When someone you love has a disability or a mental health condition, being their family member or carer can be one of the most important and most demanding roles you will ever have. You may be their advocate, coordinator, decision-maker and main source of emotional and practical support, all while managing your own life and needs. It is done out of love, but it can also be exhausting and isolating.
You might be a parent supporting an adult child, an adult child caring for a parent, or a sibling or partner working out how best to help. You may be new to the National Disability Insurance Scheme (NDIS) or have been dealing with it for years. This guide is for you. At Lanara, we know that when we support an NDIS participant, we are also supporting their family. Below you will find practical guidance on working with the NDIS and with providers, and on looking after yourself along the way.
Understanding Your Role in Your Loved One’s NDIS Journey
The NDIS is designed to be participant-led: the person with disability is meant to be at the centre of decisions about their support. That is a good principle, but it can feel confusing for family members who have been the main decision-makers and carers for years.
Your role will depend on your loved one’s needs, their capacity to make decisions, and what they want. Some participants, particularly those with cognitive disability or significant psychosocial challenges, rely on family to help explain their needs, make decisions and coordinate services. Others want to take the lead, with family in the background. There is no single right way, and your role may change over time.
What matters is talking openly with your loved one about what they want from you. Do they want you at NDIS planning meetings? Help researching providers? A say in day-to-day decisions, or more independence? These conversations can be hard, especially if you see their capacity differently, but they help you find a balance between their independence and the knowledge and support you bring.
At Lanara, we welcome family involvement in whatever way works for each participant. We see families as partners, not obstacles to independence. If the participant wants family members present when they meet their support worker, we are happy for them to be there, and we value what you know about your loved one’s history and preferences.
Balancing Support with Fostering Independence
One of the hardest things for families is balancing support with independence. It is natural to want to protect the people we love and to step in when things get hard. But the NDIS is about building capacity and helping people live as independently as they can. Sometimes the most loving thing you can do is step back and let your loved one try, struggle, and sometimes get it wrong, because that is part of learning.
That is not easy, especially after years as the main carer and problem-solver. It can feel like you are not doing enough, and you may worry about their safety or how they will cope. Those feelings make sense. Building independence does not mean withdrawing your support. It means changing what that support looks like.
Instead of doing things for your loved one, you support them to do things themselves. Instead of making decisions for them, you help them weigh up options and choose. This is where a support worker can help. They can give the practical help and encouragement that lets your loved one take small steps towards independence, while you stay a source of love and emotional support rather than the only person providing care.
Many families find this takes some pressure off and gives their loved one room to discover what they can do. It can also change your relationship for the better, with less dependence and more partnership.
Managing Caregiver Stress and Burnout
Caring for someone with a disability is demanding. The physical work of personal care, medications and appointments is significant, and the emotional load can be even heavier: constant vigilance, worry, grief, isolation from friends, and the feeling that it never stops.
Carer burnout is not a sign of weakness or a lack of love. It is a natural response to long-term stress without enough rest or help. Signs can include constant exhaustion, irritability, hopelessness or resentment, pulling away from friends, trouble sleeping, and feeling you have nothing left to give. If you notice these signs in yourself, take them seriously and talk to your GP.
Many carers feel guilty about putting their own needs first. But if you are exhausted, it is much harder to give your loved one the care you want to give. Looking after yourself is part of caring, not a distraction from it.
In practice, that means accepting that your needs matter, setting some limits on your time and energy, asking for help from family, friends or services, and making time for things that restore you, even if it is just a short walk, a phone call with a friend, or an hour of reading.
The NDIS can take some of the practical load off you. Funded professional support services might mean a support worker assists with personal care, so you are not doing it several times a day, or community participation support, so your loved one has activities and friendships outside the family. It is also worth exploring respite options so you get regular breaks.
How Professional NDIS Support Can Enhance (Not Replace) Family Care
Many families worry that bringing in professional support means they have failed or are being replaced. It doesn’t. Professional support adds to what you bring, so your loved one has a team around them, with each person playing a different role.
