Submission 2565
Personal information
I am a 31 year old person with complex and severe mental illness, and I’ve been an NDIS participant since 2020. I have experienced a significant and prolonged period of stability for the first time in my life, since the onset of my illness at 14 years old. I strongly attribute my current capacity to the access that is enabled by, and the opportunity for consistent engagement with, NDIS supports.
Prior to becoming an NDIS participant, I had prolonged successive hospitalisations, I was unable to work consistently, and suffered from severe social isolation. Presently, I have maintained part time employment consistently for over four years, have a high level of self care, and benefit immensely from regular community access. I have volunteered and worked in community media alongside people with disabilities for about 5 years. In addition to my own positive lived experience with participating in community media, I have also witnessed other participants achieve fulfillment through their own community participation, exploration of education & employment pathways, and a significant increase in their sense of personal agency due to NDIS supports.
Key concerns
I have laid out my concerns about the NDIS Amendment (Securing the NDIS for Future Generations) Bill 2026 based on my lived experience as an NDIS participant, and in my professional capacity as a person with disability employed in community media. Schedule 1 – Proposed section 9B (Functional capacity) One area of concern I have in this Bill is the assessment of people with disability’s functional capacity. As a person with a dynamic disability (wherein my symptoms fluctuate significantly over time, and I can experience both periods of stability and severe illness) I believe that standardisation would miss the ways episodes impact people, like myself, with psychosocial disabilities. Similarly it may not capture the ways people with experiences of a myriad of other dynamic disability types, that can be very debilitating and present differently across life stages and changing circumstances. Even day to day or week to week, some disabilities present very differently. Invisible and hidden disabilities also may not be captured by standardised assessments.
Schedule 1 – Items 88–94 (Permanence and treatment) Another concern is the requirement of potential participants to have undergone all available treatments in order to be deemed eligible for the scheme. In my lived experience, treatment of complex and severe mental illness can be multifaceted and very challenging for patients, and is dependent on each person’s physiological responses to medications, which also carry risk of severe physical & psychological side effects. This aspect of the bill could prevent people who really need NDIS supports for their daily living and survival needs, from accessing the scheme.
Submission 2565
Proposed section 48A - Curtailing reassessments NDIS should be responsive to people’s life circumstances changing. For example, where familial supports can no longer contribute (or family members become disabled themselves) and participants face housing instability, especially during periods of financial insecurity which many people with disabilities deal with. If the NDIS administrative processes are not responsive to these changes, it risks long periods of time where participants’ supports remain inappropriate or inadequate.
Proposed section 34(1)(aa) - Abandoning ‘whole of person’ principle NDIS assessments should recognise the way that disability impacts us all differently and that multiple co-occurring disabilities can have a cumulative effect. Many people with disabilities have more than one condition or impairment, often called co-occurring disabilities. Some people have already had difficulty getting ‘secondary’ or multiple co-occurring disabilities recognised by the NDIS. It is also sometimes difficult to isolate the impacts of certain disabilities that can co-occur, and determine the extent to which they exacerbate one another. Complexity should not be a barrier to getting support.
Proposed section 59B - Automation I, like many other people with disabilities, hold serious concerns about automation of both eligibility assessments, and supports needs assessments for planning & funding. I believe independent oversight is crucial in the assessment process to uphold fairness. As explained above, the complexities of our experiences as disabled people do not easily fit into algorithms, and our vulnerabilities make it all the more important that human intervention is present. Automation is a key concern of the community, and one of the most significant changes this bill proposes, that could put disabled people at risk.
Proposed section 34A - Community access and participation As the NDIS has allowed me to engage with support workers, I have been able to experience more life outside the home. Prior to accessing the scheme, I spent a lot of time at home or in bed, leading to severe social isolation. Now I am regularly able to go get groceries or go to the laundromat with my support worker, and attend vital health care appointments consistently. I have a substantially better quality of life, measured across all domains of functioning, and a greater sense of independence. As an example, community radio stations are a place where many people, who rely on support workers for access and engagement, can have their voices heard and stories communicated to the wider community. Full participation in society is a disabled person’s human right, and in many cases, such access requires a one on one support worker.
Submission 2565
Concluding remarks
I know that for myself and many others in my community, NDIS supports are about safety, dignity and independence. The loss of supports for those who are reassessed if this Bill passes and for those who are deemed ineligible, represents something very serious. When people with high support in particular needs go without care, they are at risk of serious injury or illness, or death. Social isolation affects many Australian people, and people with disabilities in particular. NDIS must meet the needs of very vulnerable people, and ensure their care, access & community participation. The NDIS has great potential, if it is reformed with consultation and by co-design. The NDIS is a crucial lifeline for myself, and my community, and this Bill could undermine it for us, and generations to come.