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

Submission 2294

My name is . I am an NDI participant myself and the parent of a child with profound disability and extremely high support needs. I am writing-to share my concerns about the direction of recent NDIS reforms and the impact they may have on families like mine.

My son has Autism Spectrum Disorder Level 3, ADHD, OCD, Pica, intellectual impairment, a tic disorder and significant behavioural support needs. He is non-verbal, requires constant supervision, and has a long history of dangerous behaviours including self-injury, attempts to remove his own teeth, attempts to injure his eyes, ingestion of non-food items, elopement, property destruction and aggression during periods of distress.

Our family lives with risks that most people never have to consider. We lock our home to keep our son safe. He requires intensive supervision in the community and during transport. Police have attended our home on multiple occasions due to incidents involving his behaviour. His support needs affect every member of our household.

Despite extensive evidence from specialists, therapists, schools and support providers, we continue to encounter significant barriers when trying to access appropriate supports. One of the most frustrating issues is the focus placed on assessment methods that are not appropriate for children like my son. We have repeatedly been told that intellectual disability must be demonstrated through standardised testing, despite the fact that he is non-verbal and unable to meaningfully participate in traditional assessment processes.

Families should not have to fight to prove what is already obvious through years of documented evidence and daily lived experience.

In my experience, there is often a disconnect between what families live through and what decision-makers see on paper. Reports can focus on diagnoses, scores and technical requirements while missing the reality of supporting someone who requires constant supervision to remain safe. Functional impairment, risk and real-world support needs should be given greater weight than rigid assessment criteria.

I am also concerned about the burden being placed on participants and families to continually gather evidence, challenge decisions and navigate increasingly complex systems. The time spent advocating, attending appointments, chasing reports and responding to administrative requirements takes time away from caring for our children and supporting our families.

Another issue is accountability. Participants are expected to provide extensive evidence to justify supports, yet families can find themselves paying for reports, assessments and services that do not always translate into meaningful outcomes. When providers fail to maintain documentation, fail to provide reports, or fail to properly record incidents, it is often the participant who suffers the consequences.

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

Submission 2294

The impact of disability extends well beyond the participant. My other children have been affected by the demands of caring for their brother. Family activities are often restricted. Siblings frequently miss out on opportunities that other children take for granted. Carers experience significant stress, exhaustion and burnout. Any reform of the NDIS must recognise that supporting a participant also means supporting the family and informal carers who make that support possible.

I am not asking for special treatment. I am asking for a system that recognises functional need, values lived experience, trusts credible professional evidence, and reduces unnecessary barriers for families already carrying enormous responsibilities.

My son is not a number on a spreadsheet. He is a child who requires substantial support to remain safe and participate in everyday life. The NDIS has the potential to make an enormous difference for families like ours, but only if it remains focused on individual needs, practical outcomes and genuine inclusion.

Thank you for considering my submission.