You know your loved one’s history, fears and hopes, and you give them love and security. A support worker brings training, a fresh perspective and time focused only on your loved one’s goals. They can help with practical tasks, skill-building and social connection in a way that lets your loved one practise independence.
That can be good for both of you. Your time together can be less about tasks and more about connection. Your loved one gets to build relationships and skills outside the family, which is part of developing independence. And you get space to rest and be more than a carer.
Composite example from our work. Details are combined and changed to protect people’s privacy.
One family carer had been managing most of a relative’s daily support and felt constantly “on call”. Once regular support began, they had reliable time each week to go to appointments, catch up with friends and get everyday things done without worrying about whether their loved one was supported. Knowing the same support worker would arrive as scheduled also eased their stress, because they no longer had to keep explaining routines, preferences and important details.
Another family felt hesitant about stepping back, worried that no one would understand their loved one as well as they did. By working alongside the family during the early visits, listening carefully and keeping communication clear, the support worker gradually became a trusted part of the person’s support network.
At Lanara, we see ourselves as partners with families. You know your loved one better than anyone, and we value your input. With the participant’s consent, we agree with you how and how often you would like updates, and we welcome your feedback. Every one of our support workers holds a university degree in psychology or a related discipline and has completed mental health and trauma-informed training.
Navigating Difficult Conversations About Accepting Help
Sometimes the hardest part is the conversation itself. Your loved one may resist the idea of a support worker. They may feel it means giving up, being a burden or losing independence. They may have fears about strangers coming into their home or worry about being judged. Those feelings deserve to be heard.
Start by listening. Ask what worries them and acknowledge that change is hard. Avoid brushing it off with “you just need to try it” or “it will be fine”. Work through their concerns together.
It can help to describe support as a way to gain independence, not lose it. A support worker can give them more freedom to try new activities, get out into the community and build skills, which may not be possible if they rely only on family. Remind them they have choice and control over who supports them, when and how.
Involve your loved one in choosing a provider. Let them read websites, ask questions and meet potential support workers before deciding. At Lanara, once the initial paperwork is done, we arrange a meet-and-greet as the first session, so the participant can get to know their support worker and feel comfortable and in control.
Be honest about your own needs too. It is okay to say, “I love you and I want to support you, but I am finding it hard to do everything on my own. I think some professional support would help both of us.”
Finally, be patient. It is fine if your loved one needs time to get used to the idea. Start small, perhaps with a few hours a week, and build from there as trust grows.
The Importance of Respite and Self-Care for Caregivers
Respite, a break from caring, is easy to put off. But it is essential for your health and for your ability to keep caring over the long term.
Respite can take many forms: a few hours a week while a support worker is with your loved one, a regular day when they attend a community program, or a longer break. In the NDIS, the support that gives carers a longer break is now called short term respite (it used to be called short term accommodation). Not every participant is eligible, so ask your loved one’s support coordinator or the NDIA what their plan can cover.
Try to use some of that time for real rest, not just chores and errands. Sleep, exercise, a hobby, time with friends, or doing nothing at all are all fine, as long as it restores you.
Looking after yourself also means your own health. Are you seeing your GP? Managing your own health conditions? Getting enough sleep? Talking to someone, whether a friend, a counsellor or a support group, about how things are going?
There are services just for carers. Carer Gateway and Carers NSW offer information, counselling and support groups. Talking with other carers who understand can help, both practically and emotionally. You are not alone, even when it feels that way.
Practical Steps: Working with NDIS Providers to Support Your Loved One
If you are looking for professional NDIS support for your loved one, these steps can help you find the right provider.
Step 1: Understand Your Loved One’s NDIS Plan
Start by understanding your loved one’s NDIS plan. What funding do they have, and in which categories (such as Core Supports and Capacity Building)? What are their goals? This will guide your search and the questions you ask.
Step 2: Research Providers
Look for Sydney providers who offer the services your loved one needs. Read their websites carefully. Do they explain how they work, or only list services? Do they say what qualifications and training their staff have? Do they share feedback from other families?
Step 3: Ask the Right Questions
When you contact providers, these questions can help you understand how they work:
- What qualifications and training do your support workers have?
