Navigating Life with the NDIS
In my previous post “Finding Strength in Uncertain Times”, I shared a bit about my story leading up to my diagnosis and my early experiences with limited support systems before the NDIS existed. Back then, accessing necessary care and equipment was often a challenging, bureaucratic process, and many of us were left to figure out how to navigate the gaps in the system.
Now, let me tell you about how my life changed with the arrival of the NDIS in 2017 and the new challenges and victories it brought along the way.
On the 26th of January 2017, I received a letter saying my transition to the NDIS would soon begin. It felt like the start of something new, but also something uncertain. Five months later, on the 29th of June, the NDIS finally rolled out in the Illawarra, and I became one of the first participants in the region. Being one of the pioneers, one of the first to step into this uncharted territory, brought with it its own set of challenges. Between January and June, a Local Area Coordinator (LAC) visited me to complete my initial plan meeting. It was their first day on the job, and they didn’t even know how to use the software. I remember watching them fumble through the process, wondering how they could work out what funding I was entitled to when they barely knew how to navigate the system themselves.
In 2017, I was also funded for my first Support Coordinator, Samantha Potter, who I’ve been with ever since. Samantha became an essential figure in my life, helping me make sense of the labyrinth that is the NDIS. She fought for more funding as my needs grew, and in doing so, taught me the skills and knowledge I now use to help others as an NDIS navigator. In many ways, she empowered me not just to advocate for myself but to become an advocate for others, a role I never thought I’d take on but one that has become a cornerstone of who I am today.
In the early years of the NDIS, there were plenty of frustrations. If your wheelchair broke down, you couldn’t simply get it repaired. The process was absurd: an occupational therapist had to come out and confirm the break, you needed to gather three quotes from different repairers, then submit them for NDIA approval, which could take months. And in the meantime, you were left stranded without a wheelchair. It felt like being punished for needing essential equipment. The whole process was so nonsensical that I paid a visit to the NDIA office in Wollongong—a location that wasn’t supposed to be public, but my support coordinator managed to find. I explained the situation to the staff member there. I remember asking her, “If your leg broke, would you be willing to go through this process?” She hesitated and then admitted, no, of course she wouldn’t. She would expect to get it attended to immediately.
The system felt incomplete, lacking the transparency and flexibility needed for real life. At first, all funding was agency-managed. You could be self-managed, but the lack of information and the daunting reports required made it too overwhelming for most. Being agency-managed restricted me to registered providers, and at the time, there were very few in the area. Anything equipment-related had to come from Sydney, and options for support workers were scarce, leaving me feeling stuck in a system that promised freedom but delivered limitations.
Yet, despite the roadblocks, the NDIS gave me something I hadn’t had in a long time: the ability to attend in-person classes and pursue my education. With the help of support workers, I could attend TAFE, take notes, and receive personal care throughout the day. For the first time in years, I had the freedom to engage with the community on my own terms. That sense of independence, as small as it might seem, was a major victory in a life that had become so defined by what I could no longer do.
As I embraced the support of the NDIS, my focus shifted towards education and personal growth. From 2017 to 2024, I pursued various learning opportunities at TAFE and beyond, expanding my skills and reigniting my passion for learning and gardening. I began with certificates in School Gardening and Therapeutic Gardening, which laid the groundwork for my interest in sustainable practices. This journey included earning both Certificate III and IV in Permaculture, alongside a Certificate IV in Mental Health. I also completed modules from the Comorbidity Guidelines to enhance my Mental Health studies. In 2023, I furthered my education with a Certificate in Digital Technology and a Certificate III in Entrepreneurship and New Business, culminating in a Certificate IV in Accounting and Bookkeeping. Additionally, I completed courses from The Open University, including "Understanding Autism" and "Introduction to Child Psychology." I also undertook all the NDIS modules from the Quality and Safeguards Commission to gain insight into best practice. Between 2018 and 2020, I maintained an accessible garden at TAFE, contributing to a supportive environment while honing my practical skills. These achievements were made possible through the support of the NDIS, allowing me to reclaim my independence and engage with my community in ways I had long thought impossible.
Over the years, I’ve experienced a mix of challenges and victories. Regaining my independence wasn’t a quick task; it involved significant trial and error, particularly in finding the right fit with support workers. It’s important to remember that we are all individuals, and it’s normal for personalities to not always align. Discovering someone who matches your energy, needs, and values requires perseverance. At first, I relied on support companies, which, in one way, offered assurance in having support workers show up (unfortunately, not always the case). However, there were often mismatches due to miscommunication or providers sending new staff without my prior approval. This became particularly frustrating when they insisted on requiring a two-person service, despite my occupational therapist's assessment that it was unnecessary.
Over time, I recognised that I needed more control over my care. This prompted me to transition to independent support workers. While covering staff when they are unwell can sometimes be challenging, building a reliable team of support workers who are willing to step in for each other makes all the difference. The advantages of having a personalised team that truly understands my needs far outweigh any associated risks. With independent workers, I have the opportunity to train them according to my preferences, allowing me to choose who cares for me in a 24/7 routine. This aspect of control has become invaluable. Having a say in my care helps me maintain a sense of independence in a situation where I often feel my autonomy slipping away.
Throughout my experiences, I faced frustrating moments when the NDIS system felt nearly impossible to navigate. Yet, with persistence and support from my coordinator Samantha, I turned each roadblock into a lesson, deepening my understanding of both the NDIS and myself. While I’ve seen some systems evolve and streamline, others remain frustratingly bureaucratic. Despite these challenges, I’ve learned to advocate for myself and others, staying hopeful for positive changes. This journey has reshaped my perspective and empowered me to help others navigate the complexities of the NDIS through my business—though that’s a story for another time.
What lessons can a participant-turned-advocate offer to both individuals and providers navigating the complexities of the NDIS? In my next post, I’ll share how Building With Strength empowers others to take control of their NDIS journey.