Gruelling and adversarial: the NDIS in users’ words

While it has been 'an absolute f*cking boon', as one patient says, compared to not having one, trust in the scheme has soured.

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It is nearing ten years since the National Disability Insurance Scheme (NDIS) was legislated in the dying days of the Gillard government.

Not only was there bipartisan support for the NDIS, the reform came about on the back of a grassroots campaign from the disability community. People with disability – with family, friends, and service providers – backed the principles behind the scheme and took to the streets in support.

There are now more than half a million Australians with disability who are NDIS “participants” (meaning they receive individual funding for disability services and equipment).

However, the optimism of the early days of the scheme has waned. Research by the Summer Foundation and La Trobe University suggests that despite gratitude for the NDIS, participants have lost trust and confidence in the National Disability Insurance Agency (NDIA), which administers the scheme.

‘Down a suck hole of desperation’

Roy*, who has multiple sclerosis, was one of the 12 NDIS participants interviewed for our research. He moved to a regional area in 2016 in the hope of becoming an NDIS participant when the scheme began rolling out nationally.

We were going down a suck hole of desperation up until that point. So, on the most foundational level, the NDIS has been an absolute fucking boon for us.

Despite still believing in the scheme’s ideals, Roy’s relationship with the NDIA has soured. For example, he shared his frustration with a process of requesting funding for a replacement power wheelchair that he described as gruelling and adversarial.

This wheelchair I’m in is six years old. As great a chair as it is, parts have been falling off of it for the past year […] And people with no clinical expertise at the NDIS completely rejected a clinically and factually sound submission for it to fund a replacement chair. A like-for-like replacement. And the subsequent eight months was a constant and all-consuming battle, which took up our days and nights and weekends […] We did [recently] succeed, [but] at no small cost. The emotional toll and mental toll was insane.

Losing trust and confidence

People we interviewed in the months before the last election (between November and January 2022) shared experiences that eroded their trust in the NDIS to make consistent and fair decisions about funding for support, housing and equipment. All interviewees agreed to participate in the study anonymously. They represent varied disabilities, ages and backgrounds.

Participants described long wait times for approval of funding, with a lack of feedback from the NDIS. Many shared their experiences about approval delays and their fears for the continuation of their services.

Hannah* described feeling anxious each time the NDIA reviews her daughter’s funding to live in Specialist Disability Accommodation.

I think it’s crap that we’ve got this year-to-year worry, and for these older parents, it worries me enough. Imagine how, if you’re in your 80s, and you had a 50-year-old or a 60-year-old [child] […] they’ve still got no peace of mind […] I just don’t understand how they can be so cruel to people.

Sue* said she felt left in the dark when her circumstances changed and she needed a new funding plan.

We need to [be] aware of where the plan is, how long is it going to be, to be approved. What’s the hold-up? […] If you put in for a whole new plan, I think we should get regular emails where the plan is at.

Legislation requires the NDIA only to approve funding for services or equipment if it is “value for money”. Participants expressed frustration when they perceived the NDIA denied requests on cost grounds yet appeared to waste money in other ways.

Andy* shared his experience of cost inefficiency.

I had to wait more. I think a bit over two years to actually have my own wheelchair. We were hiring a wheelchair at $160 a week for a period of two years [at NDIS expense].

Having an ally

Having lost trust in the NDIA, participants identified the need for an ally outside the scheme.

Allies were described as someone who understands you and your disability and who is ready and skilled to give advice, assistance or support. Examples of allies include support coordinators, family or friends, and allied health workers.

Brent* described what he values in having a support coordinator as an ally.

You need to get a good support coordinator. But it is very important that you get along with your support coordinator and they understand your needs and what you need for your plan […] It’s all about supporting you as a person.

In response to the frustrations expressed in this story, Minister for the NDIS and Government Services Bill Shorten said:

I am committed to working with people with disability and the sector to restore trust, empathy, and ensure there are better outcomes for NDIS participants. We will empower people with a disability to have a bigger say in how the Scheme is run, by putting participants at the centre and ensuring they are included in genuine co-design.

“We are the same in many ways. For example, we all love someone, we all have dreams, we all need to be treated fairly. We all have things we like to do, places to go. I go to school and do my homework like everyone else.’ – Bas, aged 12 #DisabilityRC pic.twitter.com/1Ws0G0bdJ3

— Disability Royal Commission (@DRC_AU) June 8, 2022

Rebuilding trust

Despite misgivings about NDIA processes, people with disability want trust to be restored. Participants in the study remained positive about the concept of the scheme and expressed gratitude for the possibilities it opens when it operates as intended.

Andy* said it had made “an incredible difference” to his life. “I never anticipated such a thing would exist.”

“The NDIS has improved my life amazingly,” said Harmony*. “Like just the fact that I get to go out and I get what I need and things like that. And part of me just wanted to take a full page ad out in one of the papers just saying, ‘Thank you, Australia’.”

NDIS participants’ relationship with the NDIS is one they can’t opt out of. They want and need the relationship to work. For a healthy alliance to be developed, there is a need for stability, timely communication and an understanding of each other’s needs. Time will tell whether a new government can deliver on promises to rebuild trust in the scheme.

In response to concerns raised by participants, an NDIA spokesperson said:

The National Disability Insurance Scheme provides individualised funding packages, allowing participants choice and control over the use of disability-related supports deemed reasonable and necessary to achieve good outcomes.

In March this year, the NDIA introduced the refreshed Participant Service Improvement Plan to renew the NDIA’s focus to deliver a Scheme that meets participants’ expectations. The Agency’s work is also supported by the Participant Service Charter and the newly legislated Participant Service Guarantee.

As part of our commitment to our Service Improvement Plan and our obligations under the Participant Service Guarantee, the NDIA has updated its guidelines to ensure participants, families and the wider sector have a better understanding of the supports they can expect the NDIS to cover.

*Names have been changed for anonymity.

Kate D’Cruz, Senior research fellow, La Trobe University and Mark Brown, Research Fellow, La Trobe University

This article is republished from The Conversation under a Creative Commons licence. Read the original article.