Working With Families and Carers: Our Role Explained

Behind every NDIS participant, there is often a family — parents, siblings, partners, adult children — who dedicate enormous time, love, and energy to supporting their loved one. These families and carers are some of the most committed, resourceful, and resilient people you will ever meet.

And yet, they are also some of the most exhausted.

Navigating the NDIS is complex. Finding and managing service providers takes hours. Advocating for a loved one through plan reviews, crises, and system changes can be emotionally draining. Caring for someone with a disability — day in, day out — is one of the most demanding roles a person can hold.

At 360 Support Coordination, we take our role alongside families and carers very seriously. We are not here to take over or to tell families what to do. We are here to work with them — as partners — to ensure the person at the centre of the plan receives the best possible support, and that those who care for them feel informed, respected, and less alone in the process.

This article explains exactly how we work with families and carers, what our role is (and isn't), and why collaboration is at the heart of everything we do.

Who Are Families and Carers in the NDIS Context?

In the NDIS, a 'carer' is broadly defined as a person who provides unpaid care and support to someone with disability. This can include:

• Parents of children or adults with disability
• Spouses and partners
• Adult children caring for a parent with disability
• Siblings
• Extended family members who take on a primary caring role
• Close friends who provide significant informal support

Carers are not paid support workers. They are people who provide care out of love and commitment, often without formal training and often at significant personal cost to their own health, finances, careers, and social lives.

The NDIS acknowledges the critical role of carers. Supports in an NDIS plan should complement — not replace — informal supports, while also ensuring that the caring relationship is sustainable and that carers are not placed under unreasonable strain.

Our Role with Families and Carers

Support Coordination is a participant-centred service. That means the participant — the person with disability — is always the primary client. Our decisions, recommendations, and priorities are guided by the participant's goals, needs, preferences, and rights.

However, for many participants — particularly those with complex communication needs, cognitive disability, or young children — family and carers play an essential role in decision-making, day-to-day support, and long-term planning.

Here is how 360 Support Coordination works alongside families and carers:

1. Including Families in Planning and Goal-Setting

When a participant wants their family involved, we actively include family members in conversations about goals, supports, and planning. This might involve:

• Inviting family to attend meetings with the support coordinator
• Facilitating family input during plan review preparation
• Helping families understand the participant's plan and what it funds
• Including family perspectives in service agreements and care plans
• Ensuring family members' knowledge of the participant's history and needs is heard and respected

We always check in with the participant first about how much involvement they want from family. For participants with full decision-making capacity, their preferences guide the level of family engagement. For participants who have a legal guardian or nominee, we work within those formal arrangements.

2. Helping Families Understand the NDIS

The NDIS can be difficult to navigate — even for people who have been in the system for years. For families who are new to the NDIS, or who are experiencing major changes to a participant's plan, the system can feel overwhelming and confusing.

At 360 Support Coordination, we regularly help families understand:

3. Supporting Carer Wellbeing — Not Just Participant Wellbeing

Carers matter. The NDIS explicitly recognises that supports should take into account the impact of caring on family wellbeing. A participant is best supported when the people around them are not burning out.

At 360 Support Coordination, we pay attention to the wellbeing of carers. If we notice signs that a carer is struggling — overwhelmed, exhausted, or at risk of carer burnout — we take action by:

• Discussing the situation with the participant and family openly
• Exploring respite options funded through the participant's plan
• Connecting carers with Carer Gateway — Australia's national support service for carers
• Helping to increase formal supports to reduce the burden on informal carers
• Referring families to counselling or peer support if appropriate

4. Navigating Disagreements Between Participants and Families

One of the more delicate situations a support coordinator can face is when a participant's expressed wishes differ from what their family or carers believe is best for them.

This can happen when:

• A participant wants to live independently, but family are concerned about safety
• A participant chooses providers or supports that family disagree with
• A participant wants to make decisions that family believe put them at risk
• Family members disagree with each other about what is best

In these situations, our role is clear: we are guided by the participant's rights, goals, and best interests — not by the preferences of family members, regardless of how well-intentioned those preferences are.

However, we also recognise that families often raise legitimate concerns that deserve to be heard. Our approach in these situations is to:

• Create space for open, respectful conversation
• Ensure the participant's voice is front and centre
• Provide the participant with information to make informed decisions
• Connect the family with appropriate support (such as family mediation or advocacy services)
• Document our decisions and reasoning clearly

5. Working With Families During Transitions

Family dynamics often shift significantly during major transitions — a young person moving out of home, a parent ageing and no longer able to provide the same level of care, or a significant change in a participant's health or functioning.

These transitions can be emotionally charged for families. Parents in particular often carry deep anxiety about what will happen to their child when they are no longer able to be the primary carer.

