I Asked for an Ordinary Life
Thirteen years ago, I walked into one of Australia’s first NDIS planning meetings. This is what happened next.
My life changed forever on July 2, 2013. And yes, I can remember the exact date because the government scheme that has allowed me to live a relatively normal life launched the day before. Pretty damn sure I was the only thirteen-year-old who was excited about new government legislation, but this was huge.
Living in one of the scheme’s trial sites, I was one of the first people in Australia standing on the doorstep of a shiny new National Disability Insurance Scheme office. We’d been waiting for this day for so long, and it was finally about to happen. My first-ever planning meeting, where I got to say what I wanted to do in my life and secure the funding necessary to make it happen.
These meetings were now going to be a part of my life until the day I died, which to any other teenager would have been the most boring thought ever. However, I understood that the alternative would be very grim, so an annual meeting to have the opportunity to live a normal life like my peers sounded like a small price to pay.
That meeting was exactly what we’d been promised. A very personal experience where my mum and I sat in a room with a woman with whom we’d become very close friends over the last few months, talking about what we both wanted my life to look like and what we needed to make that happen.
It wasn’t about how we were going to meet goals that other people had set for me, or how much intervention my mum was going to put me through to help me improve. It was about me wanting to spend time with my friends without my parents, about my goals of representing Australia and, one day, moving out of my family home and living independently.
You know, normal life for a teenager, even though I need help in every single aspect of my life. That kid had no idea how hard she’d have to be still fighting thirteen years later to keep the right to live an ordinary, boring adult life.
Mum and I were both expressing how much of a normal life we wanted.
We were also among the first people to choose to self-manage my NDIS plan, and mum was one of the biggest pioneers of that movement, literally writing the initial manual on self-management.
I received my first NDIS plan in August 2013, and one of my first typical experiences was to take my friend shopping and to dinner; back then, this was a huge difference. Before the NDIS, I needed my parents to do everything for me, meaning that I was the kid who was bringing my parents along to pretty much everything. The NDIS meant that I could employ support workers I chose, along with my mum, which allowed me to step into a typical teenage life.
After about six months on the scheme, I found myself getting asked to give presentations in front of hundreds of people who had no business listening to a fourteen-year-old who had no qualifications other than going shopping with her friends and no longer needing her mum to be the only one wiping her arse. You had to actively avoid having to see my face in the disability sector because I was the scheme’s original poster child.
Even today, if you Google my name, you’ll see the many, many speeches I’ve given.
I moved out of my mum’s house into my own private rental at eighteen, and then two years later, after a huge fight and with the help of many people, moved into my little Specialist Disability Accommodation apartment, which I have no intention of leaving except in a body bag.
I may not be a Paralympian yet, but I did get very fucking close. I represented Australia on the international stage. And that dream hasn’t completely died yet; it’s just been delayed by 12 years since I first set the goal.
When my friends were starting to find partners and start families, yes, for a few years, my life looked very different. Instead of going straight to university after school, dating, or any of the fun stuff, I played high-performance sport for two years and built a career as a public speaker. Went to university way later than my peers and then dropped out after a year. Then had surgery that put my life largely on hold for nearly two years.
But I’m kind of on track now? I adopted my beautiful girl, Winter, over two years ago now, and I can call myself a mum.
I currently have an ordinary life. I have way too many bills and have no financial security other than one savings account I fought very fucking hard to have access to. Between us, Winter and I have about a million health problems, which are a full-time job to manage. I have no stable income other than a government pension, which barely covers our survival, and people are always surprised to learn how small it is. I write full-time, which is a lot of fucking work, but it’s mine and the only way I’m going to be able to have a real job. I play boccia twice a week, with plans to ramp that back up to pretty much full-time.
Yes, I may attend a disability day program once a week, which that kid is rolling in her grave about, but I have a group of people who genuinely care about me, and I love each of them. That’s the only place I can let myself be just a person with disability for a couple of hours, until I return to the reality of my life and remember that my job never ends.
The initial promise of the scheme was to let the millions of Australians with disability have choice and control over their lives. That was going to be achieved by giving everyone on the scheme individually built plans with the funding for the reasonable and necessary supports needed to meet our goals.
Over time, however, the conversation changed.
The NDIS stopped being discussed as a social reform designed to give people with disability ordinary lives and started being discussed as a cost. Every year brought another headline about how much the scheme was growing, another discussion about sustainability, another debate about whether participants were receiving too much support.
The problem with measuring a scheme like the NDIS is that the outcomes are often incredibly boring.
