August 16, 2021
Last week, after a month of confusing phone calls, long trips to NDIS offices and countless empty promises, I was finally able to get my funding reallocated to pay my support workers. To recap, my funding was misallocated as agency-managed instead of self-managed due to an error made by NDIS planners.
I went into detail about this in my last post; click here if you want the back story.
The kicker is… this error would have taken all of two minutes to solve, as I was told repeatedly by NDIS employees. So why did it end up taking a month to get this rectified? And why am I not the only participant who has been through this? These are my questions to the NDIS.
Over the past few years, a significant take-away from my experience with the NDIS is that most employees seem like they genuinely want to help but are unsure how to proceed. I was reminded of this again on multiple occasions over the last few weeks. Which begs the question… Where is the protocol? Where is the training? Are employees not prepared for situations like this to occur? And shouldn't they be able to give participants some clarity, if anything? Especially when participants feel that their lives are at risk.
The NDIS claims in their values that they put their "participants at the heart of everything they do" and "deliver on their promises" but when were these values in play when one of their very own participants needed them to fix a mistake that they made?
Despite finally getting this actioned, it got me thinking about the process and how long it took to get there. I'm unsure if it was a mere coincidence, but I only saw action when I took this matter public. On the fourth week of inaction, I sent emails, letters and posts across various social media platforms. In my posts, I tagged multiple politicians, including Linda Reynolds, Minister for the NDIS and Bill Shorten, Shadow Minister for the NDIS, in hopes that they could sense my urgency.
To my surprise, I received a lot of responses on LinkedIn, including comments from Bill Shorten. He criticised the government for their treatment of NDIS participants. A few people reached out to offer some solutions, which is more than I got from the NDIS. Other comments congratulated me on my self-advocacy, and others reported their own similar experiences or stories from people they knew.
It seems like reaching out to these politicians was the best way to get my voice heard and to make headway. So why does it take us kicking and screaming for the NDIS to get the job done?
Reading the experiences of others made me think, what about people with disability who don't have the capacity or aren't comfortable challenging these industries when they are put in harm's way? Who speaks up for them? What happens to them? It's generally thought that if you speak up or rock the boat, there will be consequences for those actions. This results in people often accepting their fate, but how do we hold these industries accountable and motivate them to do better?
I think this speaks to a much bigger issue about how society treats people with disability or any other marginalised group. We're often a secondary thought. People with disability are typically treated as objects of pity. It's often assumed that we are unable to speak for ourselves or know what we need. This needs to stop. Many of us are completely aware and conscious of our needs and wants and deserve to have those met, just as any other able-disabled person in society.
This past month aside, I'm grateful for the opportunities I've been given through funding from the NDIS. Through them, I was able to fulfil my lifelong dream of getting an apartment on my own in the city. I was also provided with double the support hours for things such as help with my business, community access and assistance with daily living. These changes have improved my quality of life. However, this doesn't mean we should shut up and just take what we're given. If there is an issue, particularly one that risks our well-being, we should be able to call it out. People with disability deserve everything they require in life and shouldn't feel like they can't ask for it.
The NDIS claim that they want to empower their participants to live an ordinary life. My ideal ordinary life consists of running a business and building my brand, but this last month cost me thirty hours dealing with this issue when it could have been fixed in 2 minutes. This valuable time could have been used to make my business profitable and contribute to my ordinary life.
Living with a disability is already a challenge. Simple tasks like eating or showering take me far longer than it would a non-disabled person. Why must I spend my time-fighting NDIS just to have an ordinary life when most people don't have to? I write this in hopes that my real lived experience can improve these processes so these industries can do better in the future.