the level of support required at home. Despite this, they do not receive regular support worker hours. Most of the support is provided directly by the children’s parents, and they have very limited informal supports available. One of my concerns about this Bill is the increasing expectation that families and informal supports will absorb more of the caring role. From what I have observed, this family is already doing an enormous amount. The question is not whether parents should support their children. Of course they should. The question is how much disability related support families can reasonably be expected to provide before their own wellbeing, employment and family functioning are affected.
Good support prevents bigger problems later I am also concerned that reducing effective early supports may not remove the need for support, but instead shift pressure onto schools, health services, mental health services and families. From what I have seen in my own family, good support does not remove all challenges, but it can prevent situations from becoming much more difficult over time. Children with disability should not have to struggle until families reach crisis point before support is considered necessary. I ask the Senate to carefully consider the lived experiences of autistic children and their families when reviewing this Bill.