NDIS for Families and Carers: What You Need to Know

Someone in your family has just been approved for the NDIS. Maybe it is your child, your partner, your parent or your sibling. You are relieved they will get support, but you are also looking at a system that seems to have been designed by people who love acronyms and dislike clear communication.

You are not wrong. The NDIS for families and carers can feel overwhelming at first. The good news is you don't need to become an expert overnight. You just need the basics, so you can help your family member get the support they deserve. This guide is for you.

First Things First: What the NDIS Actually Is

The National Disability Insurance Scheme provides funding for people with permanent and significant disability to get the supports they need. It is not a welfare payment and it is not charity. It is an insurance scheme, funded by all Australians, that provides individual support packages built around each person's goals.

The NDIS covers people under 65 at the time of their first access request, and they can stay on the scheme afterwards regardless of age.

What an NDIS Plan Looks Like

An NDIS plan sets out the participant's goals, the funding they have been allocated, how that funding is split across categories, and how it is managed (NDIA-managed, plan-managed or self-managed).

The funding usually sits across up to three budget types, each with its own rules. We cover these in detail in our guide to NDIS funding categories, but in short:

• Core Supports for everyday help, such as support workers, transport and daily living assistance
• Capacity Building for skills and independence, such as therapy, support coordination and employment support
• Capital Supports for larger purchases, such as equipment and home modifications

The plan usually runs for around 12 months before a review.

Your Role as a Family Member or Carer

Here is what many families wrestle with: the NDIS is designed to support the participant, not the family. Your family member is the one with the plan, the funding and the decision-making power.

That does not make you irrelevant. But the system is built on a principle called choice and control, which means the participant makes the decisions about their own life and supports. Your role usually falls into one of three shapes.

Being a Support Person

You can attend planning meetings, help gather evidence for reviews, and assist with day-to-day coordination. The participant chooses how much or how little you are involved.

Being a Nominee

If your family member is unable to make certain decisions because of their disability, a nominee can be appointed. A plan nominee makes decisions about the NDIS plan, while a correspondence nominee manages communication with the NDIA. These arrangements are formal and come with real responsibilities. The NDIA explains how they work on its website.

Being an Informal Support

The NDIS recognises that families provide a huge amount of unpaid support. This is called informal support, and it is taken into account when plans are created. NDIS funding is meant to supplement what families do, not replace it, but it should also reduce the load on you. If you are burning out because your family member doesn't have enough funded support, raise it at their plan review.

What the NDIS Won't Fund (That Families Sometimes Expect)

Knowing what is not covered saves a lot of frustration.

• General household expenses, like rent, groceries or utility bills.
• Support for you as a carer. The plan is for the participant. For carer support, look into the Carer Gateway or state-based services.
• Medical treatment. The health system covers medical care; the NDIS covers disability-related supports that aren't the health system's job.
• Education. Schools and universities have their own disability support obligations.
• Things unrelated to the disability. The NDIS only funds supports that are reasonable and necessary and connected to the disability.

How to Help With the Planning Process

The best thing you can do as a family member is help with preparation. Good preparation leads to better plans, and our guide on how to prepare for an NDIS plan review goes deeper if you want it.

Before the plan review:

• Help your family member write down their goals for the next 12 months
• Collect provider reports and medical letters
• Document what a typical week looks like, including all the support they need, and note what has changed since the last plan

During the planning meeting:

• Let the participant speak for themselves where possible
• Fill in details they might forget or understate
• Be honest about what daily life really looks like, including the hard days, and take notes

After the plan arrives:

• Check it matches what was discussed, and help request a review if something isn't right
• Connect them with a support coordinator who can explain the plan and get things set up

The Carer Trap: When You're Doing Too Much

We see this all the time. A family member, often a parent or partner, provides so much support that the participant's plan ends up underfunded. The NDIA sees the family managing and allocates less formal support. Then the carer burns out, and there isn't enough funding to fill the gap.

If this sounds familiar, here is what you need to know.

• You are allowed to step back. The NDIS exists so that people with disability get support from paid, trained providers, not just from exhausted family members.
• Document the impact. At the next review, be honest about what you are doing and how sustainable it is. Provider reports noting heavy reliance on informal carer support carry weight with the NDIA.
• Ask for more support. If the participant needs more funded hours so you can have a break, say so. This isn't selfish. It is sustainable.
• Look into respite. Short-term accommodation, often called respite, is funded under Core Supports and gives carers a break while the participant is cared for elsewhere. A support coordinator can help arrange this.

If the person you care for lives with a psychosocial disability, our guide on the NDIS and mental health covers how these supports are funded and what to ask for.

Getting Help for Yourself

The plan is for the participant, but carers have their own support options.

• Carer Gateway. Free counselling, peer support, respite and coaching for carers. Visit carergateway.gov.au or call 1800 422 737.
• Carer Allowance and Carer Payment. Financial support from Centrelink. Check eligibility at servicesaustralia.gov.au.
• State-based services. In South Australia, Carers SA provides information, support and advocacy for carers.
• Your own GP. Carer burnout is real and your health matters. Talk to your doctor about how you are coping.

When to Bring in a Support Coordinator

A support coordinator takes much of the NDIS admin load off your family's shoulders. They are especially helpful when:

• Your family member is new to the NDIS and you are all finding your feet
• The plan is complex, with multiple providers across different areas
• You have been doing all the coordination yourself and it has become too much
• Provider waitlists are making it hard to use the funding, or a plan review is coming up

Support coordination is funded from the participant's Capacity Building budget. If it is already in the plan, there is no extra cost to you. If it is not there but you think it is needed, request it at the next review. Our overview of what support coordination is explains how it works.

At Navigator In Reach, we work with both participants and their families across Adelaide and South Australia. We explain the plan in plain English, search out providers, track the budget and help prepare for reviews, so you can get back to being a family member instead of an unpaid case manager.

Frequently Asked Questions

Can I attend my family member's NDIS planning meeting? Yes, if the participant wants you there. It is their decision.

Can siblings or other family members get NDIS support? Only the person with the approved disability gets a plan. Some supports, such as family therapy or behaviour support plans, may benefit the whole household.

What happens if I can no longer care for my family member? This is a change of circumstances that warrants a plan review. Contact the NDIA or your support coordinator, and the plan should be adjusted for the loss of informal support.

Need Help Making Sense of a Family Member's Plan?

We work with families right across Adelaide and South Australia trying to make the NDIS work for the people they love. We will explain the plan, connect your family member with the right providers, and take the coordination burden off your plate.

Book a free intro call with our team and let's talk about how we can help your family.