National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1312
Inquiry: The National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026.
Personal Submission- Sister of NDIS participant
The NDIS has enabled my brother to live safely in his own home and to live a life with greater independence, dignity, and choice. It has also enabled my brother and I to maintain a close sibling relationship, rather than one centred around me providing a high level of unpaid care. This means I can continue supporting him to manage his supports and advocate for his needs, while reducing my risk of long-term carer burnout.
Most importantly, the NDIS has provided us with the opportunity to support my brother to live “a good life” of his choosing- one where he can remain connected to his community, maintain important relationships, and participate in meaningful ways.
With the proposed NDIS reforms, I feel scared that the highly individualised support model we have built around my brother over many years may become unsustainable. We have spent nearly 20 years developing a support structure that is safe, flexible, person-centred, and responsive to his complex needs. Whilst I welcome greater regulation and oversight over providers, I worry that increasing compliance requirements and system changes may make it harder to maintain the consistency and quality of support that he relies on.
I also feel confused about the timeframes and what these changes will actually mean for our specific situation. There is a great deal of uncertainty for families like ours. At the same time, I remain hopeful that the extensive safeguarding measures, structure, and oversight we have implemented over many years will place us in a strong position moving forward through any future registration or compliance processes.
The information available about the proposed changes to the NDIS have been very general, and there is a significant amount of conflicting information circulating within the disability community. Many families, participants, and supporters are trying to understand what these reforms will mean in practical terms, but there is still a great deal of uncertainty and anxiety.
We are worried that these changes may lead to funding reductions and make it more difficult to access the flexible, individualised supports my brother needs to live safely and meaningfully in his community. I also have friends and peers with loved ones on the NDIS, and I regularly see the emotional toll that NDIA inconsistencies and uncertainty place on participants and their informal supports. I worry these issues may become even more prevalent through ongoing reforms.
Living with the constant fear of losing essential supports is incredibly stressful and emotionally exhausting for families. If social and community participation-based supports are reduced, my brother would become severely socially isolated. His ability to maintain valued roles within his family and community networks would be significantly impacted, and his overall quality of life would decline.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1312
I believe his mental health and emotional wellbeing would deteriorate, and his behaviour support needs would likely increase due to reduced connection, stimulation, routine, and participation in meaningful activities. Social and community supports are not “extra” supports for my brother- they are essential to his well-being, identity, and stability.
My brother is completely reliant on an electric wheelchair for mobility and independence. Capacity Building funding is essential to ensure he can access assessments for new equipment and maintain the supports needed to use that equipment safely and effectively. Without access to appropriate mobility equipment, my brother would lose a significant degree of independence and community access.
As he ages, supports such as dietetics, occupational therapy, and physiotherapy are becoming more important - not less. These supports are essential in maintaining his health, function, and long-term quality of life. Improved Relationships funding has also been integral in ensuring my brother’s support team can support him safely, appropriately, and in the least restrictive way possible. These supports have strengthened communication, consistency, safeguarding, and overall support quality across his team. Without access to these supports over the years, I believe my brother’s independence, wellbeing, safety, and community participation would have been significantly reduced.