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Submission SUB-C3G3-001525 (Karen)

Submission reference
SUB-C3G3-001525
Individual's name
Karen
Comment

Good afternoon,
I am the parent of a young adult with complex needs resulting from diagnoses of autism and social anxiety disorder, and differential diagnoses of mania and delusional disorder. Over the past 2 years we (his parents) have experienced a significant eroding of our son's primary natural supports, his parents, through the NDIS's approach of choice and control. Even when our son was making choices that negatively affected his safety (e.g. putting him at risk of homelessness), he was supported by his NDIS service providers to do so. This was done to support his choice and control, despite his diagnoses and medical documentation provided by his psychologist indicating the serious difficulties he experienced in understanding the consequences of this choice and control. Because we, his parents, were advising him to do things he didn't want to (like paying his rent), he was able to tell his support services that he didn't like what we were doing, and they helped him remove us as his nominees from NDIS and Centrelink. He then didn't pay his rent for four months and was forced out of his home (this is just one example of the many things that went wrong during this time). The only reason he didn't end up living on the street (a serious safety concern) was because we moved him back into our family home.
The importance of personalised supports and encouraging natural supports cannot be overstated. While I value choice and control for our son and other NDIS participants, this cannot override their safety and wellbeing. A far greater understanding of the variety of disabilities and the impacts these can have is needed by those supporting key decisions in the lives of NDIS participants. Additionally, the NDIS should not be able to take away natural supports and risk the participant's safety without first investigating the role of these supports and using outside advice to make these crucial decisions.

Kind regards
Karen