How a $119 delivery fee turned into a $4000 ordeal

On the outside, I'm an autistic success story. I was dux of my high school and moved to the city for university, studying in two languages, in Australia and then Germany, to earn a double degree. After holding full-time employment for several years, I was headhunted for a PhD scholarship, and I've lived both alone and with housemates, never once missing rent. I'm thoroughly, excessively independent.

But I've also always struggled. I grew up in poverty in a regional town, and at 16, my father died. At 27, my mother died. As well as being autistic, I live with multiple disabilities, crippling depression and anxiety, and the stress of managing my autistic twin sister's bipolar disorder and chronic suicidality.

I know my life of complex medical and social trauma has complicated my "development". I struggle to make friends, have never had a partner, and battle to find meaning in anything except work. Now, at age 30, I've never been so isolated. I'm desperate for help.

My story isn't unique. The research shows that poverty, trauma, disability, and social isolation go hand-in-hand. Thankfully, Australia has a lifeline - the National Disability Insurance Scheme (NDIS), which was designed to support the dynamic and complex needs of disabled children and adults, shouldering some of the cost of being disabled while linking us to the help we need.

Like many disabled people, I know what help I need. In fact, I already fund what I can.

I see a psychologist, psychiatrist, a psychosexual therapist, a GP, and a rotating list of specialist doctors for my various immune and congenital conditions - an ENT surgeon, dermatologist, cardiologist, and gynaecologist, just to name a few. My appointments and therapies are time-consuming and emotionally draining, but they're also oppressively expensive.

So a year ago, on the advice of a therapist, I began the process of applying to the NDIS.

Despite many of my needs being directly linked to my autism, I don't know if my request to access the NDIS will be granted. Amid endless talk of budget blowouts and the government vowing to reign in NDIS costs, I know I may be considered too "high functioning" to warrant help.

Even if I am granted access to the NDIS, my disabled friends warn, the administrative hurdles are monumental. It won't be as easy as getting some of my therapy covered. Instead, I'll receive an allocated budget I can only spend in very specific ways, usually through third parties that charge exorbitantly. One NDIS recipient recently old me how she needs a smartwatch to track her heart rate. Though it had a store price of just $200, it cost her over $1000 through the NDIS.

But the cause of the NDIS cost blowouts isn't just the third parties making money off vulnerable people. The problem lies in the paternalistic way the government sees disabled people: we, along with our carers, just aren't trusted to spend the funds ourselves. Instead, we're made to jump through bureaucratic hoops to get permission to buy goods and services that sometimes make no sense and often cost much more than they need to.

One woman with mobility issues recently told me how the NDIS refuses to pay a $119 annual grocery delivery fee, instead opting to pay $4000 a year so a support worker can collect the groceries for her. Another told me how she is charged $4000 out of her NDIS plan for an annual occupational therapy report.

"That money would be life-changing if it was able to be used effectively and not on a stack of paper that gets thrown in the bin", she told me.

And that's the problem. We know our situation better than anyone else, yet we remain at the mercy of those with the right rubber stamps making detached decisions about our needs. Of course, some participants require help in this regard but many of us are more than capable of making informed decisions about our care. We're just not allowed to.

Obviously, oversight of government spending is important, but that shouldn't be at the (literal) expense of the autonomy and agency of people with disabilities.

To start, the government needs to accept that disability is an inevitable part of life, and future-proof the NDIS accordingly.

Currently, more than 4.4 million Australians have a disability, or around one in six people. Most of these people need some kind of assistance, yet only around 600,000 people currently access the NDIS.

Clearly, with an ageing population and so many people with disabilities in need of help, now is the time to invest wisely in the NDIS.

It also makes sense financially: for every dollar spent on the NDIS, the Australian economy receives a return of $2.25.

Socially, it's also the best thing we've ever done for Australians with disabilities, addressing our vulnerability, and taking seriously our quality of life.

But to keep making strides toward a future that is accessible and affordable for all people with disabilities, the government must also loosen its paternalistic grip on NDIS participants.

People with disabilities and our carers should be considered the experts of our lives. Nobody is more invested in our independence and quality of life than we are, and we know exactly what help we need, and how to get it efficiently.

Trust me: trusting us would save a truckload.