National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2558As a mother of two children in their early 20’s who have been diagnosed with Stargartz Disease ….a disease of the eye which causes degeneration of the macular, I would like to express my concerns with the changes this bill will make to the NDIS. This disease is very random in its impact with no rhyme or reason to when vision will decline, at what rate, when it may hold and when it may re-ignite the decline. My two children are presenting very differently with regards to the disease. My son has experienced very rapid decline over just three years, resulting in severe loss of vision in a short space of time. Aside of the physical changes that have robbed him enormously of independence and requires unfathomable adjustment to how he approaches life - his greatest challenge currently is coping mentally with losing his ability to see. To go from normal vision to legally blind in three years has left him battling depression, anxiety for any kind of working life and feelings of helplessness. I am concerned that any type of assessment other than professional human judgement could ever identify the complexity and individual nature of his needs and required treatment. The ever changing impact of this disease means his needs will also be ever changing, therefore making regular re-assessment essential. My daughter too, cannot afford to be lumped into a given category, as illustrated by my son’s case….she could suddenly find herself in the situation of rapidly losing sight. Her capacity to function independently could suddenly be stolen from her, as rapidly as has happened to my son. I firmly believe that without the right professional, human support we will be fighting a losing battle with depression…one that has me living in fear every day of my life. The same said support can be the only way my adult children can hold onto or re-discover the self-belief to be able to lead a satisfying, meaningful life. In short, my children’s quality of life will be dependent on complex assessments requiring emotionally, empathetic human judgement that are also sensitive to changes that cannot be anticipated.
Thank you for your time.