National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2585
Honourable Senators
Please allow time to make the NDIS sustainable in the right ways to enable all those who have been benefiting to continue the care they have successfully arranged.
Certainly there needs to be a curtailing of excesses but please leave the main purpose intact. I have spent 25 years building a life away from involuntary, police assisted, lengthy hospitalisations for my family member.
NDIS has enabled moving to Community Housing from Hostel living. With one to two hours support on week days, linked with psychology fortnightly, he has been 7 years without Mental Health hospitalisations.
I don’t think I can muster energy to go through all the setting up process of proving again that this support is needed; and convincing him to undertake the testing again together with negatively focussed interviews as basic daily functioning. All the while dealing with the monitoring daily health needs and interpreting what he can and can’t manage that day and communicating that to those who need to know. The daily emails and phone calls to maintain what we already have for both of us are stressful and time consuming for me even with a 30 year social work background and 14 year teaching background, I find it challenging.
Unfortunately the only medication which benefits him has had great impact on his physical health and after bowel surgery (due to perforation after months of having symptoms attributed to Mental health) he is at increased risk of bowel blockages. He currently is under 2 GPs (one for Clozapine prescription monthly), Endocrinologist, Cardiologist, and Surgeon. He has hernias which are now repaired but there can be a reoccurrence and vomiting and pain are an indication of blockage. He has to go immediately to ED in these cases and the surgeon consulted. If his supports were moved he could be left for days unwell as he lives alone.
His medications have to be ceased if he is unwell as two are risks for bowel blockages. He has had 3 hospitalisations to medical wards in the last 2 years for this; and it is highly risky because of previous surgery and because he uses insulin and there are no alternatives to these medications. He has no social contact or friends apart form me (aged 84 and in receipt of level 4 package) and appointments and shopping for food with support. I have no idea what will happen when I cannot coordinate his appointments and ensure consistency of treatments but for now the only way I can continue to do it is with his supports in place for the daily activities.
We are relying on your humanity to ensure that the participants relying on you as our Government can confidently build their life with structures that support them to have reasonable if shortened lives. Their aging parents need to find peace in their last years
National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026
Submission 2585
knowing that the work they have done to ensure this; continues when they can no longer do the bulk of care.
Thankyou for your time