The NDIS is no help if it limits us more than our disability does | Pete Mailler

I was 15 when my right leg was amputated through the knee.

I am not an amputee who farms; I am a farmer who happens to have one leg. I do not differentiate myself based on my limitations, and I don’t want others to. I get on and do what is required.

I am also a national disability insurance scheme (NDIS) participant, but with all the good intentions behind the scheme, I’ve come to understand it is hopelessly flawed.

In my experience, the current culture of the administrator of the NDIS – National Disability Insurance Agency (NDIA) – curbs peoples’ opportunities by focusing on and rewarding limitations.

This is the opposite of what it was intended to do. According to its website, “the NDIS is designed to help people get the support they need, so their skills and independence improve over time”.

If I lead with my disability, it is all that people see

But to get the necessary support, wemusto explain and demonstrate how disabled we are, how needy we are, and how much of a burden we will be to the rest of society.

Most people see disabled people as something less, but I have refused to let my disability define me. If I lead with my disability, it is all that people see.

So if we support people with disabilities, we must ensure the bureaucracy does not limit them more than their disability does.

Consider my story. My amputation was necessary due to ongoing complications from the otherwise successful treatment of a rare and aggressive cancer at two years old.

Pete Mailler

The orthopedic surgeon informed me that I was very fortunate because 15 was the best age to lose a leg. I was a little dubious that there was a best age for something like that.

When I was about 17, I was assessed by a commonwealth medical officer and deemed disabled enough to qualify for the disability support pension.

I was told then that I was only 15% as capable as a non-disabled person. That doesn’t leave me wondering how I have done what I have done. It makes me wonder why non-disabled people have done so little.

I took the disability pension while I went to university. I ultimately wanted to prove that all those who sought to limit my potential based on their perceptions were wrong.

I can’t say with certainty that I have achieved everything I could in life. Like everybody, I know there are things I could have done differently and better.

Nonetheless, I did realize my “unrealistic” ambition to farm, and, for the most part, I have been pretty good at it. I married up, and we have great kids. I have actively advocated for better outcomes for my community and industry.

I have found my physical limit a few times.

I am not stupidly proud. I take help when it is offered. I accessed available government support to get prosthetic limbs and contributed.

Then, in early 2017, a polite lady told me that my region was being transitioned to the NDIS. She suggested that I be assessed to determine my eligibility for the scheme.

I asked about the criteria, and she said I might be permanently disabled. She said that she had my records from the Queensland Amputee Limb Service.

I asked, “So you know I am an amputee then?”

She responded with a yes.

I asked: “You know legs don’t grow back, right?”

Things went downhill with the NDIS from there.

I was assessed. This included a several-hour sit-down interview with three non-disabled women I did not know. They insisted on discussing how I dress, use the toilet, and even my sex life. I wore a pair of shorts so that they could see I was an amputee, but that wasn’t enough.

It took nine months for the NDIA to agree I was eligible to participate in the scheme and then two years of arguing about what they would fund before supporting anything.

They were very keen to install handrails in my toilet (which I didn’t need) and very reluctant to fund the computerized knee prescribed by two separate prosthetists (which I did need).

Ultimately, I had to take the NDIA to court to get funding approved for the necessary tech for my prosthesis. I had to navigate these processes largely on my own.

I learned quickly that being based in regional Australia was a major disadvantage to participating in the scheme.

The NDIS was rolled out in capital cities first. Getting technology funding approved at the beginning of the rollout was far easier.

Regional participants were instantly at a disadvantage by late entry. By then, there was a growing concern about the true cost of the scheme, and a much more conservative attitude to funding prevailed.

There is a much lower level of support in regional areas because there aren’t enough participants in many regions to encourage or justify the same level of service as there are for city-based participants.

As a result, I was disadvantaged, not only because I lived in the bush but also because I was late to enter the scheme. Ironically, I was further penalized because I had worked so hard doing what I could with my life that they argued I wasn’t in need.

Once the funding was approved, it made a difference. Before the new knee was fitted, I fell almost daily while working. Since the new knee was done, I wouldn’t lose even monthly.

The outcome of poor biodynamics associated with being an amputee means I am getting old faster than my mates. Beyond this, my injuries from falling over at work for over 30 years have taken their toll, and my physical working life is now limited. My amputation has finally started to disable me.

Undoubtedly, if I had been able to access better tech sooner, my working life would have been extended. There would have been a better return to the taxpayer if they’d enabled me to work longer, rather than the dumb argument that because I was “high functioning,” I didn’t deserve further support.

Sometimes people condescendingly ask me how I do what I do. I started by thinking that I could. I don’t think I have done anything remarkable.

Bella E. McMahon
I am a freelance writer who started blogging in college. I am fascinated by human nature, politics, culture, technology, and pop culture. In addition to my writing, I enjoy exploring new places, trying out new things, and engaging in conversations with new people. Some of my favorite hobbies are reading, playing music, making crafts, writing, traveling, and spending time with my family.