03/08/2026
This photo was taken many years ago.
3 little kids in a bath, laughing, cuddling and completely unaware of what life would have in store.
1 of those little boys has an incredibly rare and complex neurological condition.
Over the years, we’ve spent countless hours in hospitals, with specialists, ambulances and emergency departments.
We’ve learnt that not every presentation fits neatly into a textbook, and sometimes the person with the greatest understanding of someone’s condition isn’t the person with the medical degree. It’s the person who has lived it every single day.
Over the past week, I’ve been reminded just how important lived experience really is.
At Mildura Disability Support Services, this reinforces something we’ve always believed.
We never assume we know a participant better than the people who love them most.
Families, carers and those closest to a participant hold knowledge that can’t always be found in medical records, assessments or reports.
Their observations matter.
Their instincts matter.
Their lived experience matters.
The best outcomes happen when professionals and families work together, listen to one another and genuinely value each other’s perspectives.
That doesn’t diminish clinical expertise.
It strengthens it.
Every participant deserves to be seen as an individual, not just a diagnosis or a set of behaviours. Sometimes asking one simple question, “Have you seen this before?”, can make all the difference.
At MDSS, we’ll continue to advocate for person centred care, collaborative decision making and recognising the value of lived experience.
Because when we truly listen, everybody benefits. ❤️
