People With Disability Demand Action to Fund and Fix NDIS

Thousands of people with disability, their families and sector workers are demanding action to fix the National Disability Insurance Scheme, as a new report reveals the scheme could be failing up to a third of participants.

Grassroots advocacy group Every Australian Counts has released data from a survey of more than 2,200 NDIS participants, their families and sector workers, about what they think needs to change about the NDIS.

The data, which was released on Monday to coincide with a COAG Disability Reform Council meeting, revealed five priority areas where immediate action was needed; improved planning, closing gaps in plans and services, fixing delays, making sure the NDIS works with other systems and realising the scheme that people with disability were promised.

Every Australian Counts campaign coordinator, Kirsten Deane, told Pro Bono News the aim of the survey was get a sense of not just of what the problems were but what people’s priorities were in fixing them.

“We had been hearing a lot on the ground about the problems with the NDIS and we’d been hearing a lot from our supporters about the kind of difficulties they were encountering,” Deane said.

“What we wanted to do was get a sense from people with disability and their families, what was most important for both the NDIA and the government to get onto, to make sure that they were the things that were most important to people with a disability and their families.”

She said people with disability, their families and carers, were the ones who knew first hand how the scheme was and was not working on the ground.

“[Something] we heard really strongly through the survey was that the scheme is working well for some people and we should never lose sight of that. We are seeing the outcomes that we’ve always really wanted to see; people being able to move out of home, people moving into employment, families being able to return to employment. But it’s not working well for everyone,” Deane said.

“There are particular groups of people who are experiencing difficulties – people with a psychosocial disability, people from CALD backgrounds, people from Aboriginal or Torres Strait Islander backgrounds, people who have complex needs.

“And what we’ve got to do is get the scheme working really well for those groups. We’ve got to take what we learn from when it’s working well and make sure it works well for everyone.”

According to the survey, respondents wanted to be able to see their plans as they were developed, so they could correct mistakes, and catch problems early.

Another priority was for plans to be automatically renewed until a planning review could take place, with some participants saying they were currently waiting up to three months in between plans.

Many people also despaired at how long the NDIS took, particularly regarding aids and equipment.

One respondent said: “I applied for NDIS for my son when he was eight months old. Early intervention is critical for him and yet here we are at 18 months old and still waiting on a plan.

“It is taking too long for some people, including our son, to get the equipment and modifications he needs. The process needs to be simplified and work much more efficiently.”

Making sure the NDIS worked with other systems was also flagged as a problem with more than 60 per cent of respondents saying the NDIS and all levels of government should sit down and work out who pays for what.

“We can’t be caught between pointed fingers and be left without any support,” said one respondent.

“Families don’t deserve to be stuck in the middle of government bureaucratic arguments, they don’t need the extra stress and drama.”

It emerged many people were worried and frustrated that the dream of the NDIS had become lost “because of a bureaucratic focus on process instead of good outcomes for people with disability”.

Deane said they planned to use these priorities to talk to the NDIA and government about what they wanted to see resolved and to “keep the public and political pressure on”.

“Today, people with disability, their families and carers are calling on the federal government to fund and fix the NDIS. Our community is depending on it and they deserve nothing less,” she said.

It comes a week after Federal Treasurer Scott Morrison announced that plans to raise the medicare levy to fund the NDIS had been scrapped, sparking anxiety throughout the disability community due to concerns over the long-term funding of the scheme.

Following the decision Every Australian Counts commissioned a poll from Essential Research to find out what ordinary Australians thought about the NDIS and how it should be funded.

According to the poll, 89 per cent of respondents agreed that people with disability deserved the same opportunities as other Australians and 80 per cent agreed the government should fully fund the NDIS.

“We know the Australian public stands with us,” Deane said.

“Today we have also released the results of our nationwide poll showing that 80 per cent of Australians think that the federal government should fully fund the NDIS and provide certainty for people with disability and their families.

“70 per cent of Australians agree that providing full funding for the NDIS should be a top priority for government.”

Deane said the NDIS needed to be fully funded “now and into the future” so the focus could be on fixing the problems that people were experiencing.

“People with disability and their family need certainty. They need to know the NDIS will be there for them when they need it, and they need to know the scheme is working and can meet their needs,” she said.

It comes as an evaluation of the NDIS by Flinders University researchers revealed the scheme is failing a third of participants.

According to the research, which is the longest and most rigorous study of the NDIS, while the scheme works well for the majority of participants about one-third of people felt no better off, and 10 to 20 per cent felt “worse off”.

“The evaluation shows credibly that in most of its aspects the NDIS is working well for the majority of the people that it touches, which is a major achievement,” the report said.

“However, the NDIS also leaves a large minority (about a third) as well off as they were before, and it makes a small minority (between 10 and 20 per cent) feel worse off.”

In particular people with intellectual and psychosocial disabilities as well as older carers with health issues, were found to be at a disadvantage.

“People with disability who are unable to advocate for themselves or who struggle to navigate NDIS processes are at risk of receiving lower levels of services than previously and many have,” the report said.

“The NDIS has also had a negative impact on the availability and cost of services for people with disability who are not part of the NDIS.”

Researchers said the findings pointed towards the need for closer monitoring and for more targeted and person-centred policy responses.

They also highlighted that the speed of the implementation had been “too fast” and that “more thought” needed to go into the practical aspects of the NDIS rollout.

“Some of the practical issues appeared to be getting solved during the four-year evaluation period, some remained largely unchanged and some ­appeared to be getting worse,” the study said.

Deane said she found it striking that the results from the Every Australian Counts survey were very similar to the results of the formal evaluation of the NDIS.

“The things that people told us were very similar to the findings which is that people really want to see the planning improved, they really want an end to all the delays, they really want some work on plugging the gaps that are emerging with the NDIS and they really want some work to make sure that the NDIS works well with other systems,” she said.

But she said it was also striking that none of the problems were “insurmountable”.

“All of them can be fixed. What we’re calling on the government and the NDIA to do is roll up their sleeves and get the job done,” Deane said.

“We don’t want the vision of the scheme to be compromised by poor implementation and what the results of the survey show is that there’s nothing there that can’t be solved.

“We absolutely think that the NDIS is the way to go but we’ve got to get it working better. We’ve got to get it implemented the way it was intended to be implemented. And we’ve got to get it back on track.”