While the federal government continues to focus on service provider fraud and inadequate state services as causes of increased spending for the NDIS (National Disability Insurance Scheme), little attention is being paid to the problems within the system itself.

I’m not just talking about inappropriate plans and inadequate budgets, but about the individual interactions with the NDIA (National Disability Insurance Agency) and the organisations they contract, which lead directly to those problems. All those interactions quickly add up, not only wasting money but leaving too many disabled people exhausted and without support.

Even in a straightforward situation such as mine, dealing with the NDIA has forced me into going to the AAT (Administrative Appeals Tribunal) after only three months.

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I delayed getting my first NDIS plan until three months ago because I was working on my PhD.

In the NDIS system, everything revolves around the plan. It outlines the participant’s life, and then lists each of their goals along with the budget allocated to it, and instructions for how that money must be spent. Many people I know have gone through a harrowing planning process, and I decided I could not manage that on top of my research. However, once my PhD thesis was finalised I rang the NDIA 1800 number to request a ‘planning meeting’, and within a couple of weeks I met with my LAC (Local Area Coordinator).

LACs are one of the NDIA services contracted out to other organisations such as UnitingCare and Mission Australia. Their role is supposed to be as a stable link between the participant and the NDIA.

The meeting took an hour and a half. Firstly—despite having already been assessed as eligible for the NDIS—I had to provide 100 points of identification. Then I described my circumstances.

I was born permanently totally blind. I am forty-five. I have just graduated with a PhD in Australian literature. I am a self-employed writer and researcher. I want to develop my career, and to have a bit more of a life now that my PhD is finished. Or, in the language of the NDIS, I want to ‘maintain my independence’ and ‘improve my capacity to be more involved in community.’

One of my goals is to walk around the small shopping centre in my local area independently. I used to know it well, but between my PhD thesis taking up so much of my time, and the disruptions of Covid, a few years have gone by since I’ve been anywhere there other than the post office and the pharmacy. In that time, some shops have closed down and others have opened, and the layout of the shopping centre itself has changed.

As a totally blind person I become familiar with an environment through the assistance of a trained Orientation and Mobility Instructor. This person describes the area to me, and together we determine the easiest and safest routes for me to walk from one place to another, and then I practise those routes with the instructor’s supervision until I know them. This might take a two-hour session a week for two or three months. And then I will not need any orientation and mobility assistance again until I need to learn another environment as the result of something such as starting a new job or moving house. I have had orientation and mobility episodically since I was five years old.

Another one of my goals is to complete ‘daily living activities’, such as filling in forms and reading mail. Using software called a screen reader I can use a computer for some forms, but other forms are not online, and some forms that are online are not designed properly—which means I cannot access them. Similarly, while I can and do use a scanner to read printed material, scanners often have trouble with numbers and handwriting, and they cannot tell me where to sign a document. In all of these situations the best solution is a sighted assistant for an hour every month or so.

At the end of the planning meeting, I was not confident that my LAC understood what I had said. I knew they were aware that I had completed a PhD because they repeatedly told me how ‘amazing!’ this was, as if they had never heard of a disabled person even attending university. I worried about them being stuck on this detail when it was peripheral to my goals. Still, I thought, my situation is straightforward, and the LAC took notes, and they would not make any decisions with regard to my plan anyway: NDIS plans are sometimes drafted by a LAC, but always formalised within the NDIA. They are finalised by a planner and approved by a supervisor, and neither of those people meet the participant whose life they are planning for the next two years. We do not even know their names.

A week after the meeting, I was sent my plan.

It was full of inaccuracies about my life and goals. The biggest problem, however, was that—although my budget included funding for someone to read print such as forms and mail for me—it did not include funding for me to learn how to walk around the shopping centre by myself. Instead, I was given funding for occupational therapist support ‘to improve cognitive function, and fine and gross motor skills to help develop age-appropriate independence.’

Occupational therapists are not orientation and mobility instructors, and mobility is related to my blindness, not my cognitive functioning or motor skills. Besides, what is age-appropriate independence for someone who is forty-five?

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When I met with my LAC for the Planning Implementation Meeting the following week, they did not know the answers to these questions. They agreed that my plan did not match what we had discussed, but they said that they could not do anything about this. They suggested that I call the NDIA 1800 number and request a change to my plan.

