The participant lived experience statement

Most of the paperwork in an NDIS plan is written about you by somebody else. Reports, assessments, letters from people who saw you for forty minutes.

A participant lived experience statement is the one piece written by you. It says what your disability actually does to an ordinary day, in your words.

You do not have to write it beautifully. You have to write it honestly.

When a participant lived experience statement helps most

Two moments matter most. When you are asking for more funding because things have changed, and when you are going into a plan reassessment and want to keep what you have.

In both, someone is trying to picture a life they have never seen. A report tells them what you cannot do. Your statement tells them what that costs you.

Write the day, not the diagnosis

Start with an ordinary day and walk through it. Getting up. Getting dressed. Making food. Leaving the house.

What takes longer than people think. What you have stopped doing. What you need someone there for.

Be specific. "I have trouble showering" is a sentence. "I cannot shower unless someone else is home, so I wait until Thursday" is evidence.

Then say what it costs

This is the part people skip, and it is the part that lands.

What have you given up. What do you do less of. What happens on the days the support does not turn up. How does it land on the people around you.

You are not complaining. You are answering a question nobody can answer without you.

Keep the numbers on it

The letter format numbers each section on purpose. The person reading it is working through a file and may need to point a colleague at one part of it. Numbers make that easy, and easy is persuasive.

Half full is fine

You do not have to fill in every section. Four honest paragraphs beat a blank page, and they beat three pages that say nothing.

Write it once and keep it. Before the next reassessment you update it rather than starting again.

If you are the carer, not the participant

There is a companion to this one. The carer lived experience statement covers the same plan from the other side, and comes with its own letter format. Plenty of families send both.