- How do you match support workers with participants?
- How do you involve families in the support process?
- What is your approach to building independence?
- How do you handle concerns or feedback?
- Can we meet the support worker before services begin?
Step 4: Involve Your Loved One
Make sure your loved one is part of the decision. Let them ask questions, say what they prefer and meet potential support workers. Feeling comfortable and in control makes a big difference to how well support works.
Step 5: Start Small and Build Trust
You don’t have to commit to many hours straight away. Start with a couple of hours a week, give your loved one and the support worker time to build trust, check in on how it is going, and adjust as needed.
Step 6: Communicate Openly with the Provider
A good provider will welcome your input. Share what you know about your loved one’s preferences, routines and challenges, and raise concerns early if something is not working. At Lanara, we see families as partners and we ask for your feedback.
Frequently Asked Questions (FAQ)
Q: Will involving a professional support worker make my loved one feel like I am abandoning them?
A: It is a common fear, but it doesn’t have to be that way. When support is introduced carefully and with your loved one involved, it can strengthen your relationship, because your time together can be less about tasks and more about connection. Talk openly, involve them in the decision, and reassure them you are not going anywhere. You are building a team around them.
Q: How do I know if a provider is right for my loved one?
A: Look for providers who listen, ask thoughtful questions, and talk about your loved one as a person, not a list of needs. Ask about qualifications and experience. At Lanara, every support worker holds a university degree in psychology or a related discipline and has completed mental health and trauma-informed training. Once the initial paperwork is done, we arrange a meet-and-greet as the first session, so you and your loved one can decide whether the match feels right before regular support starts.
Q: What if my loved one and the support worker do not get along?
A: A good provider will have a way to deal with this. At Lanara, if a match is not working, we listen to your feedback and look for a better fit. The relationship between the participant and their support worker matters a great deal, and we would rather take time to get it right than continue with a match that isn’t working.
Q: Can I still be involved in my loved one’s support if they have a professional support worker?
A: Yes. How involved you are depends on what your loved one wants, but a good provider will value your input. At Lanara, with the participant’s consent, we keep you informed, ask for your feedback and involve you in planning.
Q: How do I manage my guilt about taking time for myself?
A: Guilt is common among carers, but it is worth questioning. Looking after yourself is not selfish. It is hard to give good care when you are exhausted. Start small, even 30 minutes a week, and build from there. Many carers find regular breaks help them be more patient and present.
Q: What if my loved one does not have enough funding in their NDIS plan for the support they need?
A: If your loved one’s needs have changed significantly and their plan no longer fits, they can ask for a plan reassessment. Under the new NDIS laws, only the participant, their plan nominee, or their child representative can make this request, so a family member who is not a nominee cannot ask on their behalf. Gather evidence of their needs, write down what has changed, and get help with the request from their support coordinator (if they have one) or their my NDIS contact. With the participant’s consent, Lanara can provide a summary of the support we have given.
The Lanara Commitment: Supporting Families, Not Just Participants
When we support an NDIS participant, we are also supporting their family. You were there long before we arrived, and we respect what you know and what you bring.
We work in partnership: we listen to your concerns and welcome your input. Every family is different, so whether you want to be closely involved or step back and have more space, we will work with you to find the right balance.
Bringing support into your loved one’s life can be emotional. We take time to build trust with the participant and with the family. We are not here to replace you. We are here to share the load and bring our skills and training to your loved one’s goals and wellbeing.
If you are feeling overwhelmed or unsure about the future, you do not have to do this alone. Asking for help is not a sign of failure. It is a way of making care last, for your loved one and for you.
Taking the Next Step
If you would like to explore how support might help your loved one, and you, the first step is to get in touch. We offer a no-obligation first conversation to learn about your situation, answer your questions and talk through the options. There is no pressure.
You can contact us through our website at lanara.com.au, or call 1300 152 627 (1300-1-LANARA). We would be glad to support you, the supporter, as you keep caring for the person you love. We support adults across six areas of Sydney, from the Inner West to the Eastern Suburbs.