Submission to the Senate Community Affairs Legislation Committee
Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submitted by: Nominee and Mother of
Introduction
My name is and I am the nominee and mother of my adult daughter, .I am writing to express my concern about aspects of the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 and the potential impact it may have on people like .
About
is 27 years old and has Angelman Syndrome, severe intellectual disability, significant communication impairment and epilepsy. She requires support in all areas of daily living, including personal care, communication, health management, decision making, emotional regulation and community access.
For the past three years, has successfully lived in her own home with a participant-directed, family-led support model. This arrangement has allowed her to live safely, remain connected to her community and enjoy a quality of life that many people believed would not be possible.
The Importance of Trusted Support Workers
Our family has spent years building a stable team of independent support workers around . These workers are not simply providing shifts. They know her communication style, recognise changes in her health, understand her seizure presentations, support her behaviour support strategies and help keep her safe both at home and in the community.
has significant safety risks. She requires close supervision around roads, traffic and carparks. Staff regularly intervene to prevent her walking into unsafe situations. She also experiences seizures and requires workers who can recognise changes in presentation and respond appropriately. These workers know her baseline functioning and are often the first people to notice when something is wrong.
is also highly protective of her home environment. She can become distressed when unfamiliar people enter her home and can respond with agitation or aggression when she feels her space has been invaded. It has taken considerable time for her to build trust and acceptance of the people who currently support her. Familiarity, consistency and trusted relationships are critical to her wellbeing.
Concerns About Provider Registration Changes
I am concerned that expanded provider registration requirements could place participant-directed support arrangements like ’s at risk.
Our experience has been that continuity of support is one of the most important factors in keeping safe. Registered provider status does not guarantee continuity, familiarity or quality of support. In contrast, ’s current support team has developed knowledge and skills specific to her needs over many years.
Like many families, we did not choose a participant-directed model because it was easier. We chose it because traditional provider arrangements were unable to provide the consistency, continuity and individualised support that requires to live safely and successfully in her own home.
For , the ability to choose and retain trusted support workers is not simply a matter of preference. It is a matter of safety, communication, dignity and independence.
Concerns About Funding and Support Caps
I am also concerned about any future funding caps, support intensity caps or measures that could reduce support below assessed need.
currently receives support that reflects her complex needs and risks. She requires supervision and support throughout the day and night, assistance with all personal care tasks, support to access the community safely, and assistance to attend appointments and maintain her health and wellbeing.
Her successful independent living should not be interpreted as evidence that she requires less support. It is evidence that her current support arrangements are working.
Community Participation Is Essential
Community participation supports are essential to ’s safety and wellbeing. These supports enable her to attend medical and allied health appointments, maintain family and community connections, participate in activities she enjoys, exercise, improve her health and safely access her local community.
These supports are not optional extras. They form part of the overall support framework that allows her to live independently.
Current Uncertainty
Our family is currently facing uncertainty due to proposed mandatory registration changes affecting Supported Independent Living supports. has lived successfully in her own home for approximately three years with a stable team of trusted independent support workers.
We are concerned that future registration requirements could force the replacement of workers who know her communication style, health needs, behavioural support strategies, epilepsy presentation and safety risks.
This uncertainty is already causing significant stress for our family and highlights why participant-directed support arrangements require explicit protection within the NDIS.
’s current support model has enabled her to live safely in her own home for approximately three years. It reflects the principles of choice and control that were central to the creation of the NDIS. I am concerned that future changes could unintentionally undermine arrangements like ours, despite those arrangements already demonstrating positive outcomes, safety and value for money.
Conclusion
I urge the Committee to protect participant choice and control, self-directed support arrangements and the right of people with disability to choose who provides their supports.
I also urge the Committee to ensure that people with disability are not forced to abandon support arrangements that have been proven to work simply because those arrangements do not fit a traditional provider model.
Removing or disrupting effective supports does not reduce need; it increases risk. Stability should not be mistaken for reduced support requirements. ’s ability to live safely and successfully in her own home is the result of the supports around her working as intended.
’s life today reflects the goals the NDIS was designed to achieve. She lives in her own home, participates in her community and is supported by people who know and understand her. Her current stability is not evidence that she needs less support. Rather, it is evidence that her existing supports are working.
Any future reforms should protect these outcomes, not place them at risk.
Thank you for considering my submission.
Yours sincerely,
Nominee and Mother of