NDIS - Our Scheme, Our Voice*
Cunningham Pier, Geelong. One of the many Australia wide pre-election Defend our NDIS rallies.
For some time, I’ve wanted to write about my experience as a participant of our National Disability Insurance Scheme (NDIS), a scheme established under the management of the National Disability Agency (NDIA). If I had shared my views in 2019, twelve months after I started on the scheme, I would've been full of praise. The NDIS has liberated my life, and that of my informal (unpaid) carer-husband Gary. We have regained to a large extent, the choices of earning, studying, travelling, and pursuing hobbies. I am immensely grateful that I live in this privileged country in which equity (as it relates to many people with disabilities) has been made a high priority.
But I am now acutely aware of how much the original vision and purpose of the NDIS has deteriorated. I acknowledge my level of privilege and know that as a white educated Australian supported by a loving husband and family my difficulties with regaining quality and control over my life are far worse for thousands of other less advantaged, more marginalised and yet equally deserving people with disability and their carer’s. Thousands of Australians who need the NDIS are, at best, stagnating in an opaque mire of bureaucracy. At worst, their lives have been made far more intolerable as they are victimised, bullied and gaslit by an inhumane, short-sighted system.
I can now add myself to this group of frustrated individuals. Until two weeks ago I had waited for over six months (198 days, to be exact) for the NDIS to sign off a replacement power wheelchair. I have another 2-3 months to wait for the chair to be built and delivered. That will take the wait to 289 days.
289 days is a flipping long time when you have a neuromuscular degenerative condition. I've put humans on this earth in less time... and with less pain and frustration.
Equity, not charity
My circumstances necessitate a new chair so that I can move around more comfortably with less pain and detriment to my health, especially pressure areas. Surely, this type of freedom is a basic human right. A replacement power chair will future proof anticipated physical changes with an ever-growing cache of available options such as chest harness, cushions, blue-tooth connectivity or new back-rest. Additionally, as my arms become less willing to do anything I have had a Dowing2-Focal Arm approved to use with my chair, but this can only be adapted once we have my new chair.
The first approval objection for my requested replacement powerchair was that I would need to provide a second quote - an unprecedented demand for my occupational therapist in his seven years of working with NDIS clients. While many other pieces of assistive technology such as hoists and rollators require 2-3 quotes (due to the universality of design and varying costs), anyone in the industry knows that scripting a specialised piece of equipment as a wheelchair requires many paid hours of an OT and/or physiotherapist. Our supporting report highlighted other chairs that were considered and why the quoted chair was the best for my condition – current and future – which should be sufficient. We resisted this illogical call with clear and reasonable points and were told to wait.
Yet at least I can move around while I wait. Many others are in even worse situations while being forced to defend their own reality just to request any new piece of equipment or simply apply to join the NDIS. They are suffering greatly, and those requesting help for a less obvious physical or mental disability, despite myriad health reports and supporting letters, are gaslit and disbelieved while attempting to access an insurance scheme designed to mitigate societal inequity. We need higher numbers of staff within the NDIA made up of medically trained and disabled people.
The original NDIS model, born in 2013, was a person-centred ethos based on the social model of disability – that disability becomes disabling when constrained by societal barriers. This aligned with Australia’s obligations under the United Nations Human Rights Convention. While many people are excluded, such as those who are over 65 when their disability is acquired (urgent fixing required here), the NDIS was designed to afford every participant agency and equality over their lives through the provision of human and technological supports.
It is failing at this task
Like anyone else that has any stake in the NDIS, the more I think I understand about how this multi-tendrilled bureaucratic triffid operates (where each tendril represents the ever disappearing and reappearing contacts working within the monster-plant called the NDIA), the less clarity I have. After 3 1/2 years as a participant, 9 plans (due to either annual renewals, change of circumstances or, more recently, in-part approvals), 1 reviewable request, 3 complaint letters and 1 application to the Commonwealth Ombudsman you’d think I’d be fairly NDIS knowledgeable.
But the only thing I’m clear on is that the Participant Service Charter, which outlines five clear pillars of responsibility of the NDIA, has very little bearing on the experiences of thousands of participants. These expectations of transparency, responsiveness, respectfulness, empowerment, and connection often overlap and should be evident in every dealing between the client and the NDIA.
