Submission 1547
Submission – NDIS Future Generations Bill 2026
26 May 2026
I am a disabled pensioner and have been on the NDIS for approximately 7.5 years. I am also a single mother with two children currently studying.
To date, the NDIS has been of great benefit to me, and has helped me manage my symptoms and supported me to live with my disability.
I believe most of us agree that changes to the NDIS/NDIA are needed. However, I OPPOSE the proposed Bill on many levels. The items that concern me the most are:
- "ALL APPROPRIATE TREATMENTS?MEDICATION"
THIS IS A BREACH OF HUMAN RIGHTS. IT IS MORALLY WRONG. The government is FORCING PwD to trial all possible forms of treatment/medication before they are considered to have a permanent disability. There is no choice or control for the PwD with that. Everyone has the right to choose whether or not to take medication. It is their body. Many people suffer from the side effects from medication. And who decides how many medication/treatments are enough? Do we get suspended from the scheme when a new medication pops up? Lack of funds and living remotely ARE barriers to possible treatment/medication. This condition to access and stay in the scheme is unfair and unrealistic. IT IS DISCRIMINATION.
In my case, I have Multiple Sclerosis. It is an unpredictable, degenerative neurological disease. There is NO cure. I have a permanent disability. No amount of medication or medical treatment will change the fact that I have MS. I have a list of 26 symptoms with my major permanent symptoms as follows: debilitating fatigue, neuropathic pain, heat intolerance, incontinence/toileting issues, dysphasia, spasticity, mobility/balance issues- I am a wheelchair user. I struggle to walk, I can’t run. I am a high falls risk – I’ve had many significant falls to date. I do not take prescription medication. Does this mean that I will be kicked off the NDIS?
- CUTS TO CORE FUNDING
Submission 1547
Funding in a plan for community access is to pay a support worker to take the participant to medical/therapy appointments, meetings, social and community events, family activities and other engagements. Sometimes it’s the only opportunity that the participant has to access the community or engage with other humans. If the proposed 50% cuts to community access is passed, this will have a detrimental effect on participants, mentally, physically and socially. It will result in a decline in PwD and an increase in deaths and suicide. See attached copy of post on Facebook re suicide/VAD.
Any cuts to Core funding will also place pressure on informal supports and family members.
For myself specifically, cuts to Core funding would mean not being able to go to hydrotherapy that helps me manage my symptoms and maintains my health. It would also mean not being able to attend a medical appointment or a family activity. I would not be able to carry out my hobbies. I have been involved with local disability matters and would have to give up my disability advocacy in my local community due to lack of funds.
If I don’t have the supports I need, I am not able to complete my own personal care, prepare and cook my meals, pick up grocery shopping, clean the house, maintain the garden, wash dishes, wash and dry laundry, cut my nails and more. These are all basic, everyday human tasks that I cannot complete without my support workers. I have very little in the way of informal supports.
My family consists only of my two children who study. These cuts to supports would place insurmountable pressure on them, possible hindering them from pursuing their own careers, hopes and dreams. I would become a burden to them.
I am stressed, I am scared, I feel unsafe and fear for my future.
Cuts to the NDIA and the scheme are needed but in other areas- NOT PARTICIPANTS PLANS! The NDIA itself is wrought with over-administration, the systems have allowed for rorting and overcharging by providers. The organization needs to be overhauled. Punishing participants is unfair and so, so wrong.
Facebook Post re suicide/VAD:
Submission 1547