When you start a session about one of the biggest social reforms since Medicare with a statement like that you can’t help but feel a bit nervous. I chose to sit in the session Perspectives on NDIS because at the Mental Health Coalition of SA we have spent the past two years looking at all sorts of perspectives on this. So it was nice to see fellow South Australians Patricia Sutton and Sarah Sutton share the experience of family members Ben and Peter who both live with a form of schizophrenia. Peter gets NDIS support because of his comorbidity of diabetes, a brain injury and issues with his eating which impacts on his diabetes. However Ben whose schizophrenia is more severe than Peters does not get NDIS support as yet. Here for me was the story I wanted to hear, how does a family live with this dilemma? How does a family manage care for two men living with a mental illness when one has an NDIS plan while the other doesn’t?
“Living with a disability is nothing like living with exclusion.”
This is how Patricia and Sarah began their talk and for me it really summed up what was happening in their lives. But that was not the focus for today. This was about Peter’s story, which was the good news story we desperately need to hear about the NDIS and mental health. For the other side of the story Elena Sutcliffe from Being – New South Wales peak body for people with a lived experience – followed the Suttons. Elena gave me what I have been looking for, feedback from the coalface. Through their survey they found that people living with a mental illness who were applying for NDIS found it a long process that requires energy and plenty of time. “The NDIS in principle is good, however in implementation it’s a mess” – Survey respondent But what stood out most for me here was the language being used in the assessment process. There is no better example than asking someone living with a mental illness whether they had trouble getting in and out of the bath. Then there is the lottery of it all as people reported if you had a good experience of the system that was down to luck rather than a standard for delivery. So does this mean Debbie Hamilton is lucky?
No. Debbie from Newcastle got up next and if ever there was a story of how the NDIS can change lives this was it. Debbie showed us her NDIS package and it included – amongst other things – cleaning and ironing. Ironing was key because it meant she could get up and do public speaking without wrinkles. Why is that so important? Because Debbie has not been able to do that since the 1990s. “Funding for NDIS is less than half of what we currently getting.” So while we are building the aeroplane while it flies and Peter and Debbie are comfortably strapped in, it was NEAMI who showed us we still don’t know what that plane looks like yet. NEAMI talked about their new business model of Me Well, its NDIS service delivery arm. Me Well is up and running but how they got there was not easy. It meant taking on a trial site and changing culture and mindsets. Now we are talking about lean management, billable hours and mobile workforces that means changing the way they do business and for NGOs who struggle with flexibility that is real change. But are they there yet? No, because they are still seeing if this model is working and looking at how they measure that. This session had the capacity to give give hope to those concerned about the NDIS but when consumers in the Q&A refer to it as traumatising then we still have a long way to go.
