Submission 855
Submission to the Senate Community
Affairs Legislation Committee
Inquiry into the NDIS Future Generation Bill
Name: V Role: Mother and self-manager of an adult person with disability
Location: Northern NSW
Thank you for the opportunity to submit on the NDIS Future Generation Bill.
I am the mother and self-manager of an adult son with significant and permanent disability. My son is now 28 years old and has relied on a carefully developed support network for many years. I wish to raise concerns regarding the potential impact of mandatory registration requirements for support workers and small operators, particularly those working within self managed arrangements.
The Importance of Long-Term Support Relationships
My son’s support workers have been part of his life since he was approximately 10 years old. Some members of his team have supported him for almost 18 years, while others have been involved for 5–6 years. Over this time, we have built a team of caring, trustworthy and reliable support workers who genuinely understand my son, his communication, behaviours, routines and substantial support needs.
These relationships cannot simply be replaced.
The consistency and quality of these supports have allowed my son to feel safe, regulated and connected to his community. Equally important, they have enabled me, as his primary carer and mother, to gradually increase support hours over many years so that I could return to work and financially support my family.
As I age, these supports are becoming even more critical. Senior members of the support team have informally mentored younger workers to ensure continuity of care and high-quality support practices. This kind of organic, relationship-based support system cannot easily be recreated through large agencies or workforce turnover.
If these workers were lost due to new registration requirements, the consequences would be severe.
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Impact on my wellbeing and capacity as a carer Losing trusted workers would significantly affect my physical and mental well-being. I would become exhausted, stressed and unable to maintain the level of care and oversight I believe my son deserves and requires.
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Impact on my son My son would be devastated by the loss of workers who have been consistent figures in his life for nearly two decades. These support workers are not interchangeable.
Submission 855
They are trusted people who understand him deeply and provide stability, emotional safety and continuity.
Many of these workers have expressed a desire to remain in his life long term, gradually reducing involvement as they age so that transitions are gentle and do not negatively impact him.
Concerns Regarding Mandatory Registration
My primary concern is that the Bill may unintentionally force experienced, ethical and highly effective support workers out of the disability sector due to the financial and administrative burden of registration.
Many self-employed or directly engaged workers support only a very small number of people with disability and often do so on a part-time basis. If a worker is earning approximately $20,000 per year from disability support work, the current registration and compliance costs are simply not financially viable.
These workers are not large businesses. They are individual carers and support workers who have built long-term, trusted relationships with participants and families.
If mandatory registration is expanded without affordable and proportionate pathways, the likely outcome will be:
- loss of experienced support workers;
- disruption to vulnerable participants;
- reduced choice and control;
- increased reliance on large agencies with higher turnover;
- workforce shortages; and
- increased pressure on ageing family carers. This outcome would directly undermine many of the foundational principles of the NDIS.
Importance of Social and Community Participation
I am also deeply concerned about any reforms that may indirectly reduce my son’s access to social and community participation supports.
These supports are not optional extras. They are essential to my son’s physical wellbeing, emotional regulation, safety and quality of life.
My son requires 24/7 monitoring and cannot be left alone. His support workers enable him to safely access the community, remain physically active and participate in everyday life. Through these regular outings and activities, he is known within the local community and by many people who interact with him regularly.
This public visibility is itself an important safeguard.
Submission 855
Local businesses, community members and familiar faces know my son and look out for him. People notice if something is wrong, if he appears distressed, or if routines change unexpectedly. This informal community awareness provides an additional layer of safety and protection that cannot easily be replicated in isolated or purely home-based care arrangements.
If social and community participation supports are reduced due to workforce shortages, registration barriers, funding changes or limitations placed on supports, I ask the Committee to consider:
- what will replace these essential safeguards;
- how participants requiring constant supervision will remain safe and connected; and
- what the long-term physical and psychological impacts will be for people who become increasingly isolated.
Reducing access to community participation risks creating greater isolation for people with disability and increasing pressure on already exhausted family carers.
For my son, being out in the community is not simply recreational. It is critical to his safety, wellbeing, routine, physical health and continued connection to the world around him. Requests to the Committee
I respectfully ask the Committee to consider the following amendments and safeguards:
- Carve-out for self-managed arrangements Regarding the carve-out power in proposed section 10C(2), I ask that:
- self-employed workers; and
- directly-employed workers engaged under self-managed plans be expressly carved out from “NDIS provider” status.
Self-managed participants and families should retain the ability to engage trusted workers without imposing disproportionate registration obligations on small-scale supports.
- Guardrails on prescription powers Regarding the prescription power in proposed section 10C(1)(b)(ii), I ask for clear legislative guardrails to ensure this power is not used to capture small operators unless there are proportionate and affordable registration tiers.
Any registration framework should reflect the scale and risk profile of the provider.
- Limits on ministerial determination powers Regarding the ministerial support determination power in proposed section 34A, I ask for:
Submission 855
- express statutory limits on which categories of supports may be captured;
- consultation requirements before changes are introduced; and
- procedural fairness obligations for participants and providers affected by determinations.
Families and participants require certainty and transparency when essential supports may be altered or restricted.
- Protection for permanent and significant disability Regarding the functional capacity definition in proposed section 9B and related access provisions, I ask for a clear statutory floor protecting people with permanent and significant disability from losing access due to fluctuating interpretations of functional capacity.
Participants with lifelong disability require certainty and stability in accessing supports.
- Safeguards for automated decision-making Regarding the automated decision-making provisions in Schedule 3 Part 2, I ask for:
- clear individual review rights;
- transparency and traceability of decisions;
- notification where automated systems are used; and
- independent auditing and oversight. People with disability and their families should never be left unable to understand or challenge decisions that significantly affect their lives.
Conclusion
The NDIS has enabled my son to live a safer, more connected and more meaningful life. It has also enabled me to continue caring for him while maintaining employment and supporting my family financially.
However, these outcomes have only been possible because of the trusted and stable support team we have built over many years through self-management.
I urge the Committee to ensure that reforms aimed at improving quality and safety do not unintentionally destroy the very support arrangements that are working effectively for participants and families.
Any future registration framework must be proportionate, affordable and flexible enough to preserve the long-term relationships that are essential to the well-being of many people with disability.
Thank you for considering my submission.