National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1790
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 18
29 May 2026
To: Committee Secretary, Community Affairs Legislation Committee
Dear Committee Secretary,
I am a NDIS participant, a mother for 2 Autistic participants and a daughter of a very disabled participant. I am exhausted! I am thankful for how the NDIS has provided for us over the years, however I have also devoted my life to advocating and caring for my family while trying to keep up with NDIS expectations.
My Mother has lived in hospital for 1 year now while applying for SIL funding multiple times. You see you can’t get a report to document her capacity function at night when there is no-one with for her to write the reports. And then the hospital will not write a report that is substantial for NDIS and they are not interested in submitting evidence that NDIS require to apply for supports. The hospital Liaison Officer has been unhelpful and basically told the hospital that she can’t get SIL. And the hospital are not interested in listening to my Support Coordinator or Disability Advocate.
So If you take away support coordination then my mother will have to live in hospital forever? If you take away social and community supports, does that mean that she is never going to be able to leave the hospital? I can’t do everything. I am so overwhelmed.
Why is so much being spent on ART instead of the disabled person. My mother has had many near death experiences during the night without NDIS support. It is not the hospitals responsibility to provide 24/7 care for participants, but they are.
Without Social and Community supports, I have to take my mother and my children to hospital appointments and therapies and to the shops. I mean we don’t actually use Social funding for social…we don’t have time or energy for a social life. My life is just trying to get all the basics covered and not enough time to cook or look after myself and my list of cares are never ending and banking up.
If my mother lost her Social and Community supports, you are just putting more pressure on me! I am disabled too. I am suppose to be supporting my children, however I have to support my mother first due to her complicated disabilities and the fact that she is in hospital with not enough support. She can’t swallow very well and struggles with the hospital food. She needs a support worker to take her shopping to buy food that she can eat. She needs a support worker to cook food that she can swallow.
How am I suppose to be in 5 places at once?
The only thing that I do for myself is use my Capacity Building once a week. I need this to keep functioning so I can then care for my family. If I don’t look after me, then who will look after them when my mind and body fails. Surely this is cost effective for the future of NDIS?
My son can’t go to school because the education system does not provide for disabilities that don’t fit into the public system based on behavior or the special school system needing a very low IQ to qualify. He is missing out on normal social interactions. As he grows older I want him
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 Submission 1790
to be independent in the community and not being tied to a parent. I am sorry he may not fit into a regular box, however he should still have opportunities that others take for granted. Again I am also disabled, I am also a carer and children don’t want to be in the presence of their parents 24/7 at home for the rest of their lives. He needs Social and Community supports and even more so when he is an adult.
What are we going to choose to spend our Capacity Building Funding on? Supports that increase our functional capacity or reports describing our needs for functional capacity? Hmm….
What are we going to choose to spend our Core Funding on? My mother will not have a supported shower or breakfast today, so she can save up and use the Daily Activities funding to attend the 3 hour appointment?
Regarding “permanence” in relation to disability. Are you serious? So if we have a permanent disability we have to prove that it’s permanent because you don’t believe the doctors? So we have to do treatments to prove it and if the treatments work then it’s a miracle from God and NDIS saves money. And if we can’t afford the treatments or they are just impossible or are illogical or cause trauma, then you are calling us liars? And NDIS saves money.
Why do disabled people have to work so hard. I thought the point of being disabled was that we don’t have function capacity to keep up with healthy people, therefore needing supports.
Nothing makes sense and I am not a car that needs insurance…I am a person that needs care.