“Pain, fear, and frustration”: NDIS participants describe their experiences in a damning new parliamentary report

As a parliamentary committee calls for cultural change within the National Disability Insurance Agency (NDIA), Hireup speaks to CEO Rebecca Falkingham about initiatives already underway to rebuild trust.

Photo credit: AAP

A parliamentary committee has released a scathing interim report on the culture of the National Disability Insurance Agency (NDIA), calling on it to do better. 

Its release on Thursday details months of consultation with participants and their families who, according to the report, expressed “pain, fear, anxiety, frustration and exhaustion” over their dealings with the Agency.

The inquiry was looking into whether the NDIA was delivering on its brief to ensure “each person with disability has their own individual support needs and should be able to exercise choice and control in relation to these”. Specifically, it looked at whether the Agency had the “capability and culture” to do this. 

The committee’s members said the testimonies were “not easy to hear” and called on the government and the NDIA to “learn from these experiences and take action to improve the NDIS for all participants, their families and carers”. 

The inquiry was launched in October, the same month Rebecca Falkingham replaced embattled NDIA CEO, Martin Hoffman. Rebuilding trust with participants was among her first priorities.  

Speaking to Hireup earlier in March, and prior to the release of the inquiry’s findings, Falkingham said instituting a culture of transparency would go a long way to restoring relationships with the disability community. 

“Having a culture of trust, transparency, compassion, and consistency is really important to me, because it's what I’ve heard really clearly from not just participants but also families, carers and providers,” Falkingham said. “Transparency, for the long-term viability of the scheme, is so critical that we want everyone to know everything that's going on inside the agency”. 

Falkingham says that many participants feel the planning process is “a black box” and the agency has to do more to help people understand why certain decisions have been made about their plans.

“I always say if we're not willing to look someone in the eye and explain why we've made a decision, then we shouldn't have made that decision. Because that, for me, is at the heart of transparency - being able to explain every decision this agency makes, why we've made it, and be willing to be called out when we get it wrong. That builds trust and that's the most important byproduct of transparency.” 

National Disability Insurance Agency chair Kurt Fearnley, NDIS Minister Bill Shorten, NDIA CEO Rebecca Falkingham and Dr Graeme Innes at a press conference at Parliament House. Photo credit: AAP

Opaque decision-making was one of the key criticisms of the Agency prior to Falkingham’s arrival. It’s also a reason the NDIA has been tied up in costly battles at the Administrative Appeals Tribunal (AAT), as an increasing number of participants challenge decisions about their plans. 

In the hope of making the review process less combative and more effective - and reducing the backlog of “legacy cases” and legal costs - the Agency has been trialling an alternative route to resolving disputes. 

This Independent Expert Review programme (IER) gives participants the option of having their complaint reviewed by an independent expert - with “disability expertise” - who meets with all parties before making a non-binding recommendation to both the participant and the Agency.

Latest figures show more than 4,400 cases have been resolved using this pathway in the last 12 months. It’s had a significant impact on the number of legacy cases, helping to slash the 4,500-strong caseload by 70 percent.

“What's been quite extraordinary to me” said Falkingham, “is that we have not said no to a single Independent Expert Review recommendation so far, and they've been some of the most complex and challenging cases that we've had”. 

Falkingham says the IER pilot is now in its final phase, with the Oversight Committee putting together recommendations for the government as to its long-term use. That committee is being led by former Australian Disability Discrimination Commissioner Graeme Innes, who is also Deputy Chair of the Attitude Foundation. Falkingham says, along with cutting caseloads, the IER process is reframing mindsets within the Agency.

“The other thing that’s changed quite significantly is the culture inside our review and legal branches. I've got a view that nine out of 10 matters could be resolved way before they get anywhere near any kind of review process. 

“We've got a number of people doing some work at the moment around the complaints processes. There are [currently] six different areas that you would come into at the Agency if you want to make a complaint, none of which talk to each other.”

Falkingham says improving communications both within the agency and with participants is key  to reducing complaints.

“If you're able to explain why the agency has made a decision, whether it fits with the legislation or the parameters, people generally don't want to then take their complaint to a court or the AAT,” she said. 

“Just starting [the process] open-minded and with a sense of compassion to try to resolve that issue or that complaint for an individual makes such a big difference to the pipeline going to the courts.”

The IER has been highlighted in the interim report as one of “several initiatives” already underway designed to address the capability and culture of the NDIA. It also noted the scheme is in an “active transition phase”, with a relatively new CEO, Chair [Kurt Fearnley] and minister, Bill Shorten.  It welcomed these changes, and called on the government and the NDIA to “undertake reform with focus and urgency”.

This is part one of a three part series based on Hireup’s interview with NDIA CEO, Rebecca Falkingham. In the next instalment, she tells us what crucial element is missing from media coverage of the NDIS, and why tier two supports are critical to the scheme’s affordability.