Submission 2016

My name is and I am an NDIS participant with a very rare progressive neurodegenerative disease that causes significant physical disability, severe vision and hearing impairment, serious balance and proprioceptive impairment, and functional limitations across many aspects of daily life.

The NDIS has allowed me to live quite an independent and meaningful life despite substantial disability. It has funded supports that help me maintain my physical functioning, communicate effectively, participate in the community, and avoid much higher support needs in the future.

Because of this, I care deeply about the future of the NDIS.

I want to be clear that I support efforts to make the NDIS financially sustainable. The scheme must remain viable for future generations of disabled Australians, and I support measures that reduce waste, overcharging, fraud, and ineffective spending.

However, I do not support this bill in its current form.

My concern is that the bill appears to focus heavily on reducing expenditure and increasing administrative control while reducing the flexibility and individualised decision-making that make the NDIS effective.

My own circumstances demonstrate why this matters.

I cannot grip anything with my right hand and have about a 1/5 grip strength in my left hand. I cannot raise my arms above shoulder height and I have very short windows of time in which I can do things with my arms and hands before this ability collapses and I need long rest periods before these muscles will function again. I cannot safely navigate roads, car parks, stairs, escalators or many environments independently due to severe proprioceptive impairment. This proprioceptive impairment means I have zero capacity to stand, walk or even sit still in low-to- dark lighting environments, which occur in a surprising amount of daytime scenarios.

I rely heavily on lip reading to communicate, even with a cochlear implant, and require Auslan interpreters for specialist appointments. Without my cochlear implant I have no meaningful speech recognition. Even with it, lip reading remains essential for effective communication in most situations.

Despite these significant disabilities, I am relatively independent because I receive the right supports.

In particular, weekly specialist neuro rehabilitative physiotherapy has been critical in maintaining my mobility and function. This is not a recreational service or an optional extra. It is a preventative support that helps me remain independent and reduces my need for more intensive supports. This is my only safe gym or exercise equivalent.

If access to supports such as physiotherapy is restricted through standardised limits or inflexible funding decisions, my needs will not remain stable. They will increase substantially.

Submission 2016

Without ongoing intervention, I am at risk of avoidable physical decline, increased dependence on mobility equipment, and greater reliance on support workers for everyday activities, including a significant increase in personal care funding. The long-term cost of these outcomes would far exceed the cost of maintaining effective preventative supports now.

This is why I am concerned by discussions around standardised limits on therapies and supports. My independence is not evidence that I have low support needs. It is evidence that my current supports are working.

If those supports are reduced, my disability does not become less severe. My support needs become greater. Any assessment of sustainability should consider not only the immediate cost of supports, but also the cost of removing supports that are currently preventing higher future expenditure.

I am also deeply concerned about proposed reductions to social and community participation supports.

Community participation is sometimes discussed as though it is an optional extra. For me, it is not. Because of my severe proprioceptive impairment, I cannot safely navigate many public environments independently. I cannot safely cross roads or car parks alone and many everyday community activities require support to be completed safely.

These supports allow me to attend appointments, meet friends and family, access the community safely, go shopping, run errands, and participate in everyday life despite my disability. My participation is also affected by significant communication barriers. Even with a cochlear implant, I rely heavily on lip reading and often require communication supports such as Auslan interpreters to access services and appointments effectively.

Reducing these supports would not increase my independence. It would reduce my ability to participate in everyday life, increase isolation, and place greater pressure on family and informal supports.

For example, something as simple as meeting a friend for coffee would no longer be possible because I wouldn’t have the support required to get to the cafe, cross the car park, enter the building and order, pay and sit down safely. All these little steps are also applicable to attending appointments, and running errands. Without that support, many of these activities would either not occur or would require me to rely on family members to accompany me which is rarely a possibility. I don’t want to lose friendships because I can’t be present due to social and community participation funding cuts. The prospect of becoming increasingly isolated and disconnected from my community is something that genuinely worries me.

Like physiotherapy, community participation supports are preventative. They help me maintain the independence I currently have and avoid greater support needs in the future.

Submission 2016

I believe many people reading my circumstances would assume I would obviously continue to qualify for necessary supports. However, that assumption depends on participants retaining the ability to meaningfully challenge decisions, provide individual evidence, and have their real-world circumstances properly considered.

My concern is not simply that supports may be reduced. It is that the proposed reforms appear to significantly reduce participants’ ability to dispute inappropriate funding decisions or demonstrate why standardised limits do not reflect their actual needs.

I am particularly concerned about provisions that may allow the NDIS up to 90 days to respond to reassessment requests and other concerns. While this may seem reasonable from an administrative perspective, it does not reflect the reality of living with disability.

My disability does not pause while administrative processes occur. If a necessary support is reduced, delayed, or removed, I still need that support every day while waiting for a decision.

For someone in my situation, a funding gap can mean deterioration in physical function, loss of independence, reduced access to healthcare and community participation, and increased reliance on informal supports.

If my supports are reduced and I am required to wait months for a review or reassessment outcome, the practical alternative is not independence. It is asking family members to absorb responsibilities that the NDIS has already assessed as disability-related needs. I do not believe this is a meaningful safeguard for participants with significant disabilities.

Disability is complex and highly individual. Functional capacity cannot always be accurately captured through standardised processes, benchmarks, or assumptions. I need meaningful opportunities to explain my circumstances and challenge any decisions that do not reflect reality.

Finally, I am concerned about increasing rigidity around funding periods and unspent funds.

As a participant, I often need to budget funding carefully across an entire plan period. Temporary underspending does not mean I no longer need support. It often means I am trying to ensure funding remains available when I need it later.

The proposed changes risk penalising responsible budgeting and may force participants to reduce or delay supports for administrative reasons rather than because their needs have changed.

I also self-manage my NDIS funding. This is a choice I value greatly, but it is also one that reduces costs to the scheme.

By self-managing, I avoid the need for funded plan management and directly employ my own support workers. This allows me to obtain high-quality support at a lower overall cost to the

Submission 2016

A scheme than many traditional service models. It gives me flexibility while also allowing me to achieve better value from the funding that has already been allocated to me.

In many ways, I am already contributing to the sustainability of the NDIS. I carefully budget my funding, seek value for money, and make decisions that help stretch supports further without compromising outcomes.

My concern is that some of the proposed reforms may unintentionally undermine participants who are already using the scheme efficiently. If my independence declines because preventative supports are reduced, I will require more support, not less. Over time, I may also lose the capacity to continue self-managing effectively.

This would create additional costs through increased support needs, greater administrative involvement, and potentially the need for funded management arrangements that I currently do not require.

I believe the NDIS should encourage and preserve models that allow participants to remain independent, exercise choice and control, and use funding efficiently. Self-management is one example of how participants can contribute positively to the long-term sustainability of the scheme.

I support a sustainable NDIS. However, sustainability should not be achieved by reducing supports that are already preventing higher future costs.

The NDIS has allowed me to live independently despite a rare progressive neurodegenerative disease. That independence exists because my supports work.

My concern is that the proposed reforms risk treating that independence as evidence that the supports are unnecessary, while making it harder for participants to challenge decisions that do not reflect their individual circumstances.

I urge the Committee to ensure that any reforms preserve genuine individualised decision-making, meaningful review rights, and access to preventative supports that maintain independence and reduce long-term costs.