In a recent episode of Professor Glyn Davis’ (VC University of Melbourne and ANZSOG Research Committee Chair) podcast The Policy Shop, Bruce Bonyhady (former Chair of the National Disability Insurance Agency) and ANZSOG research grant holder A/Prof Helen Dickinson discussed how the National Disability Insurance Scheme came to be, the scheme’s ongoing rollout, and whether the NDIS will in fact improve the livelihood of people living with disabilities in Australia.
A/Prof Dickinson recently completed an evidence review for ANZSOG on the efficacy of individual funding systems and what is required to ensure their successful implementation.
The NDIS is a nation building reform, Bonyhady explained, because of its three most innovative elements:
Both guests expressed overall positive views about the prospects of the NDIS to improve life for Australians with disability, but Bonyhady explained that the system works best under certain conditions:
"The NDIS is going to work best for people who have disability who have high intellectual function, who are able to make decisions about care themselves and communicate and actualise them easily. Secondly it works well where people have strong family and friendship support networks, because quality of life requires both, and lastly it works best in metropolitan areas where there's diverse supply. The moment you start to weaken any of those three, then you need to build support arrangements to ensure that the scheme delivers on its promise."
Bonyhady clarified that what happens in regional, rural and remote or very remote parts of Australia is that the NDIA has the capacity to bulk purchase supports, so it can enter an arrangement with a provider in order to ensure services in a particular area. But, he warned, “It's a step one needs to take with a great deal of caution, because the moment you appoint someone as the provider of last resort in that area then no other providers are going to enter that market.”
Underserving is not just about geographical markets, noted A/Prof Dickinson – it’s also about the fact that choice works both ways. It's not just about increased flexibility for clients:
"We need to think carefully about the fact that we might be allowing individuals more choice over the services that they choose, but providers also have choice over the individuals that they work with. There have been quite a few instances recently where for people with quite high levels of need, intellectual disabilities and sometimes behavioural challenges, providers are saying "actually for the amount of money that's available for that service we can't provide what's needed". We're seeing examples in the media of where families are having to relinquish the care of their children because they can't find providers who will take them."
Source: NDIS Provider Toolkit
Dickinson and her colleagues at the Social Equity Institute conducted some research into clients’ experiences of the NDIS during the early rollout. They asked people with a wide range of disabilities, and found a commensurately wide range of experiences that they could divide into three rough groups:
"The first group said it was great, they got funding for the first time for things that they'd never had support for before. The waiting lists had disappeared for this group, and the NDIS was really supporting them in their lives. The second group said there were some really good things about it but there were also some challenges in making a reality of it. And the third group the NDIS had been a real challenge for them, and it had had a really negative impact on their lives despite the fact that it had given some of them more funding and more choice."
Something that often came up was weaknesses with the individual service planning process, which could be partly traced to the speed at which the NDIS had to ramp up – from 30,000 registrations (at which point there was public pressure to expand the scheme) to around 110,000 in a very short space of time. The eventual goal is 460,000. New planning processes were brought in to deal with these increased numbers, some of which were by phone rather than face to face, and “that took its toll for some people”.
But some clients also felt their voices weren’t being heard, said A/Prof Dickinson:
"When we asked people 'what's the one thing you would say to the minister with responsibility for the NDIS?' 99% of people said 'please listen to us more'. That's a really compelling thing, and that's a thing that can be too easy to miss when we're making really difficult and complex decisions, to forget about the people who are at the sharp end of the system."
Bonyhady stressed that co-production and co-design of the scheme were crucial elements that should never be lost, no matter how fast the scheme is rolled out.
Bonhady reflected, “with the benefit of hindsight”, that:
"The original work probably didn't pay enough attention to the structural adjustment issues for the sector. …As a result insufficient resources have been devoted to the issue of structural adjustment, and the accountabilities around that have been quite blurred between the NDIA, Commonwealth government, state government and the various departments."
But A/Prof Dickinson urged us not to fall into the trap of thinking that these ‘teething’ problems, which are “almost inevitable”, are an indication that the system as a whole has failed. With reforms of this size, ramping up this quickly, weaknesses are bound to occur – but the media loves a bad news story:
"Whenever we do a piece of research into the NDIS, and we raise positives and negatives, the media immediately seizes on the negatives and want you to sensationalise and say 'well this means that the entire scheme hasn't worked and that we should scrap it and start again', and I don't think anybody thinks that that should be the case. What we've got to be able to do is keep up the pace of reform and recognise the fact that we need to change as we go along, as well as listening to the voices of people with disability."
Listen to the full episode.
By Sophie Yates, ANZSOG Research Fellow.
This article first appeared on the Power to Persuade blog.