Disability support as needs change
These resources are for people living with rare, progressive conditions whose disability support needs may change over time.
They form part of the Rare Disease Disability Toolkit.
In partnership with
Living with a rare, progressive condition can mean your disability support needs change over time. Change can be slow, and hard to notice, but can be serious.
These resources help you recognise change, describe it, and think about what support may help. Use them for yourself, your child, or someone you care for. Use them on your own, or with someone you trust.
Start with the resource that fits where you are now. Use it in small parts, over time. You can share parts with your disability support services, health care team, or people helping you. They will support you, so you do not have to explain the same things again and again.
Rare and progressive disability support resources
Choose where to start
You do not need to use every resource. Choose the one that best matches where you are now.
Start here if you're noticing small changes
Learn: You don’t have to wait until it’s serious PDF
Why noticing change matters, and simple ways to raise concerns early.
Start here if you want to understand what has changed
Record: What's changed for me PDF
A workbook to record changes, patterns, and daily impact in your own words.
Start here if you’re unsure what to do next
Act: Not all changes need the same action PDF
Prompts to help you think about what kind of follow-up may help as needs change.
Start here if you’re waiting for support or a decision
Explore: While you are waiting for the NDISÂ PDF
Practical tips for the waiting period and supports you may use now.
Start here if you want to plan ahead
Plan: Future support, your way PDF
A workbook to note what matters to you, and your support preferences as things change.
