Submission 2198

Committee Secretary Senate Standing Committees on Community Affairs

PO Box 6100 Parliament House Canberra ACT 2600

Submission to the Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

deeply grateful thus far for the support the NDIS provides my family. In summary, here are the points I would like to be considered:

Household Impact

As a single parent carer, the NDIS is vital to my family - I have no other family or community support. Without the support our family receives through the scheme, our small household would not function. It provides essential support that allows us to manage day-to-day life.

I am extremely worried about what the future holds for my daughters and their ability to live independently. The recent announcement of these proposed changes to the scheme is already affecting their mental and physical health and contributing to increased stress for our household and my ability to manage as their carer. (For instance, past plan reviews - to prove their limited functional capacity have contributed to suicidal ideation and self-harm.)

Carer impact

I am concerned how we will manage if we no longer have access to the scheme. What will happen to them when I age and eventually pass on? I need to know that my daughters will be supported to function in society and live independently when I am no longer here to care for them. The NDIS should be a bridge to that independence, not a system that makes it harder to achieve.

Submission 2198

In addition, many carers of people with disabilities (mostly women) are already struggling. Not only do we provide many unpaid hours to society, but we also experience fatigue due to the 24/7 nature of our role. Without access to the scheme and an uncertain future for those we care for, we face the real possibility of:

• Carer burnout and further burden on the health and welfare system as our individual needs increase.
• Reduced capacity to earn income - resulting in further cost-of-living pressures both now and into the future.
• Social isolation and declining physical and mental health and wellbeing - due to limited participation in the workforce and community.
• Gender inequity and inclusion - without these supports for our loved ones, many women and people from a diverse range of backgrounds will be unable to contribute and participate in community and civic life. Thus robbing our community of the unique perspectives and lived experiences that people with disabilities and their carers bring.

Functional capacity definition and assessment

I am deeply worried that a blanket rule to remove a certain number of people from the NDIS without considering the professional assessment and subject matter expertise from their clinicians and treating team is short-sighted.

Whilst the scheme needs a review and overhaul, current participants should not be penalised - especially when alternative systems and support to divert them from the scheme do not exist. The bill’s proposed changes should not be enacted until these are clarified. This includes the lack of transparency around the definition of functional capacity and the nuances of the assessment/plan process.

The process to access the scheme and prove ‘functional capacity’, is cumbersome, costly, time-consuming and inequitable for many participants and their carers. We have been waiting six months for an additional condition to be added to one daughter’s plan review and are out of pocket $1000 to provide supporting documents that may be knocked back. Her functional capacity assessment also expired due to this lengthy process and another one was drafted at the NDIS’s expense.

Other issues to be considered before the passing of this bill include:

• Better awareness and recognition that many participants/potential participants have dual/multiple diagnoses.
• Participant/potential participant limitations to access clinicians and funding to provide the required paperwork to meet NDIA requirements.
• Flexible approach (‘one size doesn’t fit all’) - participant conditions and their functional capacity can change.
• Plans need to be age and developmentally appropriate. This is particularly the case for young people as they grow and develop from children to young adults. Treatment and

Submission 2198

support options need to adapt as new diagnoses and conditions limiting functional capacity emerge. In our case, new genetic conditions have not been included in plans/reviews due to limiting current NDIA processes where bureaucrats are making decisions on whether to accept/decline plans/reviews when supporting evidence by clinical experts has been provided. -​ NDIA limited understanding of conditions and their support options and inconsistency around processes. Such as the definition of ‘health condition versus disability’ and how they intersect and overlap and how all treatment options must be exhausted before a plan may be considered. For instance, my daughter has a diagnosis of Ehlers Danlos Syndrome that is life long, disabling and yet, is not on her plan. A detailed, costly assessment from clinicians has not been accepted even though it stipulates that my daughter is severely malnourished and at risk of requiring feeding tubes and has limited mobility from muscle wastage. To support her needs, she requires dietary support and mobility aids and equipment that have not been funded to date.

Support for capacity building and community participation

I am deeply concerned about the future, particularly regarding the proposed changes to capacity building and community participation supports. Without these, my daughters will be socially isolated leading to increased reliance on the health system. I can already see this happening as their conditions prevent them from building social and community connections, which is the norm for most young people.

Limiting access to these critical supports actively drives social and economic inequity. When individuals are denied the necessary scaffolding to engage with the world, their ability to participate in community is severely restricted. For instance, how will my younger daughter learn to build confidence and trust to find and keep a job? How will she learn to trust others and gain independence to move out of home if these supports aren’t there?

Furthermore, a system that fails to support diverse needs effectively suppresses the visibility of different lived experiences. True societal inclusion requires a robust NDIS that acts as an equaliser, ensuring that a person’s background or level of disability does not dictate their capacity to contribute to society.

Rather than bandaiding the system, let’s develop it holistically for future generations. Deferring to state government and other jurisdictions to pick up the pieces will lead to further system inadequacies without strategic forward thinking solutions involving the perspectives of people with lived and living experience.

From our experience, before accessing the NDIS, my daughters were referred to psychosocial supports within a community setting that were completely inadequate for their individual needs - they were targeted to older adults not younger ones.

Functional supports need to be well established and funded with appropriate staff and resources, close to home and not dependent on budget bids that provide block funding dished

Submission 2198

out to local communities or NGOs without appropriate backing and commitment from the government. These services were piloted and eventually defunded as they did not attract participants or the appropriate workforce to support it.

Improving NDIS equity

Instead of punishing participants, develop innovative cost-saving solutions such as better checks and balances, procurement of service providers and their fees. Investigate ways to provide equitable access to the scheme, such as assessing participant supports already in place or means testing participation. Surely, a two-parent household with a higher income-earning capacity and caring for one person would have greater access to supports than a single participant or a single parent/carer who has limited income-earning capacity and is caring for more than one person.

While I understand the need to secure the NDIS for the future, any changes should be developed with people with lived and living experience. We must protect the long-term independence and safety of vulnerable participants. We need a scheme that gives families certainty, not one that leaves us anxious about how our children will survive without us.

A fair system should ensure everyone has the same chance to belong and contribute, rather than forcing families into isolation.

Thank you for taking the time to read my submission and for listening to the families who rely on this scheme every single day.

Kind regards,

Carer constituent

Ascot Vale

PS: I wish to apologise for the standard of this submission. I was unable to provide a more succinct response due to the limited time provided to rush this bill through Parliament.