A family’s NDIS journey: advocacy, change and reliable support
Our Family’s NDIS Journey. 5 Lessons on the Challenges and What Works
By Michelle Tansey · Originally published 20 February 2026
Original article
Michelle Tansey is a sister to two brothers living with disabilities who are long-term NDIS participants. She works in digital marketing and is the founder of Red Queen Marketing. Michelle writes on a range of topics including disability, finance, and travel, drawing on lived experience and a desire to make complex systems more human and easier to navigate.
When the NDIS first became part of our family’s life, my initial reaction was relief.
It was presented as something positive, a way to ensure that family members with disabilities could access funding and support to have their needs met. After years of navigating informal systems and patchwork solutions, the idea of a structured framework felt reassuring.
I want to be clear from the outset: I’m not a medical professional or an NDIS expert. I’m a sister to two brothers who are participants in the scheme. This article isn’t advice, it’s a reflection on what being close to the NDIS has taught me about the system, advocacy, and what tends to make a meaningful difference over time.
Lesson 1: the NDIS is a full-time job in itself
One of the earliest lessons was that the NDIS isn’t something you learn once and then put on autopilot.
At its core, it operates as a budget, and as circumstances change, that budget and the supports attached to it need to change too. This is especially true for children, whose needs evolve as they grow, but it applies just as much to adults. Conditions can progress, new challenges can emerge, and what worked previously may no longer be adequate.
In our family’s case, one of my brothers has experienced vision deterioration as he’s gotten older, increasing the complexity of his support needs. That alone made it clear that plans and supports need to be revisited regularly, and to do this we needed to be able to know when we needed to start the process for more funding. Understanding the theory, and navigating it in practice, are very different things. I've found the NDIS website to be helpful with this.
[Clickability update, September 2026: Current reassessment guidance requires the participant, nominee or child representative to make the request, with relevant evidence of significant ongoing changed circumstances. A family member is not automatically authorised to request it. Read the current process.]
Lesson 2: it requires a lot of admin, bureaucracy and systems
What surprised me most early on was the sheer volume of administration involved.
The NDIS is highly process-driven. Forms, reviews, approvals, and provider coordination quickly become part of everyday life. Things are rarely straightforward, and it can be difficult to get clear or consistent answers, particularly when needs don’t fit neatly into predefined categories.
This is where having the right people around you matters. A good plan manager or account manager doesn’t remove complexity, but they can make it far more manageable.
Lesson 3: advocacy is not optional
Another reality that becomes clear very quickly is that advocacy isn’t a phase, it’s ongoing.
This is often most obvious during periods of change, such as budget reviews or when supports need adjusting. We’ve been in planning meetings where we were required to explain, justify, and re-explain why certain supports are necessary, and to push back when options offered don’t suit our needs.
Advocacy also extends to choosing providers. It’s not just about finding a service, but the right one. Cost alone isn’t a reliable indicator of quality, and families often need to advocate for supports that prioritise outcomes over convenience.
For carers, this role adds to an already significant emotional and practical load. I’ve watched my parents be drained during the process of caring and advocating for my siblings. Resources like Carer Gateway exist to acknowledge and support the work carers do alongside formal systems.
Lesson 4: a good NDIS plan leads to better consistency of care and more access to practical support
Every family’s experience is different, but for me I noticed a few benefits that have worked for our family.
Consistency of care matters. When participants have access to reliable, capable support workers and coordinators, outcomes improve, not just for the individual, but for the household. Knowing the names of carers that are in our household makes it much easier and my brothers develop relationships with their carers. Research and lived experience suggest that when care is consistent, stress reduces, routines stabilise, and carers are less likely to burn out.
Practical supports also make a meaningful difference. In our experience, having funding available for regular equipment upgrades, additional physiotherapy, and increased support as needs changed helped prevent small issues from becoming bigger ones. These adjustments may seem modest on paper, but day to day, they significantly improved quality of life.
Lesson 5 disability support isn’t one size fits all
Being close to the NDIS has reshaped how I understand disability support. It’s reinforced that care is never one-size-fits-all.
Needs are deeply individual and often evolve as understanding grows. What initially looks like one issue may later be identified as something else entirely. In many cases, people with disability aren’t able to clearly articulate what feels wrong, which means needs can take time to surface.
National data helps put individual experiences into context. According to the Australian Institute of Health and Welfare, disability in Australia spans a wide range of experiences, conditions, and levels of support need, many of which change over time.
Hearing loss is one example of a widespread but often overlooked support need. Recent national data published by Audika shows that around 3.6 million Australians, nearly one in seven, live with some form of hearing loss, with demand for hearing support increasing significantly in recent years. Despite this, the average age people first seek hearing support is still their late 60s or 70s, highlighting how long some needs can go unaddressed.
For me, this reinforces a broader truth: many families are navigating challenges that aren’t immediately visible, and support needs don’t always follow a predictable path. Conditions can improve, but they can also deteriorate and systems need to be flexible enough to respond to both.
[Clickability update, September 2026: The 3.6 million estimate also appears in a government hearing-health factsheet published in 2023. It is not a new 2026 prevalence count. The export does not establish the additional average-age or increasing-demand claims. Read the dated government factsheet.]
It’s hard - but it can have a rewarding impact
If there’s one thing this journey has taught me, it’s that you don’t need to be an expert, but you do need to be engaged.
The NDIS can be life-changing, but it requires persistence, learning, and advocacy. Knowledge helps, strong support relationships help even more, and flexibility is essential, both from families and from the system itself.
For families just starting out, it’s worth knowing that confusion and frustration are common, but so are progress and small wins. Over time, understanding grows, support improves, and what once felt overwhelming can become more manageable.
This is just one family’s experience, but it sits alongside many others, each navigating their own version of the journey.
Clickability editorial update: September 2026
How families can prepare for a change without making the case alone
With the participant’s permission, collect concrete examples of what has changed, which support no longer fits and the effect on daily life. Keep clinical evidence, provider observations and the family’s own experience clearly identified.
Ask a support coordinator which information would help organise services and prepare a discussion. Keep the formal NDIA request and decision separate from the help providers offer.
What participants can keep in view when family members advocate
Agree which decisions you want to make yourself and what help you want with letters, meetings or follow-up. Ask the team to speak to you in a format you can use and explain how your own preferences appear in the request.
A family member’s concern can be useful information without becoming your whole story. Review the proposed support against your priorities before agreeing to a change. Read the participant-centred rights standards.
Questions readers ask
Does a family story establish the same funding for someone else?
No. The supports and changes described are that family’s experience; other plans need their own decisions and support-rule checks. Official guidance
Can families ask for help with their own caring role?
Yes. They can contact Carer Gateway to discuss eligibility and appropriate services. Official guidance
Find coordination for the next stage of your support
Describe the services and practical changes you need help organising through Clickability. Compare support-coordinator profiles and reviews before deciding who to contact.
