National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1678
To Whom It May Concern,
My name is . I am 62 years old and the mother, carer, advocate, and emotional support person for my daughter , who lives with severe and complex disabilities including Hypermobile Ehlers-Danlos Syndrome (hEDS), POTS, Mast Cell Activation Syndrome (MCAS), PTSD, and heart complications.
I am writing this submission because I need decision-makers to understand that the impact of changes to the NDIS does not stop with the participant. These changes deeply affect families and carers who are already carrying enormous emotional, physical, and financial burdens.
Over the years, I have watched my daughter lose much of her childhood and young adulthood to illness. I have watched her go from being a bright young girl to becoming bedridden, isolated, frightened, and hopeless because of conditions that many people still do not understand.
As her mother, there is no clocking off from this role.
At 62 years of age, I am exhausted. The ongoing stress, fear, advocacy, paperwork, financial pressure, and emotional responsibility have taken a significant toll on my own mental health and wellbeing. I live in a constant state of anxiety about ’s future and whether the supports keeping her safe and stable will continue to exist.
Recent changes already made to ’s NDIS plan have created enormous strain for our family. Supports have become harder to access, harder to justify, and increasingly uncertain. Instead of feeling supported, we feel like we are constantly fighting to prove her worth and defend her right to basic care and quality of life.
The financial impact has also been devastating. When supports are reduced, the burden does not disappear — it simply shifts onto families. I find myself covering costs, providing more unpaid care, sacrificing my own health, and living with overwhelming stress about how long I can continue doing this.
I worry constantly about what will happen as I grow older.
I also live with the daily fear of what will happen to if further cuts occur.
Without adequate supports, is at serious risk of deteriorating both physically and mentally. Isolation, loss of routine, reduced therapies, and lack of community connection would not simply inconvenience her — they would fundamentally endanger her wellbeing and stability.
The supports she receives are not luxuries. They are the difference between participation and isolation, hope and despair, stability and crisis.
People often talk about “capacity building” as though it is optional. For , these supports are what allow her to maintain any level of independence, confidence, emotional resilience, and connection to the world around her. Without them, I fear she would go backwards rapidly.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1678
What frightens me most is the loss of hope.
When a person has spent years fighting chronic pain, disability, trauma, medical gaslighting, and isolation, hope becomes fragile. The NDIS has given some hope that life can still hold meaning, purpose, and connection despite her disabilities.
If these supports continue to be cut away, I genuinely fear for her mental health and safety. I fear she will begin to believe there is no future, no support, and no reason to keep fighting.
No mother should have to live with that fear every single day.
The emotional burden carried by carers and parents is enormous, yet so often invisible. We are expected to hold everything together while navigating systems that increasingly feel adversarial rather than supportive.
I ask those making these decisions to remember that behind every funding cut, policy change, and legislative amendment are real families already living under immense strain.
The NDIS was meant to provide support, dignity, and opportunity for people living with disabilities. It should not become another source of fear, trauma, and uncertainty.
Please do not abandon people like , or the families doing everything they can to keep their loved ones safe, supported, and alive.
Sincerely,