National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1247
Hello,
I write to express my serious concern regarding the proposed NDIS Futures Generations Bill.
I am the grandparent and primary carer of my 12-year-old granddaughter, who lives with multiple, complex disabilities. She is 160cm tall and has a genetic disorder, intellectual disability, profound autism, physical support needs, a severe language disorder, and sensory vision impairment. She also exhibits severe impulsive behaviours that can place both herself and others at risk.
As a result, she has been unable to attend school safely, and for the past five years I have supported her at home full-time — not only as her sole carer, but also managing her education, accommodation, medical care, disability needs and all of her financial needs.
Caring for her is a full-time responsibility. I am deeply committed to giving her the best life possible, but I can only manage this because of the support we receive through the NDIS. The funding for disability capacity building, daily living assistance, and community access allows her to develop skills, stay connected to the community, and remain safe.
This support also makes it possible for me to participate in the workforce. I long to be an active member of the workforce, which assists us to be less of a burden to the government and community, assists with my mental health and connection to the outside world, which assists me to be a better carer. Without adequate NDIS support, I would have no choice but to stop working entirely in order to care for her full-time, as there are no safe or appropriate alternatives for her care. Without the support from NDIS, we would be totally isolated from everyday living, and the community.
Given our experience, the proposed changes — particularly the power to reduce or remove funding without a right of appeal — are extremely concerning.
Families like ours rely on being able to explain our circumstances and challenge decisions, especially when NDIS human error may have our information incorrect which has occurred many times during the past 5 years, NDIS information on hand that may have NOT been updated which has also been our experience, and therefore NDIS recorded information may not reflect the reality of our daily lives. Removing that right to appeal or request information be corrected and then decision reassessed against the correction information, takes away a fundamental sense of fairness and accountability.
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1247
NDIS have made numerous errors in our NDIS Journey, which if the Bill had of been passed at those times, I would have had to relinquish care of my granddaughter to ensure my safety and the safety of others.
Without adequate NDIS support, I fear I will no longer be able to safely care for my granddaughter at home. This is not a distant possibility — it is a very real and distressing concern and a much higher long-term cost to the government.
I urge you to carefully consider the impact of this legislation on carers and families like mine, and to oppose it unless it is amended to ensure fairness, transparency, and the right to be heard.
Thank you for your consideration.
Kind Regards,