Concerns regarding potential impacts on overnight support worker access and university participation (Participant experience)

Submission 2641

Submission on the NDIS Amendment Bill

Name:

I am a: ☑ Disabled person

1. Introduction / my connection to this issue My name is , and I am a 23-year-old university student from Adelaide who lives with Ullrich Congenital Muscular Dystrophy. I use an electric wheelchair and depend on the National Disability Insurance Scheme for nearly every part of my daily life.

Without support workers funded by the NDIS, I cannot shower, get dressed, reposition myself, attend university, travel independently, or participate in my community. The support I receive is not a luxury. It allows me to live with dignity and safety.

I fought for many years to receive the level of funding and support I now have because of this support, I can attend university, engage with my community, advocate for accessibility, and start creating pathways toward future employment and independence. Without this support, accessing many of these opportunities would be extremely difficult or almost impossible.

I am submitting because I am deeply concerned about how the proposed changes in this Bill may affect people like me who rely on the NDIS every day.

2. My overall position on this Bill ☑ I have serious concerns

I understand the importance of ensuring the NDIS remains sustainable into the future. However, I am concerned that the changes proposed in this Bill may increase administrative pressure on participants, create uncertainty around supports, and make it harder for disabled people to maintain the assistance they need to live safely and independently.

I am particularly concerned about changes relating to participant engagement requirements, administrative compliance, reassessments, and the potential for people to lose supports due to system-driven processes.

I ask that the Government substantially amend this Bill to strengthen protections for participants and ensure disabled people are not disadvantaged by administrative, funding,

Submission 2641

or communication changes.

3. My key concerns I also need support workers for overnight shifts so I can sleep safely and comfortably. Due to my physical disability, I require help with repositioning and other needs overnight to avoid pain, discomfort, and strain.

Sleeping through the night comfortably and safely is something many take for granted. For me, this is only possible because I have trained and trusted support workers funded through the NDIS.

I cannot just have any support worker. Over time, I have built a team of people who understand my body, routines, communication, medical needs, and how to support me safely.

These workers were not chosen randomly. They are capable of providing the specific care I need. They know how to reposition me safely, assist me without causing injury or pain, and recognise when something is wrong.

Building this level of trust and experience takes years, and it is crucial for both my physical wellbeing and sense of safety.

I worry that changes to funding, reassessments, or support categories could put essential supports like these at risk.

The NDIS has also helped me pursue higher education as a university student. Without this support, attending university would be nearly impossible for me. I would likely isolate myself at home and be unable to engage fully in education or community life.

I will complete my bachelor’s degree at the end of this year, and I hope to continue my education next year with either an Honours or Master’s degree. However, I worry that if funding for community participation and support decreases, I may no longer have the capacity to pursue these opportunities.

Further study involves a heavier workload, more fatigue, and sometimes placement requirements that need additional support and energy to manage. The help I currently get does not just make university easier. It makes it accessible.

Beyond university, the NDIS has allowed me to create a social media platform focused on disability and accessibility. On this platform, I review venues, events, and accessibility from a wheelchair user’s perspective. This has helped me advocate for accessibility, connect with my community, develop professional skills, and explore flexible employment options that

Submission 2641

suit my disability and fatigue levels.

These activities are often seen as non-essential, but they play a significant role in my independence, purpose, social connections, and future opportunities.

Managing disability already requires navigating appointments, therapies, support workers, equipment, funding processes, and communication with multiple services.

I am concerned that increased administrative requirements may place additional pressure on participants who are already managing significant health and disability-related responsibilities.

Many disabled people rely on family members, carers, support coordinators, or support workers to help manage communication and paperwork. If communication is missed because of illness, fatigue, hospitalisation, or other circumstances, people should not be at risk of losing the supports they depend on.

I am particularly concerned about provisions relating to participants being considered “not contactable.”

Disabled people may be temporarily unable to respond for many reasons. They may be in hospital, experiencing illness, burnout, mental health challenges, housing instability, communication barriers, or disruptions to their support arrangements.

In these situations, people often need more support, not less. I am concerned that participants could be unfairly disadvantaged during periods of crisis when they are least able to navigate complex administrative requirements.

4. My lived / professional experience Living with Ullrich Congenital Muscular Dystrophy means that support is part of nearly every aspect of my life.

The NDIS has allowed me to access education, participate in my community, build social connections, advocate for accessibility, and begin creating pathways toward future employment.

Without this support, I would have far fewer opportunities to participate in society and pursue my goals.

The support I receive is not excessive. It is what allows me to live safely, maintain dignity, and contribute to my community.

Submission 2641

5. What I believe this Bill gets wrong I believe this Bill risks focusing too heavily on administration, compliance, and cost management without fully recognising the real-world consequences for disabled people.

When discussions arise about cutting costs in the NDIS, I worry that people with disabilities will be seen mainly as financial burdens rather than as individuals trying to live meaningful lives.

For many participants, supports are not optional extras. They are what make education, independence, community participation, safety, and future opportunities possible.

The NDIS does not just help people survive. It allows people to participate in society.

6. What needs to change or be protected

• Essential daily living supports

• Overnight support arrangements

• Access to trusted and experienced support workers

• Supports that enable education and future employment opportunities

• Supports that allow community participation and social inclusion

• Strong safeguards against participants losing supports because of communication difficulties or administrative processes

• Meaningful human review of decisions that affect participants

• Ongoing consultation with disabled people regarding future reforms

7. Final statement The NDIS has allowed me to attend university, advocate for accessibility, contribute to my community, and build a future for myself.

Without these supports, many of these opportunities would not be possible.

The NDIS does not just help me survive. It allows me to be part of society, pursue my education, contribute to my community, and have goals for my future.

I urge the committee to think about the experiences of people who rely on these supports every day when making decisions about the future of the NDIS.

I ask that the Government substantially amend this Bill to protect the rights, safety, independence, and participation of NDIS participants.

Submission 2641

I ask the committee to consider my lived experience when reviewing this Bill.