National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2144
Submission regarding proposed NDIS changes
My name is redacted: s38 - Material obtained under secrecy provisions and I am an NDIS participant living in Victoria with advanced Limb Girdle Muscular Dystrophy, a progressive neuromuscular condition that severely affects my strength, mobility, breathing, and independence. I rely on significant daily support to remain safely at home. I use a wheelchair, hoist transfers, specialised equipment, overnight ventilation, and assistance with most aspects of daily living including personal care, transfers, pressure care, meal preparation, and accessing the community. Due to the progression of my condition, I spend much of my time in bed and require consistent support throughout the day and night. My husband is 75 years old and is currently living with stage 4 cancer and receiving palliative care support. Due to his own serious illness, he is unable to provide physical care for me. I self-manage my NDIS plan and responsibly engage independent support workers to meet my daily support needs. I work hard to manage my plan budget carefully and sustainably while maintaining continuity of care with experienced workers who understand my complex physical needs and equipment requirements. The supports I receive through the NDIS are not optional or excessive. They are essential supports that allow me to remain safely at home, avoid injury and hospitalisation, manage my disability, and maintain some quality of life and connection to the community.
I am deeply concerned about ongoing NDIS changes and the reduction of supports for people with significant disabilities and complex needs. For people like me, funding decisions are not just numbers on a page — they directly affect safety, health, dignity,”“and whether we can continue living in our homes. Without adequate support funding, I would be at serious risk of unsafe care arrangements, hospitalisation, social isolation, and premature entry into residential or aged care settings. This would be devastating personally and would likely place greater long-term costs on the health and aged care systems.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2144 Self-management has allowed me to use my funding responsibly and flexibly while developing a stable support team tailored specifically according to your requirements. I request from government officials recognize, The significance associated directly towards individuals who are actively involved in managing their own affairs within this framework, ensuring that any forthcoming changes made under the umbrella term ‘NDIS’ should never compromise upon those persons having more complicated conditions being able to continue residing securely inside their homes provided they possess adequate assistance.