Submission 1982
Submission to the Senate Standing Committee on Community Affairs
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Date: 29 May 2026
I welcome the opportunity to provide a submission regarding the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
I am a carer and family member of an NDIS participant.
I am deeply concerned about the impact this Bill will have on people with disabilities and the families who support them every day.
The NDIS is not an abstract policy issue for our family. It shapes whether my loved one can safely get out of bed each day, participate in the community, attend therapy, and maintain any sense of independence and dignity.
There are days when everything runs smoothly only because the right supports are in place at the right time. There are also days when, without warning, those supports are the only thing standing between stability and crisis. This is the reality behind the policy discussions.
The supports funded through the NDIS are not optional extras or comforts. They are what make daily life possible.
My daughter would not have been able to complete high school without NDIS funding for the psychologist she accessed over the final years of school. That support was not supplementary — it was essential to her ability to remain engaged, regulated, and able to complete her education.
Unfortunately, due to funding limitations at the time, we were not able to access a support worker, despite this being a need that should not fall to parents alone to provide. Much of that responsibility instead fell to our family in ways that were unsustainable.
As she has now turned 18 and finished school last year, we are currently required to go through a change of circumstances process because she is unable to obtain employment. We now need support to help her build the skills and capacity required to find work, so she can move towards independence and be able to afford to live in the community.
This situation has occurred alongside significant strain on our family. We were forced to sell our business due to the level of carer responsibilities placed on me, which ultimately contributed to a breakdown. This is not an isolated experience — it reflects the cumulative impact of unsupported caring over time.
Although the consultation period has now been extended, it still does not feel like people with disability and their families have been given a genuine opportunity to meaningfully shape reforms of this scale. Many carers and participants are already stretched beyond capacity, and even with more time, the complexity of the legislation, combined with its
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technical language and the uncertainty it creates, makes it difficult to fully understand what is being proposed and what it will mean in practice.
In our household, like many others, life is already organised around appointments, therapy sessions, personal care, advocacy responsibilities, and the constant management of unpredictable needs. Sitting down to analyse complex legislative change is not something that can be done easily or without support. Because of this, it still feels as though decisions are being made about our lives in a process that is not fully accessible to the people most affected.
At the same time, significant concerns remain about transparency and parliamentary scrutiny. Key parts of the proposed framework — including eligibility thresholds, assessment processes, funding reductions and support categories — have not yet been released in full. This means that families like ours are being asked to respond without seeing the complete system that will ultimately determine how supports are allocated and removed.
This creates a deep sense of uncertainty, particularly given the broad ministerial powers contained in the Bill. It raises the concern that major decisions affecting eligibility and funding may later be implemented through legislative instruments rather than full parliamentary debate. For families who rely on the NDIS for daily survival, this is not a procedural issue — it directly affects whether we can plan, whether we can maintain stability, and whether supports that exist today will still be there tomorrow.
In our own experience, even relatively small changes in funding or support hours can have immediate and cascading consequences. It can mean delaying or cancelling therapy, reducing community participation, or placing additional pressure on already exhausted informal care arrangements. The uncertainty alone creates ongoing stress because it forces families to prepare for loss without knowing what will replace it.
There is also a very real fear that existing participants may lose supports or funding while having fewer practical avenues to challenge those decisions. When supports are reduced, The impact does not remain within the system — it shifts directly onto families and carers. This often results in reduced workforce participation, financial strain, and increasing levels of physical and emotional exhaustion.
We have experienced firsthand how quickly stability can be disrupted when supports are reduced, even slightly. What may appear as an administrative adjustment can translate into significant changes in daily functioning, wellbeing, and safety. It is difficult to overstate how destabilising it feels to know that larger structural changes are being considered without clear guarantees of protection for those already relying on the system.
I am also deeply concerned about the move toward standardised functional capacity assessments, including the use of tools such as the I-CAN. Disability is not static. It fluctuates, it presents differently in different environments, and it is often masked in short formal settings.
From my perspective as a carer, I see the difference between how someone may present briefly in an assessment and the reality of what it takes for them to function before, during, and after that moment. Many people expend enormous energy simply to appear “okay” in
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structured environments, only to experience significant exhaustion or functional decline afterwards. There is a real risk that this complexity will not be fully captured, resulting in people being assessed as needing less support than they actually require.
Any assessment system must therefore only be introduced if it is independently validated for fluctuating and complex disabilities and developed in genuine partnership with people with disability and those who support them.
The proposed reductions to community participation and capacity-building supports are also deeply concerning. These supports are often what enable people to remain connected to their communities, maintain mental wellbeing, and develop independence. Without them, isolation increases quickly and the burden on families grows significantly.
In our own case, supports are not optional — they are what make daily life sustainable. Without them, the entire structure of care shifts back onto family members who are already stretched beyond capacity.
It is difficult to see how reductions in these areas can be considered safe or sustainable before alternative systems such as Foundational Supports are fully operational and proven to meet real-world needs. Without that safety net, families are left carrying risks that should not be placed on them.
Ultimately, the NDIS has made a profound difference to our lives and to many families like ours. It enabled my daughter to complete high school with the support of psychological services that were essential to her learning and wellbeing. Without that support, her education pathway would likely not have been possible. Yet even with that success, the lack of broader supports such as a support worker meant the responsibility on our family remained overwhelming and unsustainable.
As she transitions into adulthood, we are now facing the next stage of uncertainty — seeking supports to help her build the capacity to obtain employment so she can live independently. This is not about lowering expectations; it is about ensuring she has a genuine opportunity to participate in society and support herself with dignity.
This Bill, as it stands, risks shifting the system away from that purpose and replacing it with uncertainty, fear, and instability for families who are already carrying significant responsibility. I urge the Committee to ensure that reforms proceed only with full transparency, proper scrutiny, and genuine inclusion of people with disability and their carers — because the consequences of getting this wrong are not abstract. They are lived every day, and they shape entire futures.
Thank you for considering my submission.