They’re not. I have discovered that opaqueness and ambiguity surround each step of dealing with the NDIA. As participants we shouldn't expect much different when the previous minister for the NDIS, Linda Reynolds, refused to provide full supporting data on their forecasted NDIS spend. This was after replacing Stuart Robert who tried to introduce a dehumanising three-hour independent assessment, cloaking it as a fairer way to allow every potential and current participant access to medical assessors. Hopefully our new government will take a fairer and more human view of the need for change.
In its defence, the NDIA seems be working on improving access and understanding of its information and decisions through such forums as participant engagement programs and reference groups, which has resulted in an upgraded user portal and app among other things. However, the real issues stem from inexplicable and arbitrary decisions made by faceless NDIA decision-makers with either inhumane reasoning or none at all.
2,503 NDIS appeals were received by the Administrative Appeals Tribunal between July and November 2021 – a 324.3% increase compared to same period in 2020. Kim Barnes was one of them. Kim has advanced Parkinsons Disease , the symptoms of which now necessitate 24/7 care in her home. Her request for around the clock care was initially rejected by the NDIS, leaving her without the support she needs to stand, eat, dress, walk and be assisted to rise after falls for large periods of each day. She won her appeal, but not without considerable personal stress and anguish. Kim, like so many, was simultaneously coping with her degenerative symptoms and fighting for her autonomy and safety against an agency charged with the responsibility to preserve and enhance those very rights.
Medical Administrative Burden
As a disabled participant in the NDIS, I am acutely aware of the combined administrative weight of everyday medical appointments, medications, tests, and symptomatic impacts along with organising, managing, and paying supports and services. This medical administrative burden is no small matter. As a participant within the NDIS we are assigned either a Local Area Coordinator (LAC) or NDIA delegate. In other words, a client manager. In Melbourne I was given an LAC through a government contracted community services organisation who worked through my initial participant plan with me once I had organised the supporting documentation. In 2018 it was already very difficult to source information on what was required, so I did that on my own, as my impression was that this wasn't my LAC’s remit. As it turns out, sourcing supports and services to include in my plan is EXACTLY what their role is, but due to staff capping and reductions, they simply can’t keep up, and are being forced into a planner approval role only. The last I heard from my LAC was her calling to explain my first approved plan – and then, nothing.
When we moved to Geelong I was given an NDIA delegate instead of an LAC. Upon questioning, my understanding was that the delegate has a certain level of authority with which they can more quickly approve a plan. This has sometimes been true; however, far from being able to establish a connection with one delegate who can understand and respond to my ever-changing requirements for mobility aids and other equipment, I have had several delegates throughout the past few years. This has meant I have had to supply numerous people with copious reports of my condition and needs from medical and allied health professionals. The inability to follow up after initial contacts or a health-impacting approval delay and the exhaustion of continuously needing to start are frustrations – often impacting women more than men – that can be overwhelming and traumatic.
Defend our NDIS Rally, Geelong, April 2022
Democratic, not economic
There is no reason the NDIS cannot be redeemed and improved. Its focus on cost-cutting must be replaced by its original intent: to improve the lives of those who are suffering from living with a disability in an ableist and inequitable society. The noxious economic narrative surrounding it must be dispelled; as Chief Economist at The Australia Institute Richard Denniss articulates, too often government decisions are presented as economic when they should be represented as democratic. That although Australia can clearly afford a national disability scheme that benefits most Australians (participants, families, health service providers, hospitality operators and support workers) the previous government chose to deprioritise social equity in favour of such activities as (dare I say) bungled submarine spending and a taxation system that increasingly benefits only the wealthy. NDIS spending is thus framed as economically unsustainable despite providing a return on investment of $2.25 for every $1 spent. Now, our brilliant socially equitable system has become a political pawn in a cruel game of chess – one in which the only losers are the already marginalised individuals simply trying to live. The personal has become profoundly political.
As a disabled woman who has LGMD, a neuromuscular degenerative disease, I have slowly and begrudgingly relinquished my former days of being unburdened by medical or disability related content. I have gratefully taken up the liberating benefits of Australia’s ground-breaking NDIS. It is unavoidable to discuss a government run scheme without some political reference where the personal is political. In a fiscally driven world Australia can prove that there is room for an economically sustainable concentration on social equity beneficial to all. We just need a genuine morally and equitably focussed government – and it looks like we just got one.
* Slogan used in the latest Defend Our NDIS pre-election campaign in Geelong.