I rang the NDIA later that morning. ‘My plan sounds like it was written for a child, with completely different impairments to mine,’ I said, ‘as if it was just cut and pasted from someone else’s plan.’ ‘These are very cookie-cutter statements and not individualised at all!’ agreed the Customer Service Officer. And then, later: ‘My Supervisor said to talk to your LAC.’ ‘But I’ve just spoken to them and they say they can’t change it?’

‘I’ll have to refer it to the Region then,’ the Customer Service Officer said.

I still have no idea what that meant, I only know that the referral required me to stay on the phone for half an hour, and then I was told that the Region would respond within twenty-one days.

When that didn’t happen, I called again. This time the Customer Service Officer said they would ‘refer it to the Delegate,’ who also had twenty-one days to respond. When I asked what I should do if the Delegate did not respond in twenty-one days, they answered: ‘call and we’ll see what we can do’ in a tone that suggested my question was ridiculous.

Just before the twenty-one days was up someone called me, but it was not the Delegate.

‘I’m your new MNC,’ they said, as if that would make everything clear. It turns out that an MNC stands for My NDIS Contact, which might or might not be the same as a LAC but, like the LAC, they do not work for the NDIA. I decided I would leave understanding the differences for another day, and asked if they were calling about my request for a change to my plan. They did not know anything about my request and asked me to explain my situation. ‘I rang the 1800 number’ I began. ‘Steer clear of them if you can,’ they interrupted. ‘Well, who should I call then?’ ‘Me, you can call me anytime’ they reassured me on the phone, and then in an email.

The day before the second deadline, an IRO (Internal Review Officer) contacted me. I was not aware of having requested an Internal Review, but perhaps someone had not told me what it was called. I was given eleven days to ‘provide any new information or clarify how we will progress your request,’ and then a decision would be made. Two days later I provided the IRO with a statement outlining the problem. Two days after that, my review request was denied because the IRO was ‘not satisfied the request is value for money.’ They assured me that ‘There is no further action required from you’ but, if I did want to apply for an external review by the AAT, I had twenty-eight days to do so.

Reading through the letter that explained the IRO’s decision I discovered that my request to use my budget for orientation and mobility rather than occupational therapy had been changed to a request for ‘increased Capacity building funding.’ The letter further explained that the NDIA wanted me to provide a report from an OT that would ‘demonstrate how the increase in supports is anticipated to improve your functional capacity over time.’

In other words, they will not pay for me to learn how to walk around my local shops independently. Instead, they want a report from a professional with no knowledge of orientation and mobility, and they want that report to explain how I will benefit over time from the increased funding that I did not request! But at the same time they are happy to provide substantially more funding for someone to read print for me, and they did not want a report from a professional stating that I need that assistance.

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That email arrived late on a Friday. The following Monday I emailed my MNC asking for their help. Another MNC replied, but when I asked if they were now my MNC and could help me, they just said that the first MNC would be in touch when they returned. A month later I had still not heard from the first MNC.

With no other option, and time running out, I submitted a review request to the appeals tribunal. I just want to go to the local shops by myself.

And I am one of the lucky ones. One of my goals was funded without question. I’m not requesting funding for a complex impairment, or equipment to communicate. I’m not being told to share a home with a stranger, or being denied life-saving support.

This is how complicated the NDIS is for a person in a straightforward situation. And this complexity is wasting money and needlessly making life more difficult, stressful, and exhausting for disabled people.

Some of the people involved in my planning process tried to be helpful, but seemed to lack information or the authority to act, while others acted without asking for necessary information, causing further problems. Sometimes it was hard to distinguish one from the other. In the end, however, none of them were helpful, and all of them were being paid by taxpayers, including me. The lawyer who the NDIA send to argue against me at the AAT will also be paid by taxpayers—a lot. Meanwhile, I will have to take time off work.

The headlines of unscrupulous service providers and underspending state governments paper over a story of continuing systemic problems that cannot be fixed by surveillance or money. These are the problems of: disregard for lived experience—as if forty-five years is not long enough for me to know my needs as a blind person; disregard for person-centredness؅—as if it’s appropriate for anonymous and uncontactable people to make decisions about me without me; gate-keeping—as if allowing me to have orientation and mobility will mean that every NDIS participant will want it; and bureaucratisation—as if dividing the NDIA into so many specific areas with their specific language and specific processes will result in a better understanding of my life as a whole.