At 360 Support Coordination, we support families through these transitions by:

• Having honest, forward-looking conversations about what the future might look like
• Exploring housing options, including Supported Independent Living and Specialist Disability Accommodation
• Helping families develop a future planning roadmap
• Connecting families with organisations that specialise in long-term futures planning for people with disability
• Working with the participant and family to gradually build independence over time, rather than waiting for a crisis

6. Keeping Families Informed Without Breaching Privacy

A common challenge in support coordination is managing the flow of information between a participant, their family, and their support coordinator — particularly when family members are very involved and want to know everything that is happening.

At 360 Support Coordination, we take privacy seriously. We follow the Australian Privacy Act 1988 and NDIS Privacy Principles, which means we do not share a participant's personal information with family members without consent.

Here is how we navigate this in practice:

What Our Role Is NOT

Just as important as understanding what a Support Coordinator does is understanding what they do not do. This is a common source of confusion for families, particularly those who are new to the NDIS.

A Collaborative Approach: The 360 Model

At 360 Support Coordination, we view the support coordination relationship as a triangle — with the participant at the top, and the support coordinator and family/carers as the two supporting points beneath them.

Our model of collaboration with families involves three key principles:

Principle 1: Respect

We respect the knowledge families bring. Families often know their loved one better than anyone — their history, their communication style, their triggers, their strengths, and their dreams. We listen deeply and incorporate family knowledge into our approach.

We also respect boundaries. We do not expect family members to attend every meeting, manage every service agreement, or be available at all times. Caring is exhausting, and we work to reduce that burden — not add to it.

Principle 2: Transparency

We communicate clearly and consistently. Families should never feel like they are in the dark about what is happening with a participant's supports — within the limits of privacy.

This means:

• Regular check-ins with families (where the participant has consented)
• Clear explanations of decisions, changes, and challenges
• Honest conversations about what is and isn't working
• No jargon — we speak plainly

Principle 3: Partnership

We do not see our role as separate from the family's role — we see ourselves as part of a wider team working together for the participant's benefit. That team might also include allied health professionals, disability support workers, teachers, GPs, housing providers, and community organisations.

The stronger and more connected that team is, the better the outcomes for the participant.

Key Resources for Families and Carers

360 Support Coordination can connect families with a wide range of supports. Here are some of the most useful:

Frequently Asked Questions From Families

Can a Family Member Be Appointed as a Support Coordinator?

Family members can be appointed as plan nominees or guardians, which gives them a formal role in decision-making. However, it is generally not recommended for a family member to also act as the paid Support Coordinator for the same participant — this creates a conflict of interest and may not be approved by the NDIA. A separate, independent support coordinator is usually the preferred arrangement.

What If We Are Not Happy With the Services Being Provided to Our Family Member?

You have every right to raise concerns. If you have concerns about a specific provider, speak with the Support Coordinator in the first instance. They can assist in addressing the issue directly with the provider, seeking an alternative, or escalating formally through the NDIS Commission if there is a safeguarding concern. The NDIS Quality and Safeguards Commission can be reached at 1800 035 544.

Can Our Family Member Change Their Support Coordinator If It's Not Working?

Yes, absolutely. Participants can change their Support Coordinator at any time. If a family has concerns about the suitability or responsiveness of a current coordinator, they can raise this with the participant and assist them in exploring other options. At 360 Support Coordination, we are always happy to speak with families who are considering switching to understand how we can best meet their needs.

What Happens to Supports If a Parent or Carer Suddenly Cannot Continue Caring?

This is one of the most important things a Support Coordinator can help families plan for — before a crisis happens. We recommend all families work with their Support Coordinator to develop a 'carer contingency plan' that outlines what happens if the primary carer is suddenly unavailable. This might include emergency respite options, temporary SIL arrangements, or identified backup carers.

Our Family Member Does Not Communicate Verbally — How Do We Make Sure Their Voice Is Still Heard?

This is a critically important question. At 360 Support Coordination, we work with participants who use augmentative and alternative communication (AAC), communication books, behaviour as communication, or who rely on people who know them well to interpret their preferences. We take time to understand how each participant communicates and ensure their voice — regardless of how it is expressed — shapes every decision we make.

Final Thoughts: Families Are Valued Partners

At 360 Support Coordination, we know that behind every participant is a family that loves them deeply and has often fought hard to get them the support they deserve.

Our job is to work alongside you — not to take over, not to tell you what to do, but to bring expertise, coordination, and care that helps your family member thrive while also making your role as a carer a little lighter.

We believe the best outcomes happen when participants, families, carers, and support coordinators are working together — with clear roles, open communication, and a shared commitment to the participant's wellbeing and goals.

If you are a family member or carer looking for a Support Coordinator who will genuinely work with you, we would love to hear from you.

This article was written by the team at 360 Support Coordination. It is intended as general information only and does not constitute legal, medical, or NDIS advice. Families and carers should seek personalised advice from their Support Coordinator, the NDIA, or a qualified advocate.