Finding Strength in Uncertain Times
Navigating the NDIS can be rather tricky. Whether it is for the providers or the participants. I can talk from experience here, being both at the same time. But I guess that before I go on about how I am managing this, and how I get by with all the nitty gritty of the scheme, I should tell you a little bit about me.
My name is Michelle Garland. In 2004 I was working as a Primary School Teacher when I was diagnosed with Motor Neurone Disease. Back then, I knew little about MND, aside from the fact that Stephen Hawking had it. So, I can understand if it’s new to you too. Motor Neurone Disease (also called Lou Gehrig’s disease or ALS) is a group of progressive neurological disorders that affect the nerves (motor neurones) responsible for controlling muscles, leading to weakness, muscle wasting, and eventually loss of mobility, speech, and the ability to breathe.
If there’s a rare form of something, it seems I’m always the one to draw the short straw. In Australia, around 0.008% of the population has MND – that’s just over 2,000 people. And the odds are even steeper when you consider that the majority are men, usually in their 60s or 70s. I was only 31 when I was diagnosed. Finding yourself so far outside the norm is an experience that reshapes your perspective on life. And while I have the most common variant – Upper and Lower ALS – fate still handed me the rare “slow-progressive” form. In a way, it’s an extended journey of loss, unfolding over time, but it forces you to find strength in places you didn’t know existed.
From 2004, I shifted my focus to teaching smaller groups, concentrating on their individual strengths and weaknesses. My principal, understanding my circumstances, allowed me to stay at the school but adjusted my workload to make things more manageable. I continued in that role until mid-2006, when I transitioned to working from home, developing teaching units and creating resources to support the curriculum. That arrangement lasted until the end of 2008.
But this was before the NDIS existed. There was no funding, no support system to help me navigate the growing limitations of my body. Without any of that, it became impossible to step into the office and be seen as a person, rather than just a name at the end of an email. In late 2008, the department made the decision to medically retire me.
Retiring at such a young age – in theory – sounds like a blessing, but for me, it was something entirely different. Teaching wasn’t just a job; it was the core of my identity, the rhythm of my daily life. And in a single decision, I lost that. It’s hard to put into words the emptiness that comes from losing not just a career, but a part of yourself. Suddenly, I was left with a question I didn’t have an answer to: without school, without teaching, who am I?
In 2009, I completed a correspondence course in editing and proofreading, marking the start of my many years of further learning. It felt like a small victory, a way to stay engaged with the world despite my limitations. But outside of that, my days were largely consumed by the background hum of daytime TV. Endless hours of Oprah and Dr. Phil – a routine that, over time, felt more numbing than enriching.
From 2009 to 2013, I found myself increasingly dependent on my mother and husband for care. Coming to terms with having those closest to you manage your most intimate needs is truly difficult. For a long time, I struggled with the vulnerability of needing help with things most people take for granted. It’s one thing to lose control of your body; it’s another to watch those you love become your caregivers.
In 2013, I began receiving Home Care through ADAHC (Aging, Disability and Home Care). While this provided some support, the funding was limited and measured in hours rather than dollars. The restrictions were confining—support workers weren’t even allowed to take me outside the house. I wasn’t permitted to leave my home, not even for a simple walk. But one of my support workers saw how limiting this was and found ways to blur the lines. She’d take me out with my dog, Roux, and arrange for her family to pick us up for a few hours. According to her supervisor, she wasn’t allowed to drive my car, so she’d ask her aunty to come along. Technically, she never broke the rules, but she found a way to bring some much-needed freedom into my life.
Accessing necessary equipment through ADAHC was another challenge. I needed a new wheelchair after losing weight, which made my current one unsafe. But because it was still deemed functional, I was put on a three-year waiting list. For something as essential as a wheelchair, that wait felt unbearable. I was fortunate enough to have the financial means to purchase a new one myself, but I knew many others were stuck in limbo, waiting for something they couldn’t afford on their own. The system, in many ways, felt like a lottery—one where too many people lost.
In 2016, I transitioned to the Community Care and Support Program (CCSP), the NSW precursor to the NDIS. This gave me much more flexibility in how I could use my funding, as it was finally provided in dollars rather than hours. With that freedom, I could purchase small pieces of equipment without the long, drawn-out process of going through ADAHC. It was a small shift, but it made a world of difference in reclaiming some control over my life.
How can a support system like the NDIS transform not only your care but your independence and outlook on life? Discover how my journey took a new turn with the introduction of the NDIS in my next post.