Submission 996
Submission to the Senate Community
Affairs Committee
NDIS Future Generations Bill 2026
My name is and I live in , Queensland. I am the mother of, a 28-year-old man with severe and profound disability.
cannot live independently or safely access the community on his own. He has very limited communication, poor safety awareness, sensory processing difficulties, challenging behaviours, and needs support with most aspects of daily life. He cannot safely judge danger, explain himself clearly to strangers, regulate his emotions in stressful situations, or independently manage daily activities in the community.
My husband and I are now in our 60s. We have spent decades building a safe and meaningful life around . We are deeply worried that the proposed NDIS reforms could unintentionally undo much of what has been built and place at much greater risk in the future.
My two biggest concerns are:
- cuts or restrictions to community participation supports, and
- changes that make self-managed “service for one” arrangements harder to operate. I do not think many people outside disability fully understand what these supports actually do for someone like .
For , support workers are not simply taking him on outings or “keeping him company”.
They are preventing crisis.
They are helping him safely participate in ordinary life so he does not become isolated, distressed, misunderstood, or pushed into more restrictive and expensive systems later.
currently participates in several community activities with support.
He helps collect recyclable containers in the community and return them for recycling. He helps wash towels for a local gym as a very small microenterprise activity. He volunteers at a community garden that grows food for local people. He attends live music events and local community gatherings.
To an outsider, these activities may sound small or non-essential.
But for , they are essential.
They are how he learns routines, develops communication, experiences purpose, regulates emotionally, and becomes known and accepted in the community.
Submission 996
Most importantly, these activities create relationships.
People at the recycling depot know . Staff at the gym recognise him. Volunteers at the garden know his name. Local musicians greet him and include him.
This matters far more than many people realise.
When someone with severe disability is known in the community:
people are more patient, people understand their behaviour, people recognise when something is wrong, people are more likely to help, and situations are less likely to escalate into crisis.
Without these relationships, people like can quickly become isolated and misunderstood.
For example, has behaviours of concern and can become distressed or overwhelmed. If this happens in public, and people do not know him or understand disability, his behaviour could easily be mistaken for aggression, intoxication, deliberate bad behaviour, or even criminal behaviour.
That creates very real risks of:
police involvement, emergency department presentations, mental health interventions, restrictive practices, or involvement with the justice system.
The supports receives now help prevent these outcomes before they happen.
The NDIS is currently funding prevention.
If community participation supports are reduced, ’s life will become smaller and more isolated. and I cannot physically sustain replacing all of these supports ourselves as we age.
Without regular meaningful activities and trusted support:
is likely to become more anxious and frustrated, behaviours of concern are likely to increase, family exhaustion and burnout will increase, and the likelihood of crisis responses will increase.
This does not save money long term. It simply shifts costs into hospitals, mental health systems, emergency services, and potentially the justice system later.
Submission 996
I am also deeply concerned about changes that may undermine self-managed and family governed support arrangements like ours.
We operate a small “service for one” model built specifically around ’s needs. We employ and train workers who know him well and understand:
how he communicates, what triggers distress, how to keep him safe, how to prevent escalation, and how to help him participate successfully in the community.
This has taken years to build.
Large traditional provider models are often not suitable for people with severe and complex disability like . High staff turnover, unfamiliar workers, rigid systems and lack of relationship-based support can increase risk significantly.
For , consistency and trusted relationships are not preferences. They are safety mechanisms.
I worry the reforms are being designed around more typical or less complex disability experiences and do not fully account for the realities faced by families supporting people with profound disability and behaviours of concern.
My fear is that these reforms will unintentionally move people like away from meaningful lives in the community and toward lives that are smaller, more isolated, more restricted, and more crisis-driven.
and I are trying to build a future where is connected to his community and supported by strong relationships long after we are gone.
The current NDIS has allowed us to build those safeguards around him.
Please do not unintentionally dismantle them.
I ask the Committee to:
Reject or amend proposals that significantly reduce social and community participation supports. Protect self-management and family-governed “service for one” arrangements. Ensure people with disability are not forced into unsuitable provider models. Ensure reassessment processes properly recognise the real-world complexity of supporting people with profound disability and behaviours of concern. Preserve review and appeal rights for participants and families.
Please listen carefully to families supporting people with severe and complex disability before making changes that could have lifelong consequences.
Submission 996