Submission on the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026

I am the parent of two autistic children.

I understand the need for the NDIS to be sustainable. However, I am concerned that some of the proposed changes may make it harder for autistic children to access support and place more pressure on families before alternative systems are fully established and proven to work.

Autism is not always what people expect

I have two autistic children. Their support needs look very different, but both need significant support. My younger child’s support needs are more visible to other people and were recognised quite quickly. My older child is verbal, academically capable and can independently read short chapter books. He needs to be challenged at school to stay engaged in learning.

At the same time, he struggles with things many people would expect a six-year-old to manage. He needs support with social situations, emotional regulation and unstructured times such as break times at school. The part of the school day that many children find relaxing is often one of the most stressful parts of his day.

Recently, he wanted to attend a classmate’s birthday party. We got there, but he became overwhelmed by the crowd and unfamiliar people and couldn’t go inside. In the same way, he wants to attend school but is currently unable to do so consistently.

Experiences like this have taught me that autism is not always easy to understand from the outside. A child’s strengths can be obvious, while the amount of support they need remains largely invisible.

What a child is capable of and what they can consistently participate in are not always the same thing.

What people don’t see

One of my concerns about the proposed move toward functional-capacity assessments and tighter eligibility criteria is that they may focus on what a child can do without recognising the support that made it possible.

When people see my children participate successfully in something, they don’t see the planning, flexibility, problem-solving and emotional support that went into making that activity possible. Something as simple as a doctor’s appointment, birthday party or family outing can involve significant preparation and still be unsuccessful.

Over time, many of these adjustments become so normal that families no longer recognise how unusual they are. That is one reason I worry about assessments that rely heavily on a snapshot of a child’s functioning or a parent’s description of daily life.

Families are already carrying a lot

Before having autistic children, I had no idea how much time could be spent anticipating problems, preparing for everyday activities and helping a child participate in things they genuinely want to do.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2540

I left my career to support our children’s needs. My husband is now our sole income earner, but his work is also regularly affected by the level of support our family requires.

We do not currently have someone who regularly comes into our home to help care for our children. We also have very little practical help available from extended family, and often have to contribute our own money towards therapy and disability-related supports.

We have been fortunate to have access to an experienced speech pathologist, a trusted long-term GP, specialist assessment and medical support when needed, and a school that is trying to help. In particular, our speech pathologist has helped both our family and the school better understand our son’s needs.

Even with these supports, one of our children is currently unable to attend school consistently.

That isn’t because anyone has failed. Sometimes the public assumes that if a child is still struggling, the answer is better parenting, a different therapist or firmer boundaries. Our experience has been that autism is often far more complex than that.

Foundational supports and uncertainty

In principle, I support strong foundational supports for children and families. If families can access effective support early and close to home, fewer children should need the NDIS.

However, I do not believe autistic children should lose access to the NDIS before replacement systems are fully established and shown to work. The success of foundational supports should be measured by whether families’ needs are genuinely being met, not by making access to the NDIS more difficult.

I am also concerned about the uncertainty these reforms create. Families do not yet know what future assessments will involve, what evidence will be required, how often reassessments will occur, or what supports will be available if a child is found ineligible.

Recommendations

I encourage the Senate to:

• Ensure autistic children are not excluded from the NDIS because their support needs are less visible or uneven.
• Ensure future assessments consider information from families, educators and treating clinicians, not just a single assessment process.
• Ensure children do not lose access to NDIS supports before replacement systems are fully established and independently evaluated.

Support does not remove disability. What it can do is help children participate in school, family life and their communities while preventing small challenges from becoming much larger problems later.

I ask the Senate to carefully consider the lived experiences of autistic children and their families when reviewing this Bill.