Submission to the Senate Community Affairs Committee

NDIS Future Generations Bill 2026

My name is [redacted] and I live in Cammeray, NSW. I am the cousin of [redacted], a 28-year-old man with severe and profound disability. [Redacted] 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. His parents (my aunt and uncle) are now in their 60s. They have spent decades building a safe and meaningful life around [redacted]. We are deeply worried that the proposed NDIS reforms could unintentionally undo much of what has been built and place [redacted] at much greater risk in the future. My two biggest concerns are:

1. cuts or restrictions to community participation supports, and two: 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 [redacted]. For [redacted], support workers are not simply taking him on outings or “keeping him company” they prevent crisis by helping them participate more broadly so he does not become isolated distressed misunderstood pushed into restrictive expensive systems later Currently participates several community activities including collecting recyclable containers returning them recycling washing towels local gym microenterprise activity volunteering garden growing food attending live music events gatherings To outsider may sound small non-essential

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

Submission 1848

But for redacted, they are essential. They are how he learns routines, develops communication, experiences purpose, signals emotionally, and becomes known and accepted in the community. Most importantly, these activities create relationships. People at the recycling depot know redacted. 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 recognize when something is wrong,
• People are more likely to help, -and situations are less likely to escalate into crisis. Without these relationships, people like redacted can quickly become isolated and misunderstood. For example,* redacted* has behaviors of concern and can become distressed or overwhelmed.If this happens public,and people do not know him or understandingisability,his behavior could easily be mistaken aggression,intoxication,deliberate badbehaviouror even criminalbehavior.That creates very real risksof:- Police involvement,- Emergency department presentations,- Mental health interventions,- Restrictive practices,- Or involvement justice system.The supports receives now helps prevent outcomes before happen.NDIS currently funding prevention If community participation support reduced,’s life will become smallerandmore isolated.* Redacted*, I cannot physically sustain replacing all those ourselves as we age.Without regular meaningful activity trusted support:* Redactedlikelybecomeanxiousfrustrated is behavioursconcern increase

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

Submission 1848

• 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. I am also deeply concerned about changes that may undermine self-managed and family-governed support arrangements like theirs. Their service operates on an individualized model built specifically according to redacted’s needs.They employ workers who know their client well:

• how he communicates;
• what triggers distress;* how they keep his safety in mind; how we prevent escalation,* and help him participate successfully within society.* This has taken years to build.Large traditional providers often aren’t suitable due to severe complexity,** redacted**, high staff turnover, unfamiliarity among employees, rigid structures without relationship-based care can significantly raise risks.For redacted, consistency with trusted relationships are essential mechanisms.I worry reforms designed around typical or less complex disabilities don’t fully account families supporting profound disability behaviors concern.Our fear is these reforms unintentionally move people away from meaningful community lives toward smaller ones.Isolation restrictions driven by crises.The current NDIS allowed us safeguarding them.Parental efforts aim for a future where redacted connected communities supported strong bonds beyond our presence.Please do not dismantle safeguards Committee requests include: Reject proposals reducing social participation supports Protect self-management & family governed “service one” arrangement Ensure individuals not forced unsuitable provider models.

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

Submission 1848

• Ensure reassessment processes properly recognize the real-world complexity of supporting people with profound disability and behaviors of concern.
• Preserve review and appeal rights for participants and families. Please listen carefully to families supporting people with severe and complex disabilities before making changes that could have life-long consequences. Regards