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Submission SUB-B8Q7-001357 (Cara)

Submission reference
SUB-B8Q7-001357
Individual's name
Cara
Comment

My brother receives funding from the NDIA. He has high functioning autism, high anxiety and bipolar disorder. In addition to this, he has complex health conditions, diabetes, heart, kidney issues. He lives in a group home and used to receive a level of funding that allowed him to have one on one care for 13 hours of the day. This gave him the support he needs. That funding was drastically reduced in 2022 and he now has one on one care for no more than 4 hours each day. This has significantly reduced his quality of life and care he receives. His behaviours have escalated dramatically. We have requested three separate reviews from the NDIS and even after providing a substantial amount of evidence demonstrating his need for one on one care, the NDIA refused to reinstate his original funding. It is sickening that we have to prove he has conditions that will never improve with time, but continue to deteriorate. It is highly stressful to be involved in this process, year after year and know that the outcome is unlikely to be favourable. I am his legal guardian and I struggle with the complexity of the NDIS. I struggle with the bureaucracy. I struggle with having to prove my brother is mentally disabled and needs much more support than he currently receives. I am frightened he will outlive me and will have no one to advocate for him. I hear about people rorting the system regularly and wonder what they are doing to obtain funds when my brother can't receive legitimate support. People with established conditions, mental and/or physical should not have to prove they require funding year after year. How humiliating to explain you will not recover from autism, bipolar disorder or that your physical health is deteriorating from the cocktail of medication you need to take to manage your conditions. They say a society is judged by how they treat their most vulnerable and I'm afraid we have a lot to answer for. Do not take away funding from those who need it most. Decisions should not be made by one person but a panel of experts and all evidence and testimony from family and carers should be taken into consideration. My brother cannot speak for himself, he does not understand what his family, group home and support coordinator have to do to make sure he gets the care he needs. I ask that our government protect those who need funding, make the process less complicated. If funding is decreased, there should be a very clear explanation why this is the case. People's lives depend on the NDIS. It is cruel to take from those who deserve our support the most.