The return on investment isn’t a person with disabilities suddenly becoming independent and never needing support again. The return is someone moving out of home. It’s having friends. It’s getting a job. It’s representing Australia. It’s owning a dog. It’s paying bills. It’s building a life.
In other words, it’s everything I just spent the last thousand words describing.
The scheme that allows me to live an ordinary life, like anyone else my age, is currently under the biggest threat we’ve seen.
For the first time, I am actively making contingency plans for losing parts of the life I’ve already built.
I’m not using government money to do anything other than live a boring arse life. I work, play boccia, go to the many appointments that keep me alive, and I run a house. I’m just a 26-year-old trying to figure out what the fuck to do in life.
Over the last few years, however, participants have watched the scheme move further away from that original vision. New rules, tighter interpretations of reasonable and necessary, increasing bureaucracy and a growing focus on cost containment have changed the relationship many people with disabilities, and their families have with the scheme.
They say these reforms are about sustainability, fraud and cost containment. Whatever the motivation, the result is that people like me are now making contingency plans for losing parts of the lives we’ve already built.
Even participants with lifelong disabilities and well-documented support needs are now being asked to prove what hasn’t changed repeatedly.
I’m never going to need less than 24/7 support. I tried once and broke my body (hence needing brain surgery). While yes, I can keep myself alive, my quality of life was almost none. I had people coming in to meet my personal care needs every few hours, and a sleepover. That was it. I could handle an independent life outside needing people to feed, water and change me, because that was what is sold to people with disabilities who have the capacity to manage themselves. But, between managing people, managing a house when only a few people are good at keeping you updated on what’s in your pantry and fridge, working, getting taxis everywhere because you can’t just jump in your car and drive, making sure you’re getting the right staff rostered on so you’re not stuck training people by yourself, independence in the sense they usually talk about starts to become one of following your life like a train schedule.
Turn up late for a service, even though they arrived half an hour early, for no apparent reason other than that they felt like it? Better expect a message from the office asking where you are. Also, you’re in trouble because they have places to be and never have time to stay for the whole service, so the very job they’ll gladly charge the full two hours for actually needs to be done in half an hour.
A person you’ve never met turns up with no second person in sight? Congratulations, are you ready to train a stranger even though you’re tired and won’t be able to communicate during critical points? No? That’s your problem.
The other way they want to “cut costs” is by reducing social and community funding by half.
The irony is that social and community supports are often the very things that create the outcomes the scheme claims to value. Friendships. Employment. Independence. Participation.
I’m living the life we were promised thirteen years ago. Boring as hell. Ordinary. In my own apartment with a gorgeous dog and an amazing team of people I help employ. When there’s a new reform being announced on social media pretty much every day, that could jeopardise that? Of course, I’m terrified and exhausted. I’m working hard to build an income so that in case shit really hits the fan, I may be able to afford to go back to a private rental, because having to share a house with another person isn’t exactly something I’m interested in.
Every year, I have to get a bunch of reports written proving that my support needs haven’t changed. After thirteen years, I still need to convince multiple people, most of whom I’ll never meet, that I can’t do anything independently. Get even one word wrong? My life potentially gets deadly.
That’s where they should be cutting costs, not trying to catch people out on vague support needs. These reports, which, in my case, will never say anything other than what they’ve said for the last thirteen years, cost thousands of dollars to write. And even if I trust my therapists to write exactly what they need to, I still go through each of them, word by word, to make sure that whoever or whatever is reading them (rumour has it that it’s now AI) has no reason to cut my funding or do something stupid. And even then, it’s not guaranteed that I’ll get the same funding I need to stay alive, let alone keep the life I have.
Throughout the scheme’s history, the only ambitious goal I’ve had has been to represent Australia at the Paralympic Games, and even that seems ordinary once you see me on a boccia court. The rest of my goals? Boring as fuck. Ordinary life shit.
The NDIS promised people with disabilities that we could live our lives our way. What happens if budgets decide that giving people that right is too expensive?
I don’t want to find out, but I probably will, sooner rather than later. I’ve even had to think about contingency plans for when shit eventually hits the fan.
That’s not very ordinary.
My life looks pretty ordinary. I choose pretty much everything about my life, except what I wear, because it turns out I don’t care about that. I decide when I get up, what I do each day, and who supports me.
I’ve spent thirteen years building the life I asked for in my first planning meeting.
An apartment, by myself. Boccia and work. Friends and bills. Even got a dog that thirteen-year-old me would be shitting herself over, literally. But then again, she’d never met a greyhound.
That’s not something anyone should have to fight this hard to keep.
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