NDIA Accountability Project

Family member's experience of NDIS supports for lifelong disability

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Submission 1945

Submission to the NDIS Review Committee

Proposed Changes to the NDIS Act

Submitted by: Business Manager, Allied Health Organisation

Introduction

I am a business manager with ten years of experience working within an allied health organisation, having previously come from the finance sector. While I am not a clinician, I work alongside dedicated speech pathologists every day, and I am witness to the connections they have with other allied health specialists in supporting their clients. In that time, I have witnessed firsthand the profound and lasting difference that NDIS-funded supports make to people’s lives.

I am also personally invested in this issue. A close family member receives NDIS supports for a lifelong disability, and I have seen directly how those supports have enabled her to maintain her independence and remain in her own home.

I am writing to share my perspective on the proposed changes to the NDIS Act, particularly around eligibility, permanence, and the sustainability of supports. I respectfully urge the Committee to consider the real-world impact these changes would have on participants and their families.

What the NDIS Means: From Where I Sit

Day after day, I watch our clinicians do extraordinary work. Communication is far more than spoken words; it encompasses written expression, body language, social cues, and the simple but profound ability to look up and engage with the world around you. I have seen clients arrive unable to cope in a classroom, unable to participate in community life, or unable to manage the basic demands of daily living. With the right supports in place, those same clients grow in confidence, independence, and connection.

NDIS funding has been the key that unlocks access to this expertise. It gives clients genuine choice and control, which is the very foundation the Scheme was built on. Without it, many of the people we support simply would not have access to the services that make these outcomes possible. For some, the difference is as stark as attending school versus being unable to cope in the classroom. For others, it is the difference between participating in work and community life, or withdrawing entirely due to communication, cognitive, or mental health barriers.

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 Supports

When supports are in place, people grow in independence, safety, confidence, and connection. When supports are reduced or delayed, the consequences are real and serious: increased family stress, escalation of behaviours of concern, reduced participation in community life, and in some cases crisis system involvement. I have seen this pattern play out, both in our client base and in my own family.

Families and informal carers already carry enormous weight. Any reforms that reduce formal supports without recognising the limits of family and carer capacity risk pushing people towards burnout, and in turn, towards greater reliance on crisis-based interventions. This is not a sustainable outcome for anyone.

The Proposed Changes to the Definition of Permanence

This is perhaps my most significant concern. The proposal that participants could be required to exhaust all available treatments before being considered eligible for the NDIS places an unrealistic and deeply inequitable burden on families. In practice, “available” treatments may be unaffordable, located far from where a person lives, or simply not realistic given a family’s circumstances. Yet under these changes, they could still be counted against eligibility.

Families dealing with disability do not need more administrative hurdles. They need to get on with accessing the right support. Requiring them to work through a checklist of theoretical treatments before qualifying for assistance means longer delays, greater financial pressure, more family stress and exhaustion, and in many cases they arrive at the same conclusion that was apparent from the outset. This is not an efficient use of limited resources; it is an inefficient redirection of them.

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

  • Funding and eligibility decisions should be grounded in how a person actually function day to day, not simply how their diagnosis is labelled or categorised.

  • Changes to permanence should not place the burden on families to exhaust a theoretical checklist of treatments, particularly where those treatments are unaffordable, geographically out of reach, or simply not suited to the person’s situation.

  • Assessments of a person’s needs should reflect how they function across their real daily environments, not a snapshot taken in an unfamiliar or controlled setting.

  • Participants should retain genuine choice in their supports and providers, including access to experienced private practitioners who know them well.

  • The value of an established, trusted therapeutic relationship should be recognised. For many participants, that continuity is not a convenience but a clinical necessity.

  • Any reduction in formal supports must be considered against the reality of what families and carers can absorb, as there are limits, and when those limits are exceeded the consequences are serious.

  • The broader impact of changes should be assessed across health, education, and other services, not evaluated solely on what leaves the NDIS budget.

Closing Remarks

I understand and support the need for a financially sustainable NDIS. No one benefits from a scheme that cannot function over the long term. However, sustainability must be measured in genuine outcomes for participants, not simply in reduced expenditure. A scheme that supports people early, appropriately, and consistently will cost less over time than one that delays access, creates bureaucratic barriers, and waits for situations to reach crisis.

The people who rely on the NDIS are not seeking something they do not need. They are seeking what most of us take for granted: the ability to live with independence, dignity, and connection to their community. I urge the Committee to keep that reality at the centre of its deliberations.

Thank you for the opportunity to contribute to this process.