How to Prepare for an NDIS Planning Meeting
If you've got a planning meeting coming up and you're already dreading it, you are not overreacting. Most people find these meetings hard. Here's how to make yours less of a fight.
Thoughts from Madeleine
Posts
Stories and plain-language guides about speaking up, knowing your rights, and dealing with the systems that are meant to support you.
What Does Self-Advocacy Actually Mean?
Wondering what people actually mean when they say “self-advocacy”? It’s a word that gets used constantly, in NDIS plans, in service brochures, in strategy documents, and hardly anyone ever stops to explain it properly. Here’s what it actually means, and what it doesn’t. Honestly, this one bugs me a bit. Self-advocacy gets treated like everyone
Five Specialists, Zero Conversations With Each Other
At one point I had five specialists involved in my care, and not one of them had spoken to another. I was the only person who knew the full picture, and I was the least qualified person in the room to be making sense of it. Every specialist looks at their own slice with real
I’ve Explained My Condition More Than My Doctors Have
I’ve lost count of how many appointments I’ve walked into and ended up teaching the person meant to be treating me. Explaining my own condition, correcting an assumption, printing out research because nobody had time to look it up themselves. Patients with less common conditions are quietly expected to do homework the system hasn’t done.
Nobody Warns You What Getting Better Actually Costs
The bill that hit me after I left hospital wasn’t the surgery. It was everything that came after. Taxis because I couldn’t drive yet. A ramp I had to pay for out of pocket while the “proper” one got assessed. Time off work nobody was going to reimburse. I’d braced myself for the hospital cost.
They Approved My Wheelchair. Nobody Delivered It.
Approval isn’t the same as having the thing. I’ve learned that the hard way more than once. Something gets signed off, everyone moves on to the next case, and somewhere between the approval and my front door there’s a gap that nobody actually owns. Assessment, funding, and delivery all sit with different teams, and each
A Score Decided I Was Low Priority Before Anyone Met Me
Someone ran a risk score on my file once before I’d said a word to anyone. Age, history, a few flags in a database, and out came a number that quietly decided how urgent my case was. Most people have no idea how much of this happens before a human actually looks at them. These
Nobody Should Be Discharged at 4pm on a Friday
I know someone who got discharged from hospital at quarter to five on a Friday. No equipment sorted. No support worker booked. No way to reach anyone until Monday. She spent the whole weekend in a chair she wasn’t even supposed to be in, waiting. Anyone who’s worked in the sector will recognise this pattern
A Code Number Never Once Asked Me How I Was Doing
Every assessment I’ve ever sat through ends the same way. My actual answer gets translated into a code, a number tucked into a category that someone else will read later without me anywhere in the room. I get why coding exists. Systems need a way to compare and track and justify funding across thousands of
The AI Was Trained on People Who Aren’t Me
A friend told me her new symptom checker kept missing things that were obvious to her. I wasn’t surprised. I asked her what she thought “clean data” actually meant to the people who built it. She hadn’t thought about it that way before, and honestly, most people haven’t. Clean data usually means the mess has
Having a Diagnosis Younger Shouldn’t Mean More Paperwork, Not Less
I found out early, which you’d think would make things easier. It doesn’t. The earlier your diagnosis, the more paperwork seems to follow you around for the rest of your life. Every application asks the same question wearing a different outfit: prove it again. Show them you still have the thing you were born with,
Nobody Taught Me the Rules of the System I Was Born Into
We’re all born into systems that were built long before we arrived. Funding rules, eligibility criteria, forms that ask the same question five different ways. Nobody hands you a manual. I remember sitting in a meeting early on, listening to someone explain why a support I needed didn’t fit the criteria. Not because I didn’t