1 June 2026
To the Committee,
I am writing to share my concerns regarding the upcoming changes to the NDIS and the impact they are having on people like myself and my daughter. The uncertainty around these changes have caused me significant stress and anxiety and I have not been sleeping properly because of it. Stress is also a trigger for relapses in my Multiple Sclerosis.
One of the hardest parts of the NDIS process has been the way participants are sometimes spoken about during plan reviews. At times it feels very dehumanising, as though our lives and experiences are being reduced to paperwork and budgets rather than being understood as real people with complex needs.
Before becoming an NDIS participant in 2019, I worked most of my life. I started working at around 16 years old and for many years I worked two jobs while also studying. If I had the ability and choice, I would absolutely return to work.
In 2004 I completed my Diploma in Childcare and became a childcare teacher. At the time I was working at KFC nights and weekends while also working in childcare during the day. Toward the end of that year I became pregnant with my son.
During my pregnancy I became aware through the media that staffing cuts by the government at the time were occurring in public hospitals, including the hospital where I was due to give birth. When I went into labour, eight days overdue, I was initially turned away and later returned. During labour I was left alone for an hour with only my support person present. Eventually staff returned and discovered my son had gone into distress and had passed away.
The trauma of losing my only child during labour at 23 years old had a profound impact on my life. I mention this because the current discussions around cuts, restrictions and misinformation surrounding the NDIS are bringing back many of the same feelings I experienced at that time; fear that vulnerable people are not being properly listened to or cared for.
After losing my son, I took several months away from work to cope with my grief. Although I could no longer continue working in childcare, I still returned to the workforce in other roles and continued paying taxes while often working more than one job.
In 2008 I was diagnosed with Relapsing Remitting Multiple Sclerosis. Despite the challenges, I continued working for approximately another 10 years. During this time I also studied Medical Administration and completed a Certificate III in Individual Support because I wanted to work in healthcare and support others. I had wanted to become a support worker long before the NDIS existed.
In 2018 I became pregnant with my daughter. During pregnancy I had to stop my MS medication and experienced relapses which increased my cognitive difficulties, fatigue and executive functioning issues. At that time my mother was my informal support, however due to her own health and life circumstances she is no longer able to provide the level of assistance I need.
The NDIS has allowed me to continue living independently and safely while raising my daughter.
When my daughter was around four and a half years old, I noticed significant anxiety and emotional regulation difficulties. Because of my background in childcare, I recognised these concerns early and sought help through her kindergarten and the Benevolent Society. The early intervention supports she has received have made a huge difference to her life.
At one stage her anxiety became so severe that simple things, such as seeing a parked ambulance near a neighbour’s house, would leave her terrified to leave or return home. She became highly distressed over routines, fearful around neighbours, and would constantly check doors and windows because we live close to Prince Charles Hospital and could hear ambulances regularly. With the right supports, she has improved enormously over the past year however there are still a lot of anxieties and barriers that we are working on that affect our everyday life and self-care needs.
I strongly believe that reducing or cutting supports for either myself or my daughter would significantly impact our ability to function in daily life and participate in the community.
Living with MS for more than 10 years has also shown me how misunderstood invisible disabilities can be. Although I may “look fine” externally, the mental and physical fatigue can be debilitating. Before having support workers assist me, even basic activities such as grocery shopping became overwhelming and exhausting and I experienced more frequent falls.
I have also more recently been diagnosed with CPTSD and Autism Level 2.
My support workers play an important role in helping me manage fatigue, executive functioning difficulties and daily responsibilities. As my fatigue worsens throughout the day, they help recognise when I need rest, reminders to eat, assistance with tasks and support to reduce overload. These supports help prevent deterioration in both my physical and mental health.
I am also very concerned about funding blocks and tighter restrictions being introduced for people with fluctuating conditions such as Relapsing Remitting Multiple Sclerosis. My needs can vary greatly depending on my health, fatigue levels and relapses. Flexible supports are essential for managing a condition that is unpredictable by nature.
I would also like it acknowledged that due to my disabilities, cognitive fatigue and executive functioning difficulties, I required support to put together and collate this submission. Being able to communicate my experiences clearly in writing is not always something I can manage independently, particularly when under stress and discussing traumatic experiences.
This is another example of why appropriate supports are so important. Without assistance, many people with disabilities may struggle to have their voices heard in consultations and decision making processes that directly affect their lives.
I ask that the government remembers that behind every plan is a real person, a family and a life story. Many of us have spent years contributing to society, working, paying taxes and caring for others before needing support ourselves. The NDIS has allowed me and my daughter to live with greater safety, dignity and independence and I hope future changes do not take that away from vulnerable Australians.
I am very concerned about how the proposed NDIS changes may affect both myself and my daughter. Living with Relapsing Remitting Multiple Sclerosis means my symptoms and support needs can change from day to day and week to week (not to mention my other conditions that I have outlined earlier). I worry that the new changes may not take this into account. I am also concerned that reduced access to supports and early intervention services could affect the progress my daughter has made and impact both of our wellbeing significantly. The supports we currently receive have made a huge difference to our lives and I worry about what the future may look like if these changes go ahead.
Thank you for taking the time to read my submission.