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Submission SUB-C1S5-002970 (Anonymous)

Submission reference
Submission type
General submission
What are your three main problems or concerns with the NDIS?

Who will implement my son's NDIS plan if/when I am no longer able to drive it.

My son has severe and multiple disabilities. He is not able to speak for himself. He lives in supported accommodation (SDA) - He has been there for 14 years. In that time there have been more than a dozen house supervisors and an ever changing parade of staff. Staff focus on personal care and domestic work. No-one takes responsibility for implementing the NDIS plan.

How do these three main problems affect you and/or others?

The lack of SDA staff taking responsibility for implementing NDIS plans means that, in our case and many others, the responsibility falls to the family. I am now nearly 70 and am still absolutely central in developing a vision for my sons future and using the resources available through the NDIS to bring that vision to reality. I find this exhausting - and profoundly concerning. Who will take this role when I can not longer do it?

What do you think are possible solutions to those problems?

I strongly believe that the role of House Supervisor should be boosted to include a clear and stated RESPONSIBILITY - and a supervised ACCOUNTABILITY - for implementing the NDIS plans of the people with disability for whom they are working and caring.

People with severe disability like my son need a paid person in their lives to implement, monitor, troubleshoot and report on their plan. Families, like ours, want to be part of our loved ones life. We want to be part of developing a vision for their life, contributing where we can, and to bring love and belonging to his life. But we parents get tired and old and should not be held responsible for making the plan work.

What parts of the NDIS are working well for you?

I am most appreciative of the focus on the importance of quality of life for people with disability that the NDIS has promoted and validated. The right of people with disability to be part of, to participate in and to contribute to their community is now well recognised, but that was not the case before the NDIS. I am deeply appreciative of that societal change.

I am also deeply appreciative of the opportunity my son has had to move out of the family home, and of the access to therapy that has enabled him to build and maintain optimal independence.