Family member's experience of NDIS supports for lifelong disability (Family or carer experience)

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Submission to the NDIS Review Committee

Proposed Changes to the NDIS Act

Submitted: Business Manager at Allied Health Organisation

Introduction

I am an experienced business manager within allied healthcare who previously worked for finance companies. While non-clinical myself, as part of my role alongside speech pathologists I’ve seen how their connections with other specialists impact client lives profoundly over time—NDIS-funded care makes a lasting change! My family member also receives lifelong disability assistance through NDIS; they maintain her home thanks directly to those supports! As such:

  • Eligibility, permanence & sustainability are key concerns;
  • The real-world impacts must be considered thoroughly before any changes can go into effect.

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

Submission 1945

Personal Experience: A Family Member on the NDIS

My family member has a lifelong disability. With NDIS support, she has been able to access assistance with everyday tasks such as shopping, cleaning, and administrative matters that would otherwise be overwhelming. These supports have allowed her to remain in her own home for far longer than would otherwise have been possible, and with far greater dignity and wellbeing.

Lifelong disability is, by definition, lifelong. It does not plateau or resolve. Reducing or removing capacity building supports for someone in her situation would not save the system money in any meaningful sense; it would simply shift the burden elsewhere. Reduced independence leads to isolation. Isolation leads to deterioration. Deterioration leads to crisis. Crisis leads to far greater calls on health, mental health, and emergency services. The costs do not disappear; they are just pushed into other parts of the system, often at greater expense and human cost.

Concerns About the Proposed Changes#### Capacity Building and Social SupportsWhen supports are in place, people growing independent safety confidence connection When supports reduced delayed consequences real serious increased family stress escalation behaviours concern participation community life cases crisis involvement I seen this pattern play out both client base my own family.Families informal carers already carry enormous weight Any reforms reduce formal without recognising limits risk pushing towards burnout turn greater reliance crisis-based interventions This is sustainable outcome anyone.The Proposed Changes Definition PermanenceThis perhaps most significant concern proposal participants could required exhaust all available treatments before being considered eligible NDIS places unrealistic deeply inequitable burden families In practice

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

Submission 1945

A system that delays support until all other options are exhausted is not a sustainable system; it is one that waits for people to reach crisis before stepping in. That approach costs more, achieves less, and causes unnecessary harm along the way.

What I Would Ask the Committee to Consider Based on my ten years working in allied health and my experience as a family member of an

disabled participant, I respectfully ask the Committee to ensure that:

  • Funding and eligibility decisions should be grounded in how a person actually functions day-to-day, not simply based solely upon diagnosis or categorization;
  • Changes regarding permanence must not place undue burden onto families requiring them exhaust theoretical checklists of treatments where those may prove unaffordable geographically out-of-reach or otherwise unsuitable within individual circumstances;
  • Assessments concerning needs ought reflect real-life functioning across daily environments rather than snapshots taken from unfamiliar controlled settings;
  • Participants retain genuine choice over their supports providers including access experienced private practitioners who know well;
  • The value placed around established trusted therapeutic relationships recognized particularly continuity being clinical necessity;
  • Any reduction formal supports considered against reality what families carers can absorb limits exceeded consequences serious;
  • Broader impact changes assessed across healthcare education services evaluated solely leaving NDIS budget

Closing Remarks Understanding support need financially sustainable NDIS No benefits scheme cannot function long-term However sustainability measured

genuine outcomes participants reduced expenditure Scheme supporting people early appropriately consistently will cost time delay creating bureaucratic barriers waits situations crisis. People relying ndis seeking something they do not need They are taking granted ability live independence dignity connection community urge committee keep at centre deliberations Thank you opportunity contribute process.