National Disability Insurance Scheme Amendment (Getting the NDI Back on Track No. 1) Bill 2024

Submission 136

Hi,

I am writing to express my deep concern about the proposed bill to “Get NDIS back on Track”.

My 59 yo brother suffers from MS - he was diagnosed at the young age of 33. Some 15 years ago, as he could not care for himself anymore, he moved in with my parents and they looked after him to the best of their ability. Dad passed away in 2020 and since then, mum has been the main carer for my brother. Needless to say, that this ageing and frail woman has witnessed the health of her son decline and that has had an impact on her own health. My brother now depends on people for most of his daily routine. Mum, being a devout catholic believes that it is her duty to care for her son. So much that she has sacrificed her own health (she is on warfarin and has been for a very long time, has an artificial valve and has other ailments) to such an extent that nowadays she can hardly see and care for herself. Yet, she continues to care for her son.

My brother can’t do anything for himself, getting dressed is a challenge, spends much of his time in a sofa/sitting down. He feeds himself with huge difficulty- hence his need for assistance.

He is a NDIS participant - and has been for quite some time. I have to say that dealing with the NDIS and its bureaucracy is in itself another nightmare- at best of time.

In recent years, i have been a bit more involved in assisting both of them- and as I live and work in another state, this is not easy.

And now reading some of the proposed changes, I wonder if there has been some genuinely humane thought put into that. I understand that the NDI S is not sustainable on the long run. But has anyone thought of the enormous stress that will be brought on these poor people. Haven’t they not suffered enough- we need to pile some more onto them? Now new tool (which we’ll only find out after), new methodology, and many other hoops that people have to go through to be considered by society. And we brag about equity, inclusiveness, fairness etc. How about addressing the rort that goes on by the providers, regulating that part of the industry rather than attack the more vulnerable again. That is quite disgusting if instead of addressing the real culprits, we once again look for the weak and vulnerable.

I am hoping that a few decision makers in that Parliament have the courage and decey of standing up to this. Again, don’t get me wrong - NDIS needs reform- but that bill is tackling the reform from the wrong end - the easy and vulnerable people who cry for help on a daily basis.

Hopefully my plea will not fall on a deaf ear.

J M S