A carer's guide to the NDIS: your role, your rights and your wellbeing

If you care for someone in the NDIS, you may be the person who knows their needs best. You may also be tired. This guide is for you. It covers how you can help, your options, and where to find support for yourself.

Ways you can help

Carers play different roles. You might:

• help the participant apply or prepare for a plan meeting
• go to meetings as a support person
• help find and book providers
• keep records and check invoices
• speak up if something is not working

The NDIS says other people can help with applications and meetings, such as a family member, friend, carer or support worker. The participant leads. Your job is to help them be heard.

Support person or nominee?

These are not the same.

A support person can go to meetings with the participant. They can help talk, take notes and make sure questions are answered. They do not make decisions for the participant.

A nominee is appointed by the NDIA to make decisions for a participant aged 18 or over. A nominee has legal duties. The NDIA only appoints one when it is needed.

For children under 18, parents or guardians act as child representatives.

Read more in NDIS nominee explained.

Keep the person at the centre

Even when you help a lot, the participant is still the decision-maker where they can be. Some tips:

• Ask what they want before you suggest anything.
• Give them information in a way they understand.
• Let them try things, even when you are worried.
• Back them when they say no.

If they need support to decide, you can help them think it through. This is called supported decision-making. You help them decide. You do not decide for them.

Privacy and safety

You will see a lot of personal information. Protect it.

• Share NDIS numbers and plan details only when needed.
• Do not post plans, names or photos of the participant online without their agreement.
• Never give logins or myGov details to a provider, even if they ask nicely.
• Use your own account if you have one. Each person uses their own NDIS number and myGov account.

If you share videos or stories online, think about consent first. See NDIS and social media: staying safe.

What the NDIS looks at about family help

The NDIS funds supports that are reasonable and necessary. When it decides, it looks at what a person can do for themselves and what they get from family, friends and community. NDIS supports are meant to complement, not replace, those.

Government documents say that, for children, new guidance explains what parents are expected to provide, such as supervision and personal care. If this affects you, ask your NDIS contact. Our guide what is reasonable and necessary explains the basics.

Looking after yourself

Caring is hard. It is not selfish to get support.

Carer Gateway is an Australian Government program. It offers free services for carers. These include counselling, coaching, peer support, and emergency respite if you suddenly cannot care. You can call 1800 422 737 to see if you can use it. Using it does not affect NDIS services.

Other ideas:

• Join a carers group, online or local. See finding NDIS community and peer groups.
• Ask your support coordinator about breaks and respite options in the participant's plan.
• Talk to your doctor if you are unwell or stressed.
• If you are in crisis, call Lifeline on 13 11 14. In an emergency, call 000.

When something goes wrong

If you are worried about a provider, you can raise it with them first. If you do not feel safe, or nothing changes, you can contact the NDIS Commission on 1800 035 544. You do not have to give your name. Our guide what to do if something goes wrong with a provider has steps.

Watch for signs of trouble:

• a worker asks for cash or gifts
• the participant seems afraid or withdrawn
• a provider wants login details
• you see charges for supports that did not happen

A word on Goodo

Goodo is a community where every member is verified. Carers and nominees can earn a Verified carer or nominee badge. You can watch short videos from other carers, ask questions and join groups. A badge shows what we checked on a certain date. It is not advice or an endorsement. See how Goodo verifies people.

Before a plan meeting: a carer's checklist

Plan meetings can feel rushed. A little preparation helps you and the participant.

1. Ask the participant what they want to say, and what they do not want to share.
2. Write down the main goals in the participant's own words.
3. Collect recent reports from therapists and other providers.
4. Make a short list of what has worked and what has not.
5. Note any big changes, such as health, home, school or work.
6. Agree who will speak and when. The participant should speak first.
7. Plan a break if the meeting will be long.
8. Take notes, and ask for dates and decisions in writing.

If the participant is not comfortable with you in the room, respect that. They might prefer an advocate or someone else. The meeting is about their plan. See NDIS plan reassessment: what to expect.

About this guide

Goodo is independent. We are not part of, or endorsed by, the NDIA or the NDIS Quality and Safeguards Commission. This is general information, not advice. Rules change, so check ndis.gov.au or call the NDIS on 1800 800 110 about your own situation.