NDIS Not Focused on Inequities

The National Disability Insurance Scheme is not living up to expectations and may even be exacerbating the inequities it was designed to solve, according to a new report.

Choice, Control and the NDIS, which was launched on Wednesday, examined the experiences of people in the Barwon trial site, and explored the degree to which the NDIS was achieving its aims and objectives from the perspective of people with disability using these services.

The research project, funded by the University of Melbourne’s Social Equity Institute, also sought to identify what additional information and supports were required to better facilitate choice and control for people with disabilities.

Associate Professor Helen Dickinson, from University of Melbourne and University of New South Wales Canberra, told Pro Bono News the report highlighted a number of “teething problems” that needed action.

“We try to be quite careful when we talk about this kind of stuff because reform of disability services is really needed,” Dickinson said.

“Outcomes for people with disabilities are really poor in this country, especially compared to other comparable countries. This is a massive reform and it has been implemented at pace as well.

“I’m from the UK originally, there are some similarities in the schemes around individual funding that have been implemented in disability services in England and that was over a 15 – 20 year period, and so this has been implemented over a couple of years and the timeframes keep being brought forward. You would expect with a program like that there would be some teething issues.

“I guess, what we’ve tried to do is flag what some of those issues are… and I think what we’re saying is a number of these issues aren’t insurmountable and it would be really good to see some action around these.”

According to the report, participants’ expectations and experiences of the NDIS appeared to be strongly influenced by their circumstances.

“People living with cognitive disabilities tended to report few changes in their everyday situations, while people living with physical disabilities had a range of views, from positive changes associated with increased independence to deep frustration with ongoing struggles to gain access to crucial resources,” the report said.

Researchers also found that services and resources to help people to exercise choice and control over their care, were not available across the board.

“Many participants relied on supportive carers, family and advocates to navigate the system,” the report said.

“It is important to acknowledge constraints to people with disabilities exercising choice and to recognise the implications of this in a client-driven system, including how it fits with other values that promote the safety, wellbeing, respect and dignity of people living with disability.

“There are also implications around the capacity of service providers to be flexible and innovative in meeting the needs of service users.”

Dickinson said the report included “fairly straightforward” suggestions of things that could happen to make the system a lot easier for people with disabilities to navigate.

“When people want a piece of equipment it needs to be deemed reasonable and necessary and often the planners need to speak with a professional like an occupational therapist or something, to check in whether that makes that criteria,” Dickinson said.

“What that means is then you can get things like, we found, more than one person in the research who wanted a piece of equipment that would cost about $30 or $50 but they then had to have an occupational therapist assessment to check if that was a reasonable and necessary request, which is $100 to $150 to have that assessment.

“So the $30 piece of equipment becomes $200, so it is introducing transaction costs and that is one problem. But also what that does is it says to people with disabilities: ‘We don’t trust you to make a decision over a $30 piece of equipment”. So that definitely doesn’t feel like you have choice and control.

“One easy solution around that would be if you have pieces of equipment that are under a certain amount of money you could say to people: ‘You just purchase that’. Because actually the transaction cost involved in these sorts of things and the energy due to the contract between the consumer and the services outweighs the other costs.”

She said there were also more substantial investments that were needed to guard against some of the inequities.

“One of the challenges at the moment is because there are so many of these lower issues that relate to the kind of administration or relate to the online portal or they relate to care planning process and things like that, they’re taking quite a lot of the attention around the space and we’re not thinking as much as we should be about the potential for the inequities that are caused,” she said,

“So people who are more socially disadvantaged, they don’t have family or friends, or don’t have cognitive ability to navigate these systems really do worse out of them rather than better.

“At the moment not enough work and not enough thought is going into the issues around the equity issues and that means it won’t deliver on the promises for some sorts of groups.”

Dickinson said it was important to hear from the consumer about whether the NDIS could deliver on its promise.

“When you talk to our community researchers they say they don’t believe that they have much of a say at all in terms of how the NDIS is operating,” she said.

“Certainly that was one of the questions that we asked towards the end of the interview: ‘If you could say one thing to the minister who has responsibility in this area, what would you say?’ And what was interesting was in the overwhelming number of cases people said to us: ‘We would say you need to listen to us more, you need to hear what we’re saying around this agenda, we don’t feel like we’re being listened to’.

“So I think there is a sense in the disability community that their voices aren’t being heard as loudly as they might be.”

She said this report hoped to “do justice” to the consumer voice.

“There has been a lot of analysis done around the system and around the perspective of providers… but I don’t think as much work has been done from the perspective of the consumer and the actual individuals who are accessing the services, so we thought it was really important to get that voice into the research,” Dickinson said.

“We also wanted to do that through a participatory research approach so that we could make sure that we did really get the perspective of people and that we didn’t just get told what people thought we might want to hear.

“So we recruited eight people with disabilities to be the researchers and the co-producers of the project in a way, they helped us set the research questions and design how each would collect the data and they did the interviews and helped with the analysis and the write up and I think there is something about having people with disabilities, who have that lived experience, doing that research, that just makes it more authentic for the people who they are interviewing.

“I think when you see someone like yourself and who understands, I think it gives a better sort of data. So I think we really managed to do justice to the consumer voice within it which I think has been a bit missing in some of the more formal analysis.”