To whom it may concern. I am writing this submission as a disabled individual on the NDIS concerned for the future of all participants. I wanted to share what my life is like on the NDIS and the impact the support has for me.
Each day I usually wake between 9:00 and 9:30 a.m. when support staff arrive as alarms haven’t been effective. I also have Identified regular evening shifts would help with managing evening tasks but due to a lack of funding I don’t get that. On days without support, I often wake up much later sometimes well after 2:00 p.m. depending on how my body is coping. I live with constant fatigue, nausea, pain, and other symptoms that fluctuate daily and affect my ability to function without support.
Mornings/after I wake up is slow my body usually takes a while to get used to being upright. Depending on how well my body is managing I could be able to make my coffee, be throwing up or in a severe flare up that could land me in hospital. My support workers help me to manage most basic life skills such as household chores, personal care and daily life errands. Without them I wouldn’t be where I am today and I certainly wouldn’t continue to survive without them.
When I shower, I use a shower stool for safety, but showering remains physically difficult, and I can’t often or really at all wash my hair without help. Most of the time I only manage to shower about once a week due to the fact they fatigue me so much.
I can dress myself independently for the most part apart from some zippers and buttons when my hands are stiffer and weaker than usual. For the most part I just sometimes need prompting if there are time sensitive appointments or outings.
I am able to independently complete most meal preparation, although it is often challenging due to a myriad of symptoms I experience regularly and can experience from being upright. I need support staff to be able to assist me with some physical tasks with cooking meals when asked. My support staff also sometimes encourage me to eat as I often can forget to, not feel hungry or be experiencing nausea. With cleaning the kitchen up I try to rinse dishes or load the dishwasher when I have the capacity but it’s not consistent enough without support. I also rely on support staff for most household tasks like laundry, cleaning, and vacuuming, as some physical tasks are not safe for me to do alone and when I do it can be detrimental to my health.
My support workers take me to most appointments and errands outside of my home. I do drive myself locally, but longer trips are physically taxing and require pacing and recovery time. When going out I often need support in managing symptoms, carrying heavy items, lifting my walker out of the car. I also need someone with me during appointments so they can remember what was said as I often struggle with my memory. My psychologist and OT visit me at home which is
extremely important for me seeing as my psychologist’s office is inaccessible for me due to the stairs.
Most of my time is spent at home. I connect with friends online, watch shows, or play phone games. I try to attend church when I’m well enough but I don’t get funded the weekend support hours I need. On unsupported days, I often can’t manage essential tasks due to flares or reduced capacity from ongoing symptoms. My health has continued to decline since 2021, and I now require more support to remain safely and independently at home that continue to keep me out of hospital.
I experience a range of physical, neurological, and cognitive challenges that affect my ability to manage daily life safely, consistently, and independently. I use mobility aids including a walker and/or walking stick, depending on the distance and activity. I need an electric wheelchair but I don’t have the funding for It and can’t afford one myself which makes daily life harder. My conditions significantly impact my functional capacity, including chronic pain, impaired coordination, fatigue, and the ability to manage a basic routine alone.
I currently receive formal support five days a week for three to four hours a day. I’m grateful for these vital supports, which assist with tasks such as personal care, some cooking, household activities, transport, attending appointments, and community access. I also know that these support hours are not enough and professionals on my care team agree with me that I need 7 days a week funding. While I continue to face significant challenges even with support, these hours provide a basic level of structure and safety. On days without support, I am often unable to manage essential tasks—not because I don’t want to, but because my capacity fluctuates or drops too low to do so safely.
I do not have reliable informal supports and have no choice but to manage alone most of the time. However, I have a strong online network of friends who help me manage my mental health alongside my psychologist and keep loneliness at bay. That said, no one in my informal supports can assist me regularly enough with daily living needs, transport, or care tasks. Without formal support, I would be at serious risk of further health decline, unintended self-neglect, and needing more intensive intervention down the line.
I managed to obtain a driver’s licence, which was hard but rewarding. I’m often able to drive myself around locally, which I enjoy, though it is physically challenging at times. Longer drives, however, are extremely difficult and often leave me more fatigued and in pain than usual. I occasionally make longer trips to visit close friends, which require overnight stays and significant planning. These trips involve support with packing and getting me on the road, careful pacing, and recovery time. They are not reflective of my day-to-day capacity, as they place considerable strain on my body and energy levels. Recently I am having to consider the viability of these trips due to the severe flare ups and hospital
trips I have experienced from the extreme fatigue and symptoms the long drives cause me.
I completed a Certificate III in Community Services through TAFE part-time, which required me to attend online classes three times a week. This was only just achievable thanks to consistent invaluable support from my support workers and the TAFE staff. There were times I struggled to stay awake or concentrate due to the ongoing and ever-changing nature of my conditions, along with severe symptoms and unpredictable flare-ups. Although I’m proud of completing it my health has continued to decline since then, and despite completing the course, I remain unable to work in any capacity.
Despite the challenges I face, I continue to do my best to live as independently and meaningfully as possible. Any improvements I’ve made have only been possible because I’ve had the right supports around me to keep me alive. The reality is that I live with reduced functional capacity, and consistent support is the only way I can safely maintain daily routines and avoid preventable worsening health issues. Without adequate support, the risks to my wellbeing both short and long term increase significantly.
With the proposed cuts this bill introduces it would cause a significant impact to my health and a negative effect on the public healthcare system. So many disabled individuals would end up in hospitals if their funding got cut. We see that happening now. We need to do better for all disabled individuals.